Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours, too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.
Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to go out… Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN
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TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.
5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.
6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort.
12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.
AUTHOR UNKNOWN
I read your post and I was just curious as to whether you have lyme disease…from the way you described your problems it seems as though you could have it. My dad has been suffering from Lyme disease for 8 years and he’s now disabled but I know alot about it so I was just curious.
Thank You,
Tracy
Tracy, please go back and re-read this letter. “If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I.” For those of us in chronic pain, Lyme’s Disease is one of the very first things they test for. Trust me, if you suffer from non-specfic chronic pain, you’ve been tested for anything the various doctors you go to have tested for.
Your suggestion is infact one of the ones that sends me into a a silent rage. I try to contain it and not lash out at the person who is clearly trying to be helpful. It makes me want to scream. If you suggest something very rare, then maybe, just maybe, it might be helpful and not make me want to scream and cry at the same time. I wish to god that a cause for my pain can be identified. If the cause can be pinned down, there is a greater likelyhood that there is a means of treating it that might work.
I’m trying not to be inflamitory, only to further explain what this author is talking about. What every chronic pain suffer I know also talks about.
In my humble opinion, I think there’s one thing you haven’t tried : Traditional Chinese Medicine (TCM).
You’ll be surprised, there are MANY health problems that TCM can cure, but which conventional western medicine can’t.
I read this letter and finally I could say yes, yes, yes, I wish this letter could be published in every Dr’s waiting room.
LH Chow I have tried TCM as well as about 19 other non-medical “treatments” and all the medical “treatments” and I’m still suffering daily. Nothing has worked. So go back and read this letter, please don’t suggest a cure. We truly do try absolutely everything available to us and travel to so many places to try these cures. Often just getting worse and worse with travel and more and more let downs until finally we accept that nothing can cure us and we just have to ‘live’ with the pain the best we can.
Excellent reply. And may I add that TCM costs money and is usually only partially covered by insurance, if at all. Consider that people who take pain pills need to take them regularly. The same is true for TCM; it can’t be stopped for something incurable, but who is going to pay for it for the rest of my life when I can’t even work? These are some of the things that go though the minds of those of us in chronic pain, things that may never occur to the rest of you.
Gaye
I agree completely. If this letter could be publicly posted in Dr’ s offices or anywhere really, it might help more people understand what we go through. There are days that my legs just don’t work. I have to crawl everywhere I need to go in my house. I exploded a vertebra when I was 31. Back surgery only messed me up worse. Nothing can help me. My neck has been broken and not fixed. I’ve been through 4 other surgeries. They tell me now at 52 I’m just to deal with it. That is the Dr s opinion. Deal with it.
I agree with everything you said & most days I look forward to death because it has to be better than this life.
OMG I want to be your friend!!!!! You get it!!listen up folks… We have tried Everything… Diet, testing, pills, exercise, physical therapy, vitamins.. Uppers, downers… Ughhh!! What we want is to be treated normal… And when the flair is bad, we need encouragement & helping us through by letting us know you care!! Bring dinner over, help with a few chores… A phone call…I promise when the flair is over we are really good friends who want to help you too!!! If Chinese medication, yoga, skydiving, acupuncture, marajuana, ext. helped you, congrats!! Don’t go on and on about it. A simple suggestion… Then drop it!!!
No one understands what it’s like unless they’ve lived it, huh?
I often wonder if people are really trying to help or feed the ego. “I’ll be that one person that figures out” syndrome.
I know people care, but I’ve broken down before because I’ve had to explain, yet again, to the people closest to me of all people, why one day this happens, but not the next. It’s exhausting!!
I’ve gotten “you look fine”
“You did this yesterday” “can’t you find a part time job doing computer work at home?”
From my relatives!!!
It’s too much.
I’m in tears I just read a letter I could of written I’m 48, 28 years ago pain stared 20 years ago diagnosed fibro 28 years ago felt like a brick was lodged under my rib cage diagnosis cyst on overy cyst burst so they say but following week same pain now 28 years later same pain under my rib feels like small balloon is directly below going under my rib i can’t sit or stand without sever pain I finally went to er for help I was treated like sh.. it’s like they think I’m complaing over a pulled muscle well blood work fine always is my ribs feel like a baseball bat wacked them did exray of rib i have had no physical injury to my ribs 3 years ago I had golfball size kidney stone it was blasted twice 2 Stents and that’s when bruised feeling started I’m flat on my back 99 percent of the time but I’m fine can’t find anything I saw reg doc today he said I have a difunctional GItrack and chronic pain syndrome said my liver is fine how I have no clue I smoke 2 packs a day been on norcos 4 500/325 a day for for ten years and 750\325 ten years from present helps like a over the counter med I’m at my wits end I’m not living for me I’m alive to care for my animals I would of ended it lonG time ago if I didn’t love em so much.oh with a sad look doc asks me if I’m depressed I said this is depressing me yes .well he said he was refering me to a pain clinic sure I once they see I have no insurance I’m sure they will be all over trying to help me .I can’t live like this I’m not living now I’m just alive and I have bills so I work packing cookies very easy work but pain everyday some bad days some how the hell am I going to make it to calling off no way I can my housework my showers are basically picking up when I have to and showering once a day .I don’t want a pill I don’t want a massage I want someone to fix this I get charged 1000s and 10000s and I’m worse than ever but doc says well I see you work so that tells me your ok you just need to know how to manage my pain.omg I swear if I had no animals I would get a gun walk into the docs office ask for him a blow my head off and I want to live j want to go outside for a walk I want to just be normal I’m sorry I’m going on but maybe someone can help me offer me some advice someone who has been in my shoes …
This letter is not a cry for help, it’s a cry for people that don’t live with daily pain to understand those of us that do! That’s all nothing more!
Awesome answer! And an honor to meet you all. Have felt alone and out numbered so long I have become a little hermit 😉 If people want to help, would be nice if they’d help get groceries in instead of more suggestions. Our minds and research aren’t in pain, just our bodies. I’m SO tired of suggestions! I’ve ran my life 54 years, then once my body became disabled, everyone else became authorities on it. But none offer help with chores, where I desperately need it, so I started closing people out. Already have my disability and too many diagnosis’ saying I should be in a wheelchair! But no doc’s to even send a CNA in to help? Losing my vision some too, so please excuse typos. I’ve lived like this since 2004 so yes, lonely hermit ;( Very happy to meet like minds!
I keep myself and house as clean as I am able alone. Not at all acceptable to the person I was. But the pain makes my shower dangerous and in this world, I think I’m a disposable person now. To my family as well, as I think they now consider me lazy. I hurt in many ways. I don’t want to, but will probably have to give up my cable and wifi next. Have Medicare instead of Medicaid and am on small SSD income.
Financial stress makes pain worse but quiet living alone. Own my house so roof over head! My aching body makes a sorry maintenance man. Plumbing? I have to hire that! Comes out of grocery money but I never have Extra weight. God bless all of you living with this. I’m so tired of being tired and hurting, yet try to just fake a smile when family is around to avoid lectures. I am the elder who fed them and don’t need them telling me I need sun and exersize! Stating the obvious doesn’t help. I’d love it if I felt like going for a walk even, instead of feeling like closing my eyes forever. Not a good thing to tell your kids so I stay alone.
Yes we do try everything. I will not try surgery though. I have no desire to become more out of wack then I already am.
Well said
AMEN!!!
LH Chow, how do you know the letter writer has not tried TCM? Because the writer is still in pain? You are assuming that TCM cures everything. It doesn’t. It can cure some things and can manage others, but it cannot always (usually not) take away the level of pain that some of us suffer. Or, it helps while we do it, but eventually we have to stop because of the cost. People who are not in chronic pain cannot imagine what it is like for the rest of us to constantly hear that we should try something that we have already tried. People who are not in chronic pain cannot imagine what it is like to to realize that somehow we have manage this on a meagre income for the rest of our lives. Since you know about TCM, you probably know that some, and ONLY some, insurance policies will cover acupuncture and only for a finite period of time. Herbs, cupping, anything else related to TCM is not covered. Think about what happens if we stop pain meds–the pain returns, or, rather, the limited effect we get ends. Same with TCM–you have to keep it up for chronic conditions. THAT is the meaning of chronic. Some of us know the source of our pain and we have incurable diseases. When you can think of a way for us to pay–for the rest of our lives–TCM or any complementary treatment, let me know. In the meantime, the opening of your note stating that you think there is one thing the letter writer hasn’t tried is offensive.
I am a medical doctor specialized in Endocrinolgy, Nutrology, Tradicional Chinese Medicine ( Acupuncture, Herbal Therapy and Nutritional Chinese Therapy).
TCM doesn t heal everything, it provides a relief that either works as an adjuvant of alopath drugs or eases pain by itself. BUT it doesn t heal everything and in my case doesn t work for my chronic pain. There is a lot to study and improve in TCM as in Western Medicine. There isn t such a thing as Panacea.
Thank you thank you, thank you. I’m in tears – have been all day. I found a dog on line that looked just like I had that passed away three years ago. Asked my daughter if she would help me pick it up (I cannot drive – I have chronic severe pain and epilepsy). She does not think I need another dog so no, she will not help. I am alone, no local relatives and live on a dead end street. I’m alone 99% of the time. The only things that have gotten me through are my dogs. Just because I am in pain does not, I repeat does not, mean that I am incompetent to make decision for my own life. If you do not agree with what I eat will you not take me to the store? If you do not agree with what I want to wear will you no longer take me to get clothes? (BTW something I have not done for 8 years. I know who I am, what I need, what I want. I have had so so much taken from me with this incurable disease, please don’t demean me by taking away my ability to chose.
I can only say i am so.sorry.my husband has chronic pain and there have been times i was not understanding and probaly made him feel bad for not wAnting him to.just spend sometime with me.the rejection i felt hurt very bad.but i was selfish for nothing having any idea what he was going thru.all i say is i will pray for rerelief they will.find for u.my heart truely does break for u.
I am part of this group as well, your so right i wish people would just understand, they even think i am faking it, i have had 9 back surgeries, 3 kneck, and 2 ankle surgeries. I have an implant for pain that just helps to keep me off the hard pills, i go to pain mang. I am their geiny pig. I hate it, then theres my husband of 34 years , i am 54 by the way, sometimes i really feel like he thinks i am faking it, one day i’m o.k. then the next i am on the coach barely making it to the bathroom, and i get oh no what now. “Same stuff still hasn’t changed” i have degeneritive disc. And joint desease. He thinks that with all the meds. And surgies i should be getting better. The dr. Says its going to get worse. He doesn’t listen and you know i think the frustration of not being supportive makes the pain worse. It would be so easy to just take all the hydrocodon, and clonapen and end the pain. But i have 2 kids and 3 grandkids to live for. But its pretty hard sometimes.
To crucified. I truly feel your pain. I think from where I stand, that a little compassion would go a long way. Suggestions are not what we need, but more a kond thought or at least not condemnation. I have been living with chronic pain for two years and very poor sight to boot. It changes your life. I went from being a very productive member of society to being mostly couch ridden and often fearful of doing anything as it might cause miserable pain. I am fortunate to have a very loving husband and his total support, though I am sure it sometimes is frustrating for him. What we need is to feel like the world is not dismissing us. I doubt any of us wanted this. I miss being able to read and I truly miss my gardening and hiking. Chronic pain changes your life. I am not clear why so many responses are about fixing something. Maybe it is because I am in the same position. I got the feeling the author just wanted to share and open a forum for many in a similar position. It seems it invited criticism and/or judgement. Next time you see somone who’s face is showing pai. Either physical or emotional, maybe just smile say hi and not try to fix what you do not understand.
Weed helps with severe chronic pain
Traditional Chinese Medicine – what a joke. You shouldn’t have posted that comment.
At least the person who posted it was coming from a place of caring , don’t be mean
I can t stand being in my body, it constant pain , no one can see, just the ugly faces I make and yelling at times you can t take another second of it. Then they make you look isane because it is literally driving you insane. But insane is not my problem , it’s physical pain judged to be insane or a bad person. Are we that far away from compassion, empathy in this country we can t help patients in terrible pain , left like this from a bad chemo drug for a profit. I ve already gone threw hell for a profit to kill half the people on the meds I was on so why am I being kept from help by other colleagues of mine ? I m an RN and saved many lives, made dying not about suffering until the end. What in Gods name is this all about? You are judging phys with physical pain and it’s so messed up and misunderstood. It’s awful for a friend of mine that can t get the right kind of help. That’s a revolving door in RI. Dr levy gave me a life for 30 yrs I couldn’t t get here.
Now due to not being handled correctly we are suffering and praying to die to stop our suffering , that’s not depression it’s pain people
Chris mets patient advocate and mom
Agreed. That kind of shit sends me into a fury. It shows just how pointless it is to try to get through to people who want to get up your ass about your pain without knowing what the fuck they’re talking about.
Just because someone is in pain it does not give them the right to be rude. Sometimes, pain comes to people who already have a lot of anxiety, or other underlying cause. That is a fact. I’m not talking about the person who had an accident, but the mystery pain sufferer. I know the pain is real, but something made your pain go haywire. And when someone sees another person, especially a family member suffer it is HUMAN NATURE to want to help!
I tried accupuncture two times. Did nothing for the chronic pain. Recently dx with fibromyalgia. Added to a
laundry list of other health issues
the fact is to all is in three parts , greed is the ama , and the pharmacy corp. the cheapest pain killer is less then twenty a month and the use their lobbyist to run the price up $120 to see the doctor and $20 or $50 co pay to get it and you have to see him each time to refill .
#2 all the other so call pain killers can kill you easer and they cost five to 50 times more and they are just as addicting and they work on your mind.
#3 those who bad mouth pain cheap pain killers have no idea what pain is and the day that will come to them is the only time that they will understand how it feels and a lot of doctors will live you in pain and will not give you the cheap pain killer , I see a lot of people in pain and they have not been told of the cheap pain killer and so on and they should have their med li taken from them to show them pain!
my daughter have cronic pain since 3years can not finctioning much, we went all over places doctors could not figure out excetly where this pain coming from, i wish all her pain comes to me , seing her suffering gave my life darkness, i have arthristes on my knees , it hurts bad but i got use to it thank god they are functioning so i can help my daughter when i stand up one hour they kill me with pain thats okey i excepted, i am soo worrying about me daughter, i wish we can all live together who has a pain in the same house so we cant feel lonly and support each other,,you all would like the live all together? let me know ,,love you all
Thank you, this is nonsense.
Oh boy, here we go again with another do gooder. As someone who suffers myself, I can say with certainty that TCM neither ‘cures’ nor helps in the long run either. This ridiculous culture of “just buy this or that” and “instant gratification” doesn’t get it at all. Next you’ll tell us to do positive affirmations. You get back to us when you’re suffering yourself and tell us all about how you cured it.
I’m a chronic pain sufferers and I started looking for things on the internet to explain to my Dr. I agree with most everything that has been said but wish it had been written for an ignorant dr!!! I saw an anaesthetist in a pelvic pain clinic and then she tricked me into attending the main pain clinic. All they do is offer a program of exercise and try to educate you about chronic pain and then they offer mindful meditation as a panacea. I have ME/CFS on top of other chronic pain and cancer in remission. For ME exercise is not highly recommended due to post exertionsl malaise which worsens the pain and fatigue. It was interesting to read here all your other experiences for those of you with just chronic pain and it was my feeling too that exercise can worsen things and would not be helpful even for folks without ME. This horrible clinic also has a questionaire that asks you how confident you are that you can manage your pain without mess. I think they are cruel and clueless. I. Live in Australia and all our pain clinics follow this ridiculous bio psychosocial model. Can anyone help with ideas on how to educate a so called pain specialist and other clueless multidisciplinary professionals??? Tough act to change a system. At least with clueless friends, one can drop them.
Hello all let me start by saying I couldn’t have put this any better myself. It is extreamly hard living with a chronic illness for me understanding from loved ones means the most when I am in a lot of pain. I have suffered with fibromyalgia for over 2years now I am 26 just the fact I have this at a young age makes me feel ashamed as older people are more likely to get it. compassion can go along way with a chronically ill person please remember this my thoughts are with you all I can only share you pain xxxx
Nobody says that there is a simple fix…it’s a matter of not giving up. And all of you who are in pain, and are so quick to “hate” those of us who try to help, just remember this…if you were on the other side, you would do the same. Why is it that some people hurt and suffer, but are nice, and some hurt and suffer but are mean?
Right on I’m with you on that one I hurt so much and trashed by my grown son it’s awful I feel like I can’t go on. Nancy
Amen!
Did you even read the letter? You have no idea what she’s tried, and there is nothing humble about pretending you do.
Spot on! I tried Chinese Medicine for my Fibromyalgia … yeh! I ended up in the Emergency Dept as the herbs nearly burned a hole in my stomach! We used to cook them outside as the smell was so intense. I am a “sensible” person, and the herbs were prescribed by a registered physiotherapist. I am really tired of people “suggesting”cures … without knowing the nature of the disease. Anyway. I hope we can all find some relief.
In response to 26Y/O fibro suffer 2years in pain I was injured @ work as a lic T
As she said above, you are suggesting cures for her. You have no idea what forms of health care that she has tried or currently using.
I myself am frustrated with your suggestion- you are indirectly doing the same thing to me. I have been seeing a TCM Dr for 2 years. They do not heal my AS (ankylosing spondylitis) arthritis. and neuropathy.
What they can do is help build my immune system because I am on an immunosuppressant, they do help reduce inflammation however the inflammation comes back, they can help with muscle spasms but the muscle spasms come back… because this is my disease.
TCM will NOT cure me.
Hello, My name is Meagan, I’m 17 and was diagnosed with Budd Chiari Syndrome(a rare illness) Three years later I starting getting these migraines that last week’s at a time and we step 2 years more into the future and nothings changes except for my amytriptyline dosage. I take Tacrolimus (Prograf), Warfarin(coumadin), Dapsone(aczone), and of course amytriptyline (treats nerve paint and depression). I just wanted to thank the author of this letter so much, I cried from relief because I finally found people who understand what it feels like. I’m just so grateful, I implore the heavens and God above that all of your pain be erased from its existence. Thank you so very much?
Also, anyone feel like listening to My Chemical Romance’s I’m Not Okay. ???
Weed
LH Chow Please don’t be so smug. I have tried it to no avail.
This letter is so great and may even save some lives.
Funny how you perceived LH as smug, and I only saw someone who was trying to help.
I have tried EVERYTHING all over the country and world for that matter, and again, to add Dawn’s point, please re-read the letter. It’s frustrating for everyone to have answers, and no empathy.
I don’t think a lot of you people know what empathy is… the definition is: the ability to understand and share the feelings of another.. but most of you would be the first to say that we don’t know what you’re going through. And I love how people who WERE in your exact shoes have felt compelled to share their stories and you still are full of anger towards them.
I hear you. I am completely alone and have extreme pain. No joy. No life. No friends or family.
See you on the other side.
I’m like you. I have tried everything. My pain started when I was 14 I was hit by a car and had both knees replaced and my first of many back surgeries then at 16 I was thrown and kicked by a horse it destroyed my back and had to have mother surgery. The worst was when I was19. I fell one hundred fifty feet into a rock quarry. They had to repell down to get me in the helicopter to life flight me to a hospital. I broke my back in several places I broke my neck and completely crushed both shoulders. My life changed drastically that day. I’m 39 now and my pain level is off the roof. I can’t do much. I was treated comfortably as possible for about 15 years. I was on a lot and high doses of narcotics and I go to chiropractor twice a week and physical therapy twice a week. I still do. Then came the war on drugs and there focus was pain doctors. I’m in Kentucky and it is the most barbaric state in treating pain. Since people started abusing pain killers the drs won’t treat you anymore. They tell me we know you need a lot of meds but we can’t prescribe them anymore. He told me that I would be better off going to an addiction clinic to get your meds. I was on 80 mg of methadone 3 times a day. I was able to manage with that plusinjections nerve blocks lidocaine etc. so he told me it’s unfortunate but addicts are treated better than pain patients. I didn’t accept it and tried to find another physician. I did but he changed my meds to 40 mg of opana three times a day with four 30 mg oxycodone for breakthrough pain. I know it sounds like a lot but it barely mulled the pain. I still cry everyday uncontrollably well that lasted two years and then the dea got involved and for the last few yrs you can’t get a dr to write anything but two lortab and tells u to use them when you hurt the most. I hurt constantly and it didn’t work. I didn’t have a choice any longer so I had to go to addiction clinic and say I’m an addict cause they don’t treat pain. They put me on 90 mg of methadone once a day. The problem is it’s not for pain so I only get relief for eight hours. Then about 8 months ago I decided I was in to much pain and I’m worthless to society. I did not have a gun but was determined death was better than suffering. I poured gasoline on my body and lit myself on fire. I know it’s gruesome but pain is unbearable. Unfortunately I woke up a month later in icu at a burn unit in a hospital And no it’s not worth it but now I have severe burns on sixty percent of my body. They saved my life which I didn’t want them too. I’m really hopeless now. I can’t even get a dr to do nerve blocks. Or trigger points anymore I’m stuck at an addiction clinic where I get eight hours of relief. I’m not depressed I’m just in pain. I don’t know what to do anymore. Every time I try to end my life I fail. Life really sucks and it’s crazy that the addicts that screwed up our pain treatment can still get all the meds they want at addiction clinics but pain patients can’t get any treatment. Does anyone have any recommendations ? Please respond if you know what I’m experienced.
I have tried EVERYTHING, traveling all over the country and world, for that matter in hopes of relief. It’s frustrating for people to keep suggesting, as if we want to live this way. To Dawn’s point, please re-read the letter. We don’t need suggestions, we need some understanding.
Dear Anon,
When you live with chronic pain for years, suggestions are all that we’ve heard. It’s not that we don’t understand you want to help, and some react with strong words, but when you’re in our shoes, we want understanding, not judgment.
I truly believe that the word “smug” by Anonmous was just out of frustration of one again not understanding how difficult is is to get relief without always being judged. Overall people think that we’re faking it as one day we can do something and then we’re incompasitated the next. Yes, it may sound crazy, but I live it everyday. I’m young and have a disability placard, and there’s nothing worse than to have people make comment that I’m using my Grandmothers placard to get a good parking spot. They don’t realize that I may not make it 100 ft. to the location I’m intending, which is usually a doctor’s or treatment office! All we of chronic pain ask is please don’t judge, find empathy, be open to things you don’t understand, and although possibilities are endless, there may not be a cure right now, because surely we’d take it over living like this. There’s always the power of prayer. Pray that we find a solution, sometimes it’s better than opening your suggestion box.
Great letter! I agree, it should be in every pain mgt., Lyme disease, and other doctors offices.
In re reading the letter it does say if u want to offer an idea go ahead and say but don’t carry on about it. Can’t shoot someone trying to help you, they just care.Maybe u need to re read the letter.
You’re quite blessed to have been able to try everything, and to travel the world over, to find a cure for chronic pain. That said, I also understand that, having tried so much, and having traveled so much, with no relief must feel incredibly frustrating.
How beautiful life is without chronic pain, and how dire life is with chronic pain simply cannot be understood by others who have not had chronic pain.
For myself, however, as someone who has had chronic pain, I welcome any kind, nonjudgmental suggestions . It means someone cared enough to offer assistance and a ray of hope in possibility. But that’s me.
Francis what you said is totally true. In such a small paragraph you domed it up. I don’t know what we can do. I’m so tired of hurting and nobody seems to care. I am so ready to leave this body. I bet hell is better than this. I tried real hard to leave this world but the drs saved me so I could just stay here wasting space and hurt every minuet of the day. It wasn’t cause of lack of trying. I poured gas and kerosene all over my body and lit it. I went into flames and the heat and burns are unexplainable. I tried to stand and burn but my brother put me out. I went unconscious during the fire and woke up over a month later in icu burn center. I wasn’t happy I came back and I just added so much more pain. We should not have to feel like this when they can make us have some quality of life but because of addicts we can’t get treated but the ines that screwed it up for us can get better treatment than us. They can go to methadone clinics or suboxone clinics but we can’t because they don’t treat pain patients. Why is it like this?
FRUSTRATED – I read you – my husband of 47 years actually said ÿou want to be sick”!!! Don’t know why hee’s still alive… Because I wouln’t do that. I’m 74, have been in 9 car accidents, am on fairly heavy meds, do acupuncture and Healing Touch – am considering dry needling… Have tried it all. Just had breast cancer surgury, will have L shoulder surgery, oh – had radiation (20) sessions and am on Tomoxifin for 5 glorious years. Depression is at the top of it’s game as is axiety – have Psychiatirst and Psycholosigt… I, like all of you am very tired of not being able to plan a day.
Have degenerative joint and disk desease too – my hips are not stable. Broken tailbone from a 3 time rollover and/or birth of second son 9lb 2 oz.
My German father when overwhelmed would say – ACK YAH or I GAVAULT…. So, I just joined the discullion. Plan to print the lettere for my family as soon as someone fixes the printer. To the author – HOORAY for your been there done that letter. I helped my mood today – thanks.
I think you make a very good point. Even though most times I hate advice as stated.
Hahahahaha!
I think the you name we’ve tried it, would cover TCM
I would love to know more. Thank You! 🙂
FUCK you
Oh please. Don’t be an insensitive ass. People in serious pain have heard of & usually tried non-Western alternatives. We’re in pain, not stupid or uninformed.
I love acupuncture.
We all know insurance will not pay for it.
They will not even pay for an osteopath.
I had great results from someone that CURED my bursitis, in 5 minutes, with his hands.
I had prior, endured steroid injections, for 10 years, that made me worse, before I got a mere 3 weeks of relief.
Healthcare is blind to “ways” that are not conventional to present MD’s.
Hello sweet warrior,
Please know I come with love. And Lyme disease is not rare. You are right! BUT knowledge and testing for “Late stage Lyme Disease” is a completely DIFFERNT DISEASE. They are working on re naming it so the two are not confused. The doc “Under Our Skin” is free on YouTube; the first tens minutes, they interview people like you and me who have been to HUNDREDS of doctors and healers. Have been tested with the WBT, and it was negative. We WOULD know! ….right? I am now 31, disabled, and suffer from constant insane pain. I loved your article. Please, can I share a bit about me to you? You helped me by sharing, I pray to do the same.
My response would have been the same as yours two years ago. But now, it would be the same as Tracys.
I was 28, a healthy yoga teacher (although I have had a headache since age 14, thank you bad genes and mold), but I woke up one day and couldn’t lift my left arm. The pain radiating down from my shoulder was insane! And it never stopped. Instead, it spread and I have terrible flair ups. They called it Fibromyalgia, lupus, and MS….. Ha.
I was tested for Lyme at my many many Rhumatologist visits and hospital stays. The good old Western Blot test said “no, you DONT have Lyme Krysten. “. It said that well over five times. Maybe more like 10… Sadly, no one told me it’s not accurate. I had not seen the tick nor did I ever develop the rash. Can’t be Lyme! Right….???
WRONG. Dead wrong. Thank GOD I tried everything that USED to work for pain, but very oddly made me flare up! I was a yoga teacher!! I got people OUT of pain but yoga would make my next days pain WORSE!! That’s when my gut said, they’re missing something BIG. And I threw my arms out and asked for more blood tests every visit. Doc got annoyed and sent me to one of the people who saved my life, a woman GM who’s daughter had Late Stage misdiagnosised Lyme. She made it her job to learn as much as she could.
She send me for bloodwork to get my CD57 level checked along with tests for co infections like Babesia and Bartonella (AKA cat scratch fever!) she said if this test came back funny. But my next visit, she walked in, placed my folder and labs on the table and said the magic words, “Ok, I KNOW what’s wrong with you and what’s causing the pain. You are VERY sick with Lyme and have (almost all) co-infections. It’s time to fight!” Holy cow. From there, I thought the battle would be easy. I can tell you it has not been, BUT she saved my life. I would have MS, possible ALS, continue to have my brain and body damaged daily by this incredibly evil and deadly disease. Please sweet one, please read up on the things I wrote about. It’s a wild ride and some doctors don’t ADMIT late stage Lyme exists!!! The government is hiding things and it’s scary. But there is support and so much love. So much! I’d love to help you find a doctor in your area who is “Lyme Literate” and could perform the PROPER test, and then help you go forward.
I sit with over 80 beautiful people a day in Florida on IV. Almost all of us, with the exception of one or two, are there for Lyme. I see young women get out of their wheelchairs and walk, I no longer sleep 80 hours in a row. My life is flowing back into my body and it’s amazing. Pure bliss. I believe my doctor, Dr Rick Sponaugle is one of if not THE best in the country. Along with my cervical spine Chiro, Dr Julie Mayer Hunt, who actuLly WON 2014s “International Best Chiropractor of the Year Award”!! Lol
I share this with love. I share this because I THOUGHT the blood tests I had done were accurate. I managed a doctors office and NEVER knew of this. And I too get frustrated when good intentioned but not well read people suggest things I’ve tried over and over. But I’m well read, and I’ll bet you $100 bucks that no doctor did the proper test for you, because I spent thousands on testing. And it took a doctor, a mother, a life saver, to EXPLAIN this test and save my life xo
I also want to thank you from the bottom of my heart for writing this article. I’m going to share it with my new BF. The things you touch upon and info are priceless. And I want you to know that you’re not alone and have a friend in me xo.
Please. Please let me know if you want to exchange info. And please, don’t let this go unnoticed, it leads to horrific diseases and destroys the brain and body.
All my love, luck, and respect from one Chronic Pain Warrior to another xo,
Krysten
Krysten,
I am 31 and what you have written is the EXACT thing I have dealt with since turning 27…same diagnoses and everything (except for the late stage lyme and coinfections). I would love to exchange contact info with you and discuss more/be there for one and other. Please let me know whether this is something you would be interested in.
Love, Kristin
This is so amazing. Its like everything ive always wanted to say to everyone in my life. But ive been suffering for so long i dont even have it in me to try to explain to anyone how i feel or what i need etc. im so glad that there are people out there willing to talk and help eachother cope. I havent been able to talk about what im going though. Ive pretty much withered away into nothing, ive forgotten what being a person feels like. Ive come as close to being nothing as possible, if it were possible i would crumble into pieces and become dust on the floor. I think its time to talk with someone. To not be alone. Its so hard to talk about the struggles you face every moment, when all you want is to forget about it and pretend your ok, or pretend that you dont care about anything.
Hello
Hi, i don’t know how old you note is but I won!d like you to email me. I am a 35 female with no answers and no proper Lyme’s test. It has been going on for nearly 9 years with a diagnosis of fibromyalgia. I believe it is more. I have no support and my own boyfriend has just tuned on me saying I’m crazy and just lazy! I am at my wits end with doctors and people. I have better thins to do that make this up. Some of my symptoms are visible to the eye . if yo could help me as I am in Canada and they do not test properly for Lyme’s. Funny thing is my mom has a cabin where Lyme’s runs rampid. My dog was treated for two types of lymes that he got from the many deer ticks I pulled off of him! I saw what it did to my dog and he became paralyzed until treated. Something is poisoning my body every day! And I am on disability no able to work. I have pain , tightness, severe leg weakness, burning, squeezing, many sensory issues yet nothing found on emg or nerve test. The people I do have are saying g now” well they have done so many tests so it might be in your head. I do not get panic attacks and then experience this! It is there when I’m happy, sad, sleeping, or mad. Plz let me know how I would get the proper test done as I live in Canada and there is so much controversy over this. Thanks a bunch!. Nice to see other people I don’t even know believe me when the closest ones to me don’t!
Aahh GENTLE HUGS
Frustrated: But aren’t you even the least bit curious when you hear that someone has overcome their chronic pain???
Thank you! I feel for you, especially on the everyone telling you that you’ve been tested and nothing was ever physically confirmed part. I was confirmed to have pelvic tension myalgia from my urologist and physiotherapist, but because they are considered diagnosed conditions after they can’t physically find an ailment on any tests, everyone says it must be in your head. I lost my wife because of this nightmare, partially because my wife constantly accused me of it being in my head. Now, I have to fight this thing alone. I still work because I have to do so, but for how much longer will I be able to work with pain and bowel problems if they get as bad as they were last time? My pain used to be a 9 out of 10, I urinated every 10 minutes, I couldn’t defecate without laxatives, I got short term IBS, and couldn’t sleep or eat because of ibs symptoms. Now, after 4 months of feeling great with no symptoms, they are back again, with the exception of the pain being a 5 out of 10 and my urination problems being gone. The other thing I might have to look forward to is impotency at the mid age point in my life. That is something else this horrible condition can cause. My parents are pretty sick and couldn’t take care of me if it ever got to that point. My other family live quite a ways out of town and have their own families. My friends that are here in town never check to see if I need anything half the time. I will sit alone in my apartment in pain every weekend and never hear anything from a friend or some family half the time, asking if I need anything or if I’m okay. That is an incredibly lonely feeling and only contributes to the pain. I used to be a pretty happy guy, involved in martial arts, sports with my child, and working out all the time. I have always been a hard worker, but frankly the pain keeps me from being as much of a go-getter as I used to be. No cure in sight because the medical community doesn’t seem to give a $@!# to fund it for research. Millions of people going through chronic pain conditions and tons of health cost spent on it every year, but it sure doesn’t sound as sexy as funding boner pill research, so they don’t seem to care. It also won’t generate the funding that some of the other more rampant conditions generate so they don’t care either. It is all about how much money the machine can generate and not about human decency. I’m over it!! And the next one that says I’m just depressed and that is what is causing it, I think I’m going to scream at them! Of course I’m depressed!! I’m in pain and my bowels won’t work right. Wouldn’t you be [email protected]#!?
Hi Jolene, I have a surgery April 2014, after that pain is everywhere back to legs., having a same story like you. People says I should work, they have no idea what’s in my inner side.
Please if you could email me. I am 35\f with a life of pain and weakness. Dog had two types of Lyme’s and was treated. I cannot find an answer and have no support. In Canada they don’t test proper for Lyme’s. I do have fibromyalgia. But 9 years ago just after being in deer to k heaven I became so incredibly I’ll. I feel poisoned every day and have got to know how to get the proper test done. Can’t hardly write this post! This is destroying my life and I cannot work or be a mom anymore. People that are. Closest to me Gave up on me and tell me I’m crazy. I would rather be crazy! I have no gain from making this up!!! Please let !e know how to get the right test. Doctors here have no understanding!
Jolene, I can truly understand what you are going through. I don’t have Lyme disease but have suffered immensly from female problems over last 20 yrs. Have had 7 surgeries including a total hysterectomy.
Since Oct. 2014 have had excruciating pelvic pain, and we are still investigating the cause. Going to phys therapy but only helping slightly. I can understand what you are going through. Half of my battle with this nightmare is my husband and his family. I haven’t been working since this started and my DH is getting impatient about me going back to work. He just tells me to suck it up, that’s what everyone else does.
My in laws never ask how I’m feeling or offer any help or support. Thankfully I have friends, family, and my mom for support. I cry everyday due to the physical pain and frustration.
Just wanted you to know you’re not alone. I am from Canada too and know the difficulties with health care.
Write back if you want.
Christa
Hi Jolean…
I know this comment comes at a late date, but here goes…
I noticed that you mentioned that your dog also had severe lyme disease & was treated…anc since you haven’t (at least at the time of your comment) found anyone knowledgeable…and this could be a long shot, but maybe you could ask the veterinarian who treated your dog, if he/she could recommend anyone in your area that does ‘Late Stage Lyme Testing’ for humans?
Logically thinking, your dog probably isn’t the only one in the area with it AND whos owner ALSO developed severe lyme or ‘late stage lyme’…dogs & owners spend A LOT of time in close proximity…just seemx like it could worth a shot in your specific case.
As for others…I am ALDO a chronic pain ‘warrior’ & I completely agree with the letter.
I am ONLY commenting on this specific person, as our family had a dog who had severe lyme disease and it ended up taking his life.
Liked reading your post was a lot of info. I am 40 Wm here who was in car accident dec,2013. After the accident I HD severe groin pain. Have been to every doc I can think of they did surgeries, injections and so forth. I was dx with fibromyal years ago, oh with Lyme disease. Am just wondering if I really still have the lyme and they really haven’t rested properly. I hurt so bad I can’t stand it, yes have had thoughts of easy way out but with 2 small kids needing me I will suffer to watch them grow. I will talk to my doc see if they can run more test am so confused here.
If you were in a car accident, have them check for herniation son your thoracic spine. I had groin pain, along with a whole plethora of other problems from a spinal cord compression at t9 t10 level and no docs figured out the pain,got Diagnosed with fibromyalgia as well, but a few months later couldn’t walk, was soiling myself….. Had emergency thoracic spinal decompression surgery…… Almost lost my legs. Be careful thoracic stuff is rare. They never check it. Good luck.
Good luck with the tests. I listed my story on an earlier comment, so won’t go into details here, but I have been suffering from pelvic tension myalgia, what you might have, for at least 2 years now. I feel your pain literally and figuratively. It is a horrible condition. Doctors and the government don’t truly care about us lone wolfs, alt least I feel like one now. It has destroyed my life. Suffering from pain is not living. It is hell on earth. I feel for all of you and understand how lonely and depressing pain can be.
Please help me. I live in Australia. I have never been tested for Lyme let alone late stage Lyme disease. My problems started off with an infection I got in a third world country. Also like you I did have symptoms of a stroke on one side of my body before I caught this infection. I did not actually have a stroke but my arm was heavy Bd dead and I couldn’t write. I. eventually got better from my stroke like illness via acupuncture and TCM herbs and ginkgo. Then some years later I had a high fever and food poisoning like infection which has sent me downhill. Please tell me what your symptoms were and what the treatment is. thanks
Hi Krysten,
I loved your response and it seems like I’ve had a very very similar journey to yours (except for the lime disease tests) . I would love to exchange contact info with you if that’s OK?!
My name is Nadine, I’m turning 31 in October and I’ve been a chronic pain sufferer since January 2013.
I hope to hear from you and maybe we can exchange some stories and become friends .
Much love,
From one chronic pain sufferer to another!
this disease is a nightmare; feel misunderstood and alienated from everyone who doesn’t understand. Never been tested for this Late Lyme disease – though starting to have my suspicions. Have to find someone in my area to take me seriously, and want to help. That in itself seems a hard battle. Easier for them to blame it on mental illness, childhood drams – anything. The fight is so hard.
But thinking about this one – it’s a thought.
Glad you CAN READ!!! STOP WITH THE DAMN LYME DISEASE BULL!!
Ever heard of Fibromyalgia…or Chronic Myofascial Pain Disease?? Just to name 2 of a VERY LONG LIST OF CONDITIONS???
Just because the *UNKNOWN AUTHOR* didn’t give a *specific condition* in this letter doesn’t me he/she doesn’t have one….IT’S A LETTER IN RESPONSE TO ALL CHRONIC PAIN…which I’ll educate YOU on, is NOT always cut and dry for the person suffering.
I’M SO SICK OF PEOPLE WHO ARE NOT DR.’S SAY IT COULD BE LYME DISEASE…especially when I already HAVE a diagnosis of *SEVERAL* conditions.
Geeeeeezus hell….every know it all thinks it’s LYME!!
READ THE ARTICLE AGAIN…AND KINDLY DO AS IT SAYS….
Yes…I’m pissed….because it’s people like you and Tracy that piss those of us who have been through every thing imaginable to know end!!
Yes! Yes! Yes! There is someone on EVERY chronic pain forum telling us it is probably Lyme disease. I too am over it!!!
Thank you for posting this letter regarding chronic pain…The letter gave me a small window into knowing what my boyfriend deals with on a daily basis…When he wants to talk I will be his ear…when he needs his space I will respect it…I have pretty much been doing this anyway…but the letter you posted made it even more clear…Thank you
It’s very sad that people like you would actually be nasty to someone who feels compelled to help someone else. In this world of crazies, who would not think twice about knocking someone off, you will have so much negative energy directed at those who want to help. By the way, chronic pain is a name that doctors give when they can’t find what’s wrong.
Thank you! Just ran across this site. I had hoped not to feel this way even as a senior! It has been 21 long years! I had been “managing” the last 10 years on high dose of opiod medications. The new laws now force us to be removed from the last option. The Dr actually said,” I don’t know you so I have to assume you are selling on the street.” I have only had 1 parking tkt in my life! If I were addicted as he stated, I would be on the street buying, not selling. After the “pain management specialists” have succeeded in denying your pain meds, they tell you to go away, have a good life. I know there have been abuses, I saw only 1 Dr, only 1 pharmacy and did not increase dosage. As the letter states, we have tried everything, explored all possibilities, we still hurt. I am not even close to retirement age and have not been able to work for 8 years now. Except for my amazing husband, I would not be here today. I can’t look forward to any future. I don’t know if I will be here. The guilt of not being here for my children’s weddings and future grandchildren is an emotional battle. Just to have those who do not suffer from chronic pain to understand, I thank you. Please do not judge us if we are no longer here, just understand that the pain was just too much. Some day, a cure…. It’s too far away
Many of us on this forum have chronic pain issues and have been through so much pain and suffering and testing and dealing with peoples judgements, but we all have the right to reply to these forums in a respectful manner. Please allow everyone to respond in their own way. Rudeness is not needed.
I was dx in 2004. Been through all the blood work roller-coaster, medication, pt, and the everyone’s story. I would like to hear more from you. Please contact me. God Bless.
Been there, stay there and old 20some years of this .I just want sleep, Ya know.
Wondering how u are doing? Just read your post. I know how u feel. I want to off myself sometimes as the pain, weakness, and fatigue is all consuming. I want u to kno u are not alone and can reach out to me if u feel to do so. Sorry u are suffering. I wish I cld take it away, I know how the heart and mind bleeds over this agonizing struggle. Gentle hugs
I was diagnosed with CP less than a year ago and it has to be one of the worst diseases there is .I was diagnosed late in life. I am a 67 year old woman so if it’s true it can shorten your life span then what does that mean for other people diagnosed late in life. I known the pain can be horrific!! I have had natural childbirth, and I can truthfully tell you that this pain is so much worse. I Have the most wondeful husband and yet at times it seems he can’t really believe its as horrible as it IS. So PLEASE my family and dearest friends, please understand when i have to be in bed a lot. I am so sorry i can’t be the wife , mom , nana ,sister and best friends forever ,because I want to go back to those times. It is very depressing because my life as I’ve known it, may be over, though I pray it’s not. My PC isn’t caused caused
by alcohol so it remains to be idiopathic or dna. Do any of fellow sufferers stay have to be lying down somewhere for a law part of the day. I feel that some have doubt that this disease can be this bad so I just hope you never have to go through it. May the Good Lord bless us all. Thank all of you for reading my experience so far .
Hi Kristen!
Great post! I too had a similar situation getting my Lyme acknowledged by a doctor. It was the mark found later by my husband on my tush which made the doctors believe I had Lyme. Then after becoming very ill, the tests began to show Lyme and other co-infections, which was almost too late. I was being treated on the east coast for chronic pain as I was hit in my car at over 60 mph., while stopped in traffic by someone texting and driving. It was rough enough suffering from chronic pain in my head and neck from severe irreversible nerve damage, but to add insult to injury, I was bitten by a nymph (tick) and now add Lyme to my chronic pain. I wouldn’t wish Lyme on anyone and I’m so sorry for all you’ve been dealing with with this dastardly disease. But as you so positively wrote, we’re warriors, and that’s so wonderfully and simply stated. I’m going to adopt the word “warrior” in my writings and will keep you and the many people who have written such beautiful letters suffering from chronic pain in my thoughts and prayers.
Here’s to us warriors, never giving up, or giving in to this difficult lifestyle we’ve been dealt. One day at a time . . .or if that’s too long, one moment at a time. . .
Amazing. I have Fibro, I have read this letter to normals many times. I live alone, keep positive and pray.
I am going to check out the Lyme test you mentioned. This has changed my life, my friends and family have long ago dropped out. I was told by mayo after extensive tests Fibro, I suffer a great deal.
I too tire of people suggesting things BUT Fibro has no cure so I believe it to be something else.
I had hep c and went thru the harsh treatment alone and positive I am cured. I refuse to accept that my life will be in this bed, lying on ice and heat now. I tire of those that offer treatmebts I have spent my life savings traveling, going organic, holistic, spiritual full of gratitude my glass is half full. To be in constant state of illness and people tire of hearing this. I am tired of living with it.
I thank god I read this and will take one more test, the suggested high level Lyme test suggested above. I have great tenacity and am willing to try it. I suffer quietly with dignaty alone
Wow I have been through 7 back sergerys
And I live in pain 24/7.
I am lost for words, and don’t even know what to say!!! Although I feel your pain!!!
I work in a nursing home, and my patient over 400 pounds fell on top of me. I’m only 90 pounds, 4″11.
Never did I think after 7 sergerys almost 11 years ago, would destroy my life.
There was a time I was able to hide it and go on with my life, till 3 years ago
I just can’t fake it no more!!!
I have put so much stress on my husband my kids and my family
And it kills me, lost for words there.
I am ok with the fact I was hurt, and I’m so lucky and thankful to wake up everyday knowing there’s others worse then me
My whole life I was always on the go, and always doing what I did best,
Helping others, no matter what was needed!!!!
Now that I’m down and out I feel as if I have been so push away by everyone,
Please bare with me, I know I’m going from one thing to another
With the pain being so bad I can’t begin to tell you, I’m sure you all know,
After a while always making a comment how much pain I’m in, I started to keep it to myself, but no matter what, if I kept it from others, and said nothing family all thought I was ok cause I didn’t complain just can’t win!!!
The last 2 years the worse just all seems to be going down hill,
My memory has a big part with a lot of other things, also almost destroying my marriage, I know my husband is not handling it well it caused us to break up
Although he came back but it’s hard!!!
I just wish god I can’t say enough
I wish people could feel our pain!!
I don’t know who to talk to and I feel like I’m breaking down so fast, please any advice would be so nice
Thanks again
Wow. I’m going to speak to my Dr. about this. Thanks for sharing.
It’s also possible that they took levoquin or ciprofloxin and as a result of these drugs, which now carry a black box warning from the FDA have entered into a never ending hell of pain and misery.
The very first thing tested for in any unknown full body pain is Lyme, followed by MS, and a slew(at least 15) of other known and detectable diseases. So, yes, we the pain sufferers know all about Lyme and the various stages that it exists in.
thanks for caring and sharing, but as the writer said, if you know about it, we know about it.
Hi Tracy
I know I’m late to the party. I myself suffer chronic debilitating pain. I have arthritis, spinal degeneration advanced for my young age (SEVERE degeneration runs in my family….it crippled my maternal grandfather, & has essentially crippled my mother from her late 40’s/early 50’s, & I can expect a similar trajectory), bulging discs, a spinal deformity, a benign tumor along my spine (pain from pressure of it, difficulty moving properly as it’s in the muscle & not exactly small),
Sorry, technical difficulties lol. Continued…
…and i’ve been dx with fibromyalgia, though frankly I suspect I have MS. I also suffer from IBS type issues, bladder pain and issues, trouble regulating my own body temp, severe menstrual issues such as severe, severe pain, vomiting, heavy/long periods leaving me drained &I I suspect anemic, visual &I cognitive disturbances, and so much more. I’m in constant pain, I struggle with stiffness, weakness, and so many sensations I find difficult to describe. It’s hard. So hard.
I say this as someone with much.compassion for your plight…I don’t see how their comment was suggesting ANYthing. Believe me, I know the despair and heartache that comes with being misjudged, trying to remain polite through ignorant comment after ignorant comment, being treated like crap – like you’re a lazy, irresponsible nothing when in reality there’s one driven, strong, ambitious, competitive, smart, hardworking woman trapped in a malfunctioning and very weak, painful, stiff body…my prison. It hurts to be misjudged. So very much. So very deeply. It cuts like a knife. It’s demoralizing. It’s exasperating.
I truly got the impression that they were merely curious about the diagnosid. They mentioned their father becoming disabled from Lyme. So they seem to be aware and accepting of illnesses like these causing severe limitations in capability.
I’m so, so sorry you’ve been treated with so much ignorance, apathy, and perhaps even utter disgust, to the point where it’s expected.
Perhaps I am wrong; it was just my impression that they weren’t coming at you the way you took it.
Sending you positivity, strength, and peace 🙂
Chronic Pain Sufferer – I have all of your symptoms plus others…the one that stood out to me the most though, inability to control body temperature!! Not a common complaint for pain patients! I was told that my problems were related to a bleeding disorder that runs in my family mixed with stage 3 endometriosis…tried everything including 7 laps and a hyst/ooph…then more things became painful, and my son’s Hemophilia doc ran a quick physical test…BAM!! I have a connective tissue disorder called Ehlers-Danlos Syndrome (I’m a type 3 with a multitude of crossovers) When Dx by my own hematologist I really didn’t know much, but after doing the research…It was literally a book on my life!! It’s quite rare, causes hyperflexibilty in joints, skin, ligaments, tendons, muscles…etc basically ANYTHING in your body that is made with collagen! And most docs don’t even know what it is, so they send you for PT, which can be MORE DAMAGING!
If this sounds at all relatable to anybody on this site, please contact me.
It IS really rare, but can mimic symptoms of other diseases (chrohns IBS fibromyalgia cps etc)
There is no cure, I suffer daily, however KNOWING ACTUALLY IS HALF THE BATTLE – G.I. Joe
I have ehlers danlos and lupus as well as all of the fun crossovers they both come with and i absolutely believe mama t could be right are/were you “double jointed” and does your skin seem stretchier than non family members? If so i recommend bringing it up with your dr.
Have you had cipro or levoquin? That is what put me into the fibromyalgia group. Only recently has this one become known as a cause. There is no treatment, but sometimes knowing where things went wrong is a relief.
You absolutely hit the nail on the head!
This is exactly how I feel and I hope that others, especially my wife will read.
Everyone has a suggestion, or they want to review every thing you have done or will be doing. This anonymous letter is totally on the mark.
“What did you do today? My wife asks…cope…I don’t dare say as she wants tangible things. Laundry Supper Cleaning.
If she only really knew how much I hurt.
Perhaps Tracy wasn’t suggesting anything at all. The way this individual’s comment read to me, was that he/she was trying to sympathize with your particular condition, approaching your article and situation with compassion, trying to find ways of connecting with you/helping you by potentially sharing with you some of what her/his father suffers with… As in, “Is this what you have? I am sorry, I see my father suffers with it and it is terrible and you are not alone in your symptoms, despite feeling that way. I hope you, and him, find relief.”
I saw what you saw, my heart went out to Tracy , she by no means offered advise, she simply asked if it was Lyme, and her father has it and is now disabled due to it, so she’s learned about it. If he father is disabled ,I feel safe to assume she doesn’t have a cure nor offering one. But I also feel this letter comes from the place I’ve come from…, pain !..incurable pain =frustration . And when you so so used used to , ( and it appears the author is used to, everyone telling uou how you feel etc. You ASSUME that’s what many mean. Because it’s a norm. Was a terrible fault of miscommunication. It was some time ago, but I sure hope no feelings were hurt.
I’ve had chronic pain for 30+ years so i totally relate to most of you here. My conditions have varied and are not caused by an injury, per se. I started with migraines at 13 and have gone from one condition to the next. At this point, I am suffering with a pudendal nerve injury, have had a nerve decompression that didn’t work on that nerve, a bladder condition, IBS and a few other things. I am in the medical field and have had access to care without the battle some of you have had. I work 24 hrs a week so I can maintain insurance. I fight every single day, get up, put on the fake face and pretend. I cannot sit due to the nerve injury and most people don’t get it! If only you would juice.
Take vitamins, exercise, same ignorance you all have mentioned. I fought for a year to get a pain pump installed in my butt cheek that caused me more pain because I am thin and had med reactions. I now have been battling to get it removed for several months. Finally, I am gonna get it taken out but the catheter will remain in my spine. Funny, they don’t tell you that when you have it put in. But, if it means I could have nerve damage trying to extract it from my spine, then I don’t have much choice. So, that was pretty much my last resort, now what? I saw an article on body mind stuff on here. Most people blasted it but I don’t think whoever wrote it was recommending that it was the cure for everyone but exploring another avenue. We all know where our minds go and often it’s not a good place.
I’ve been there done that and done a lot of biofeedback which didn’t help much. I did read an article on nerve centralization where it describes how the central nervous system starts misfiring often after an injury. For a lot of you that would be too simplistic and may feel insultive and may not apply at all. For me, it makes sense to explore since the way my pain has changed, evolved and I have no options left. Anything I can do that is positive will be to my benefit.
The brain and CNS are very complex in the way they work so even if you don’t think there’s anything to it, it could be one more tool to use.
I, too, have had chronic increasing pain for 30 years. I have been trying EFT(tapping), qigong, self-hypnosis and meditation to help lighten the load. I have neck & upper spine pain as well as migraines more times than not. I know when I’m stressed,sad, anxious, or feeling negative the pain is intensified but I don’t believe the negative emotions are the cause. Sometimes the aforementioned modalities offer some degree of relief.
My pet peeve is the “Your Crazy/Its All In Your Head” attitude. As if the pain weren’t bad enough, I should feel guilty for having this control that doesn’t exist?
I went through the severe depression of “my loved ones would be better off without me” but have grown to realize that this hardship can result in internal growth for all involved (even me). I believe the old saying “everything happens for a reason” Our challenges can break us orwe can live with hope. Even if it is just that today I’ll accomplish something positive. I hope medicine can advance quickly enough so that we will all see a time of relief!
Hi there I’m sue.i have nerve damage through an operation that was 13 years ago.i cry most of the time its really hard.i feel so alone at times don’t get out much in bed a lot. I have a lovely family and my partner.if it wasn’t for them I would end it.
Hi Anonomous!
I read your post and my heart breaks that you mention that if it wasn’t for your lovely family and partner you’d end it. I can completely relate as there are days that I have felt the same, and keep going because of the supportive people I have in my life, and hope. I think I can speak for most if not all of us suffering from chronic pain, that we’ve all experienced the thoughts of ending it because we think that we’re worthless and more a burden, especially because most don’t understand and keep giving us “suggestions” at nauseum. One thing I have learned is that sharing our stories of being warriors and having that strong support system, we are actually saving lives by living. We ARE worth it, and life is short, and you are beautiful through your words and your sharing. Thank you for making my day today important, and giving me strength, because I know I’m not alone!
I have been getting tests, care, etc. at a teaching hospital—-I travel1-2. Hours to Philly—-there are some good diagnosticians. You can check out the Hosp and department— I’ve found that many of these places have state of the art practices going on, and papers they’ve written for Medical Journals, or books. The docs I saw locally misdiagnosed me and my son many times—-’twas all in my head & and my son created his disease due to school avoidance. All Crap. It’s still a long road if there is no cure for my and my son’s condition, but at least we can trust them.
Our final decision to go down there was they accepted our insurance in full- and my sister had a place where we could crash the night before or after until my hubby got some rest so he could drive us home.
Just my experience–each me and my son suffer from quite a few chronic painful illnesses. Life is a mess– I hate seeing my son suffer….good luck to you and hope that you are happier, healthier and stay strong fighting:-)
I actually was misdiagnosed for 8 years or longer and until enough people told me, “it seems like you have lyme”, did I finally take it seriously and get to a doctor that knew what he was talking about. I am grateful for those people that got on my case. I do understand what bothers you though, when people suggest things to me, as though I am not doing it, it does drive me crazy, but I just tell them I am doing it and move on. Well, not that many people have even talked to me since I started treatment. Also, I have a problem with people that try to “heal” me because it feels like they just really do not want to hear about what I am going through and if they can catch you up as though you are not doing enough then they do not have to engage with you about your feelings and symptoms. but this could be all in my head and I try to recognize that too. People have a hard time with other peoples ailments, don’t know how to react etcetera, especially when it is something without much understanding. I hope they find a cure for whatever ails you and me!
The Canadian Test for Lyme is Crap and when one is on Dissability then going to the US to pay for a decent test cannot happen
Do any of your med schools up there do this test?
Actually, no, not all docs test for everything. I have had to tell my mother’s docs what to test for because they never thought of certain things.
Every word you spoke,every feeling you described is me.
I agree with you.No amount of ,come on just tries helps,it just makes me feel worse.
I do make plans when the pain is slightly less,but then when the time arrives. …
I simply just can’t.
My life is consumed with pain.The simplest of daily tasks take so long to do,if they get done at all.
I personally feel the need to be left alone and deal with the pain as best I can.
Kind wishes are sent to you.I’m with you all the way.
That is very well said Dawn.. Well said! I have Chronic Pain issues for almost 40 years. To cure my condition I’d have to hop in a time machine go back to September 1978 and convince myself to not take a motorcycle ride that evening.
All those years I never took anything stronger than Motrin for my pain. Well meaning people always tell me I need back surgery. Two Doctors who I trust very much told me that surgery would not help and would more than likely cause more problems.
I did not start on strong pain meds until a few years ago and only as a last option. My good doctors have retired. I’m now stuck with a doctor who will not listen to me nor provide me with any options. Oh, she has covered her butt by writing in my records that she did. She also tagged me as a drug seeker. I’ll not live to see it but there will come a day when she will need good medical care. I hope that whoever provides it is somebody just like her.
For 35 years I worked in medical. There were Doctors and Nurses who if they ordered me to go into the gates of Hell I’d have cheerfully done it because I considered them competent people. Important note here; A competent professional does not mind being questioned about procedures. It’s the incompetent ones who get offended.
Dawn, don’t be an asshole. Tracy was trying to relate to what you were saying by clearly making a connection with a disease that’s close to her heart. So before you judge and go into one go your ” silent rages” try reading in which context she could have meant it.
I’m a chronic pain sufferer every day as well, so maybe if you’re thinking of responding the way you did last time…try waiting till you’re at the best time of day to respond rather than out of pain and emotion.
Because for someone who posted that info above…that was a contradictory way to relate to others who don’t understand.
Outworld Entity, well put. Funny how some people see/hear something TOTALLY different than someone else.
Thank you! It’s people like her who would most likely give chronic pain sufferers a bad reputation. Why such a chip on the shoulder? I suffer from chronic pain and don’t feel the need to lecture non-sufferers . Are there really SO MANY people who say insensitive things that you can’t handle it? It’s human nature. And again-I wonder why she gets so upset? A guilty conscious of some sort….
I fully agree with your sentiments regarding treatment suggestions; I am in chronic pain for the past 10 years, unbearable bone-crushing pain that is hardly relieved by medication. To all doctors and the “kind know-it-all”: Yes, I have been tested for everything from A-Z and have tried conventional, non-conventional, traditional and other treatment modalities. Please do not assume that patients are stupid. If you have a severe pain in your wisdom tooth, wont you go desperately in search of a Dentist the very next day? Similarly, a patient in pain, looks for relief in the same way that a person in the desert looks for water. There is no cure for constant, throbbing chronic pain. There is only an illusion of some temporary relief. Ignorance among some doctors is pathetic. I am a patient. Don’t refer to me as a drug addict. A patient who needs pain medication for Pain, is the same as a patient who needs Insulin for Diabetes: yet, no one refers to the Diabetic as being “addicted” to Insulin. Similarly, there is an Ocean of difference between a sick patient who needs prescription pain killers, compared to a well person who uses prescription pain killers for recreation. Please don’t confuse the two. Chronic pain and its causes is a complex multi-organ malfunction in the body that is extremely difficult to manage. Chronic pain is different for different people and hence, there is no single drug that can solve this complex problem. Will legalised Cannabis help? I don’t know. After 10 years of this, I need relief, but I know that relief is not around the corner. Thank you for an excellent, sincere article from one chronic pain sufferer to another. Warmest regards, Dr Ahmed Adam [South Africa, 1:30am, awake with severe pain…a normal night-time experience]
Beautifully written. Thank you for putting into words how I’ve been feeling for years. This letter and many of the posts from chronic pain sufferers has truly impacted me in such a positive way. I was feeling terrible when I would ask people to stop suggesting, judging, telling me I’m addicted to drugs, being the “know-it-all”, when what I need is empathy, understanding, & hugs (when it doesn’t hurt). It doesn’t matter the cause if the pain, just the reality that it’s there, constant, unexpected, & forever changing day to day.
Here in the US a few states have legalized cannabis for medical reasons. So in California, Colorado , New Jersey (maybe?) I have a terrible memory. It used to be wonderfully able to remember people, places, and events— now, very little. Could be due to chronic pancreatic, pain, chronic migraine, depression, anxiety— OR the meds to treat?
Anyway, I’ve read different views about the effectiveness of cannabis on pain. It appears that you just don’t care about the pain any more—-Also I think that cannabis oil has a bad side effect —again, I don’t remember— something having to do with the heart?
Once the few states legalized pot—- “Dr offices” sprang up on each street corner–along with boutique cannabis stores down the street with every form of the product—including brownies! I think that it’s worth a shot to see if it works, provided that it is safe and pure.
Good luck if you can find it—I hope that this or something else brings you relief from your terrible pain.
E.
I’m not alone… thank you (‘:
Dawn,
Thank-you for writing this price. “They” started diagnosing me at 13yrs. For a while I thought my name was guinea pig. Knowing there are others and they are trying to educate the heathy. It’s not always viable we do try to smile as you said heck. My mother constantly told me just put on a happy face and fake it. You will find something in the day to truly smile for eventually. Thank you. Again keep writing.
Nicky
Sorry typo visable
I also suffer from chronic pain, mine is pretty much all over my body because of a degenerative disease in my spine that has left me with nerve damage. I have been going through this for the past 8 years. I sit awake many nights in pain and watch my wife sleep. This gives me comfort knowing that she does not endure what I can not ever escape from.
I thank God for her and the love and support she gives me.
There have been times when I have had pain so severe that I can not even stand up. Pain so severe that it makes you vomit, then the usual 4 to 5 days of hospitalization that comes with it. People that have never experienced something like that can not even begin to understand what it is like to have to live each day knowing that at some point the medication will once again wear off and you will again need to take something that everyone says is so bad for you (opioid pain killers) then wait for them to start working only to have the fear of it happening again, or having the fear of running out of pain medication. I live my life in fear of the pain and it is so very exhausting. I do experience many times when I wonder why I fight this or even what is the point of fighting this from day to day.
Thank you from the deepest part of my being, for understanding this. I truly am sorry that you are like this as well, only someone else who is can really understand.
Just being able to talk about this with someone else who really knows what it is like helps to give me the courage and strength that I will need to face this again tomorrow morning when I see if I can get out of bed. Thank you
You are never alone through all this… There are a lot of us out here. I thought I was reading a story about myself when I started reading ur comment. However, I don’t have the support of my family or husband. I’m always told if I get outside and do something or stop taking the pain meds I will get better. It’s torn our family apart. All to often I wish there was a support group in my area and ways or ideas to deal with people that catagory all too many of us, as a druggie, pill head or user. I don’t abuse mine and take it as directed. I don’t need to go on the streets to buy them illegally. Yes I am prescribed very bad opioids and not proud of taking them. But wih out thwm I am not living, I’m merely existing with the sound of life way off at a distance. I can’t express how important it is to have family and friends understand the effect of their negitive responses. It makes every one of us want to just give up. I’m very happy that your wife understands, you are truly blessed to have her. Just keep your head up….
Thank you Dawn.. you have reached a level where I am not at yet. So Thank You for addressing the concerns of others and their ideas. As simple or complex as they may be. It’s hard to address a stranger, friend or family member that offers help. I wish it was that easy to diognose for us. I know one thing for sure, that every one of us that suffers this chronic pain every day should print out a bunch of copies of this letter. Then when people try to address or bash on you hand them one. This may help the next person they meet that suffers with diognosed chronic pain. Most responses that I get from friends and family is this, ” I know you hurt, but I do too and I keep plugging away”. They never realize that their pain may indeed be different then ours or their age may have a reason for their pain. They think if they can make it through a day, so can you.
Omg this feels li,e i wrote it, as i read it i cried
I agree. I have Avascular Necrosis and several other medical issues. I am tired of feeling defensive. People belittle my pain, or ignore me, or tell me to go walk or lose 30 pounds, or even mock my pain. Yes, a family member actually mocks me. I just lie about my pain now.
Hmmmph— I get it! I am in the same boat—and it is much easier for friends and family members to slowly disappear, as being in denial of someone’s pain is easier than sticking around to understand it. Has anyone here been referred to as a “toxic friend”—and because of that a friend “needed” to walk away.
(Hmmmm…..sounds like an article or quiz from Cosmopolitan magazine or Women’s Day!)
I have had chronic pain due to fibromylgia and arthritis and I am alone and have trouble even feeling like fixing something to eat much less do housework and my sister-in-law came down on me because she has fibro and she bragged how she was always able to cook meals. I just said I’m sorry I’m not super woman! I should have mentioned our weight difference which can make a big difference with chronic back pain- she is about 110 and me after all the medicine I am on am now 166, used to be 130. Maria I don’t know if you are on medication that causes weight gain but it is very hard to lose when we take meds that cause weight gain and everybody knows I don’t hardly eat anything. It’s something else a lot of us have to deal with when dealing with chronic pain. We are in too much pain to do a lot of exercising. I am running out of options on trying any new medicine. I’m joining lakeshore foundation next week where I can do exercises in a heated pool. I hope this will help more than anything . I’ll say prayers for everybody. I know several have felt like calling it quits. I know I have felt the same but am a Christian so that’s not an option for me plus I have two cats to take care of . If you are in chronic pain and live alone, get a cat or dog. They will help you emotionally with your pain and keep you from wanting to give up. Before I had to quit my anti-inflammatory med because it gave me kidney disease I felt well enough to volunteer at the humane society with the dogs. It helped me to emotionally deal with the pain but was in a whole lot of pain when I left and stuck in bed the next day. Animals help you! I hurt too much now to volunteer like I did but still stop by to pet a few. My dream is to get better and be able to help them again. My family has their own lives going on that don’t include me but I was there for them. I’m glad I was- I have a clear conscious, just pain everywhere else. Good luck to all and my prayers are with you!
I read your letter early this morning 9-16-15 in hospital in a car accident 25 year ago and 27 leg surgeries later I’m in pain 24-7-365 it consumed my life I lost my family my job and as a provider for my kids people say I’m bitter the only response I say I earned my stripes I don’t know your problem but your story is badass I hope you find what you need
I also go into an internal screaming fest when people recommend cures for my chronic pain. I’ve just gotten to the point where I lie about my pain, saying it is from a horrible accident long ago that i didn’t heal up properly from, but I don’t want to talk about. People accept/ understand that type of pain and my need to groan, and don’t offer snake oil and “helpful” advice.
I just printed a copy of this to keep on me when I am around somone who “knows, but just doesn’t understand”. My wife and I both have been suffering for years, but thankfully, she-and her pain was incredibly worse than mine is- has found SOME relief . We were both genetically tested (generaly, but also specifically) for a mutation of the “MTHFR” gene. The official name of this gene is “methylenetetrahydrofolate reductase, and estimated that 30%-40% of the population has this mutation…..blah bla….if you heard of it, not talking to you, if not, i strongly suggest investigating. Long and short, my wife has that mutation and knowing has greatly improved her quality of life. As for me, at the very least, I am happy to see her be able to play with the kids outside, even if its just a little bit. MTHFR
Well I have to say I’m pretty fed up wit the the pain im in daily. Diagnosed at 20 with ankylosing spondiitis, I’m now 29. I’m a builder and that involves all works, digging concrete mixing lifting hundreds of heavy objects a week, wiring houses, bent over working alottt, getting up and down to my knees to work at least 50 times a day, working up ladders etc etc I could go on forever, and always flat out. I collapse at night when I get home but if I didn’t have this job or had to work in an office everyday, I’d bloody well jump off a tall cliff or swim out to sea, dive down and breath out.. In fact I’m probably going to do this anyway as this is fucked up. Sometimes small things that happen can really make me want to go crazy in a bad way, but hell there’s always someone worse off than you. Sometimes feel better until you come back to reality with a big fucking bang as the pain lets you know what the craic is. CUNT!!!
I thought I was a tough guy
I hurt so bad I cry all day I miss my life
So sorry man. I totally understand. I used to wrestle with everyone, lift weights, loved just running and jumping around and having fun, theme parks, etc. Can’t do none of that anymore and it totally sucks 🙁 Sorry that you’re in a similar boat man. If you need someone to talk to feel free to reply back.
Interesting that you say its one of the first things tested for when thousands of Lyme patients will tell you the exact opposite; that not only was it not first tested for, but it was hard to even get a doctor to believe the test should be ran at all considering the rate if disbelief in the medical community sorroundng chronic Lyme disease. I don’t think Tracy was suggesting a cure nor was she being rude enough to “send you into a blind rage”. There is no need to be so cruel to her.
Sounded to me like she was just trying to relate, not suggesting a diagnosis or something you should be tested for. Human beings have an innate tendency to compare something unknown to something known. “Wow. This person expresses so many of the same thoughts and feelings my Dad does. I wonder if she has the same thing,” i.e. “Then I can understand her better. ” I do know what the author is talking about, I share every one of his/her experiences and feelings. A friend and I were just discussing yesterday how we want to scream at people who think they know what living with R.A. is like because they’ve got some osteoarthritis in their knees. I told my friend “At least folks don’t think they know about what I have, because it is a very rare neuro-immunologic disease.” However I did want to throttle a relative who called a couple of days ago… DO NOT assume I have not already tried naturopaths or osteopaths or supplements or traditional chinese medicine (or 100 other things!) After I told her my neurosurgeon IS an osteopath, and after she found I could go toe-to-toe with her knowledge about supplements, herbs, and natural foods, the wind went out of her sails. But she never asked me what it’s like to live with TM, or what she could do to help me… therefore I saw that the call was for her, not for me.
I offer my love and support to all of you out there living with chronic pain and chronic illness. I also try to remember that most people’s intentions are to be helpful, even if my pain and exhaustion make me want to scream . Peace to you.
This whole thing really spoke to me I bawled my eyes out while reading this to my husband. I know what’s going on with most of my pain but there is no cure and people keep yelling at me telling me to get another opinion or yell at the Dr and they don’t understand it’s only going to get worse it’s degenerative so they won’t operate and it gets frustrating so I don’t talk to anyone anymore. I lousy alot of friends because I can’t go out and do what they do I’ve been called boring but I get so scared to get stuck somewhere in pain and not be able to get comfort. They don’t realize the more they push the more anxiety I get and the worse I feel about myself. It has affected my whole life. Sorry for the rant it just felt good to get it out to someone who understands.
I know the feeling too. Bless you. I have disc degeneration, bilateral sacroiliitis, COPD, etc. and have lost my friends and the company of my family the same way. I live alone and am simply trying to survive now. You are not alone. Hang in there. Sadly, those who crucify us will have bad days some day too. I hope they will be treated better than we are.
Hello Dawn:
Unfortunately I’ve known that frustration for years. This may be a cold comfort yet maybe a little comfort. I have many reasons and diagnosis since being removed from my job in 2004 due to disability from Bilateral Sacroiiliitis to Chronic Sarcoidosis. Hasn’t changed a thing as I still suffer Chronic Pain and live alone, and Medicare doesn’t cover anyone to come in and help me. I’m a petite female who did physical labor at a wage of just enough to live on. Now my SSD isn’t truly, but disqualifies me for other help such as Medicaid and Food Stamps. Just enough, but doesn’t account for my home and auto taxes, insurance and utilities also come out of that. Since I have medical copays, I get very minimal healthcare and little nutrition. No extra weight is the bright side I guess. Financial worries add to my stress, adding to my pain I’m sure. Can’t afford Mental Health recommended. Family rarely visits now so I’m pretty much a recluse. This letter brought me to tears when I realized this is what I’m dealing with. I answered you bc I recognized your frustration. The only things my family ever say to me are “snap out of it” or “you need to get out more” and other things I wish I was able to do. I’m a grandmother btw, and have inflaimation in my eyes so please pardon typos. Just wanted to let you know that even diagnosis doesn’t always lead to mercy or human compassion. Yes I am now also diagnosed with Chronic Depression. After too much of my grocery money went to that Dr. and the side affects from the meds affected my BP and heart, I gave up and only see my PCP and Neurologist. I figure I’m no longer a working taxpayer, wasn’t on the system so can’t be, therefor can’t get help, so I’m just trying to stay alive and keep myself and house as clean as I am able alone. Not at all acceptable to the person I was. But the pain makes my shower dangerous and in this world, I think I’m a disposable person now. To my family as well, as I think they now consider me lazy. I hurt in many ways. Please consider me a cautionary tale. If you can help yourself not to become as I have, please do so. I don’t want to, but will probably have to give up my cable and wifi next. God bless all of you living with this.
I am so happy to read a letter about chronic pain that I can totally relate to on so many levels! I have had chronic pain since the age of 14 and I will be 40 in may. The author explained how frustrating it is and how it effects the life, of a person dealing with this pain, and I agree with everything he or she said. I have also tried everything and I get a little frustrated with people who say, “well you look fine,” or yesterday you were o.k. People who do not have chronic pain do not understand it is a daily battle. Sometimes it is an hourly basis. I have had severe idiopathic congenital chronic pancreatitis for decades and it takes it toll on you mentally and emotionally! Like the author said, if there was a cure we would know!
Thank you for sharing your own battle with chronic pain. I hope one day more people will be sympathetic to the pain we are forced to endure every day.?
I fully agree dawn, I too suffer chronic pain from neuropathy and frozen shoulders and have been dragged down at every step in life, called lazy by family when I couldn’t help lift a washing machine. Have suffered now for over 20 years with pain levels so extreme they defy all imagination. I have all but given up on life now as with new heart problems and skin that feels like it’s on fire I can no longer afford to live with diabetes as well. This paper is spot on but the very worst pain is that caused by the disbelievers.
To think that someone can simply ask a question and it sends you in to a “silent rage” is ridiculously overpresumptive of you. Tracy wasn’t trying to diagnose you, it was simply a question. A simple “no” would have sufficed.
Dawn, you nailed it. I’m a man and did construction work for 40 years. About three years ago I developed pain everywhere in my body. I felt and still feel like I have the flu everyday and moving pain here and there. Deep low level throbbing stuff. I went to doctors. They were just stumped.
I was denied disability because nobody had a NAME for my slacking behavior atributted to pain. It is sickening when a man complains of chronic pain and the general know-it-alls think he he should just suck it up and act like a man. I’ve been a man my entire life. Ex Marine, construction worker. You get what I mean here. I once nailed my finger to a wall by accident. A couple weeks went by and so was the pain. This pain is different. Unrelenting deep tissue almost to the bone nausiating stuff.
I have all the symptoms of fibromyalgia and it seems like I get to live out the rest of my days in an exhausted painful funk. So if I watch a lot of TV and gave no interest in much it’s because of the inability to even feel like the man I used to be.
Just remember, we in pain never invited it and an uninvited guest always overstays the welcome.
Finally I’m not alone, I’m 33 and had this for such a long time. It’s get to the point I don’t want to wake up anymore but I try keep strong for my children. Thanks for sharing your story xx
I read this letter and I started weeping, this explains exactly how I feel. Thank you so much for sharing. I am going to share with my friends and family. They have been extremely supportive in their own way and I appreciate all the support and love, however just because someone has dealt with acute pain in no way means they understand my daily physical, mental and spiritual struggles due to my chronic pain… thank you again
Dear Mary,
Hello, name is Kelly. I wish I could give you a gentle hug after I read your well argued position. I’m 45 yrs old. and I come from a family of doctors and a nurse. I have an analytical mind. I married an engineer and he always says “I could be an “analyst.” He is basically saying Id be a good engineer. He also says I’d be wonderful in HR, Human Resources Department..
So I understand all the common business acronyms and a lot of medical acronyms. That goes without saying.
Its ridiculous for me to justify my next point, but I want to be crystal clear why I get equally frustrated. I am Not a confrontational person. I am also Not good with any type of conflict. So, if I want to vent in this forum. That’s OK.
Howevever, I just don’t have the capacity to write well without becoming too emotional. So, I can only say to you “BRAVO!” I am a teacher. I love to write well. I was a sociology major in college at the University of California, San Diego, UCSD. San Diego has so many schools with similar acronyms. I was offended when people assumed I went to the Cal. State, San Diego university. I know what a university is vs a college; lots of people know the difference. And most people say dumb things without thinking. That’s normal. I love it when little kids string words together in a strange but creative fashion. That’s called LEARNING.
Therefore, I just bite my lip. I have been trained to teach. So if a friend says something a little off putting, I simply remind them about what the term Chronic Pain and Fatigue mean. I don’t need to tell them I have fibromyalgia. That’s one of my labels. I also have severe chronic migraines. I get a lot of sympathetic looks if I tell a concerned stranger why I’m wearing sunglasses inside during the evening and have worrisome body language. My husband takes care of me when I need him to. He is a good husband. He is not my caregiver. My 76 year old mom is a skilled caretaker because of her nursing background. I’m too old to rely on my Mom anymore. Ive only been married to my wonderful Michael for four years!!! Its my first marriage. Of course you can understand that a 45 year old with chronic health issues might not be able to meet her husband before being consumed by her illness. I’m blessed my Mom fought hard and long to get me to MANY prestigious doctors. We saw a fibromyalgia doctor In LA, because he wrote a good book on fibro. We also went to a doctor at UCLA’s prestigious medical center…..
Today is my birthday.Happy Birthday to me. I’m a happy person. I’m a pleasant person. But we all have our limits. I’m not happy about my many chronic pain issues. Im not happy that I have allergies and situational asthma either. So, obviously you get my point.
I’m currently in a tailspin flare-up because of my chronic severe insomnia. I was born with insomnia. My father is a retired cardiologist. He likes children when they are young. So do I, I’m a teacher. But it sounds creepy to say that about a man. My parents are Divorced and It was a horrific train crash type of divorce. Enough of that!
In conclusion, I just want to thank you for writing such a great summation of how those of us with chronic pain issues feel. Gaye’s compliment is perfect:
“I read this letter and I say yes, yes, yes. I whish this letter was published in every doctors office”
. Well, I can copy and paste your letter. I want to take the time to copy and paste your letter.BUT Im already sleep deprived. I cant do it. I’m fading fast. I cant reload my printer without my engineer husbands guidance.
So, that’s the point of chronic issues. They take away your ability to function like a “normal person.” I don’t know what a normal person looks like, do you? Thanks again! xoxo Kelly from San Diego.
thank you Dawn for your words. Its a club none of us wanted to be in and would be glad to leave, if we could. I am misunderstood everyday, and by those closest to me. I thank the author for this letter, it touched me, brought me to tears…its my life on paper, truly.
I too suffer chronic pain and your letter describes my life perfectly the hardest part is severe depression on top of it all l
god bless you, i love you very much and who is having pain , i sent you all the texas flowers,and sun in your home. pain makes people soo wise and strong, i am very proud of you how you handle and teach people what does pain means,,,lot of love and blessings,,,,?
First, I would like to thank you for the letter. I have wanted to write for years and don’t have the talent you have to write this authentic letter.
I suffer from chronic pain also, and this response made me crazy.
I am so sick of people who don’t take the time to listen when we speak. It makes you feel like they are minimizing our pain.
I have received this response so many times, I don’t even bother anymore.
I quit picking up the phone and have isolated myself from everyone. It makes you feel like no one even cares to understand.
Thank you so very much.
I have so much respect for you and being able to put so much into words. I thank you for the contribution you have made to those of us.,.that continue to portray a happy carefree life must go through on a daily,hourly & minutes w the struggle with a happy & greatful life! Thank you with so much honesty that I can now put in words my struggle wo sounding like a “Sickie”
Much greatfulness..E??a
@ Dawn and anyone else who nicely tells people with suggestions or input to basically f-off: from the perspective of others who CANNOT, as you say, understand what a person with chronic pain goes through, it is a natural and normal concept to want to help.
As a person who intermittently suffers with pain (I have TMJ disorder and flareups can be unpredictable and can floor me), I do NOT believe that those who suggest things that I already know are trying to be condescending. While I understand the issues that chronic pain sufferers feel, I also know that the way I react is within my control. Personal accountability is a good thing. So just because you’re suffering, it doesn’t give you free reign to crap on others for doing what is naturally kind and empathetic (like help you, of all things – how terrible that someone might want to help you! Yes, sarcasm intended).
You want those who aren’t able to relate to walk on eggshells in order to protect your feelings, but you aren’t willing to look at things from their perspective. That kind of attitude can encourage the stigmas that chronic pain sufferers face. So please, for the sake of all fellow sufferers, try to lose the attitude of entitlement.
Though I’m critical, I do mean this in a constructive way. There’s no point in creating division. We can learn a lot from each other.
I am very touched by this letter as I too suffer from terrible chronic pain and feel the same way nobody really understands and they won’t unless they suffer too it’s very difficult and I too find myself wanting to scream at things peopcarelessly say and I obsess over this a lot it’s a very lonely place living with chronic pain
Wow!!! Do I ever relate to all of this! I have recently been diagnosed with Ehlers-Danlos syndrome and it has been getting worse the last couple of years. I no longer want to go anywhere or do anything because I want my bathtub and my heating pad as close as possible. I also am tired of all the people that suggest have you tried this and have you tried that not to mention the out right anger that I get from some people. I sure didn’t ask to have this and I wish there was someway to curate but there isn’t. I just have to take it vantage of my “better” days.
Dawn, I live in a world like yours and why we feel this negative emotion inside us when people with good intentions gives us advice regarding ways to stop our long/insufferable/crap of life we have due to chronic pain… is FRUSTRATION.
Because we have tried everything, lost count of visits to doctors,, specialists, emergency department.. acupunture clinics,, massages,, exercise, meditation,, praying,,cursing,, crying like a baby,, sex.. even witchcraft!!! ahh….forget we have tried the whole pharmaceutical products out there,, and NOTHING>. We are just exhausted,, i was once told to just take a panadol like everybody else… or,,, ”’It’s all in your mind”.. ”oh you are so delicate” …” you are always sick ..are ya”. I understand you sister.
I appreciate your letter. I have chronic pain my whole left side, both legs. I’m stuck taking alot of medication that don’t work. Because my family don’t think I’m as bad as what I try to explain and feel like they don’t believe me I am now at the point that it would be less stress to stay away from them. ever since I became disabled I feel like they abandoned me because of the burden and now in middle of divorce. I sit everyday to a repeat every single day waiting for meds to start working. At 47 it bothers me because I feel my life has came to a hold and I can’t accomplish anything to make a better life for myself. I have no one to talk with and by myself all the time. Stress makes pain worse and I’m financially stuck home everyday. No one understands what my body feels like and I feel like they think I’m a bumb. This pain took my life
Oh so true! And you don’t wish to be impolite yet you hear comments behind your back and the Irish in me rages on and wants confrontation to defend all of us with invisible issues!!! I’m better to stay home, for PEACE sake!!! ?✌?
I feel the same way you do It helps to know I am not the only one. You don’t need to reply unless you want to. We are brothers
I feel exactly the way you do, I applaud you. People just don’t think .it’s hell on earth being in chronic pain and look fine
Same here. Was tested for Lyme disease. Stop telling us what to try. Stop telling us to find a better doctor. Unless you going to foot the bill for us to go spend more of our precious Time & energy meeting with a doctor to re-explain our history & leave with go try this doctor.
Start praying for us!
Send a card and/or even flowers to someone in pain. You’d be cherished!
Hey, Active Chick… here’s something to try. Lose the rude, unnecessary attitude. Read my other comments – I suffer severe chronic pain. I have room to talk. Why are you angry at someone for spreading the word about oft overlooked things, or tests that aren’t necessarily standard, or arming people with knowledge? Step outside of your selfish, entitled thinking long enough to remember that some people are newer to chronic pain than others and could use the knowledge in their quest for diagnosis and treatment. I understand firsthand the frustrating experiences that cause you to react so strongly and negatively. However, knowledge is POWER, and again, NOT EVERYONE IN CHRONIC PAIN IS THAT FAR INTO THEIR JOURNEY to be able to say “tried that already!” In fact many are un-/under-insured, so to them it is especially important to narrow down the possibilities before deciding what type and which dr to spend money they don’t really have. Wishing you peace.
Chronic Pain Sufferer,
I think you’re missing the point. This is not an information exchange forum. The original letter pointed out, among many other things, how exhausting it is to be told to try things as if we hadn’t already done so, or as if we hadn’t run out of resources. I am sure your suggestions would be welcome in a forum that actively seeks specific input, but that is not the spirit the letter originally written, and I think Active Chic is simply repeating an important point in that letter. Actually, your response to her was pretty harsh–she simply is voicing what we all feel when people overload us with suggestions. Consider that she has a point.
Amen :-).
I’m all for learning. And only say if someone who is not sick tells us what we should or need to do, please gift it.
The article says not to tell us what to do.
God Bless.
Thank You Mary 🙂
Yep, article says – the topic – not to tell us what to try ;-).
If someone has idea, please provide it as a gift – confirming their doctor approves of it. What a blessing you could be!!!
Thank you Chronic Pain Sufferer. Like someone else said earlier, you can have two people in pain, one is angry at the world and the other one actually gets when someone is trying to help.
Amen to that. Nobody who has suggested anything so far has been “telling” people what to do. All they’re doing us making suggestions in an effort to help. I get that this isn’t an info exchange thread, but I still believe that it’s human nature to want to help. It’s not like anyone is being forced to read the suggestions, and they’re only exhausting if one allows themselves to take them so personally and angrily.
To be fair the lyme blood tests are extremely inaccurate.
Tracy,
You are a Godsend!!! And send all my love to your father!
The WESTERN BLOT IS NOT ACCURATE. That’s why we get phantom diseases. I’m angry. I’m pissed!!!!! But not at you sweet angel. But at our government and medical community. Stay strong. Spread the word! Get your CD57 checked and get check specifically for co infections! The name has a stigma. Were trying to get late stage Lymes name changed to something more accurate. Big hugs and cheers from me! Love you!
Krysten
Thanks for the info Krysten. I had a brain scan last yr that revealed dots of gray in my brain. This usually indicates MS or Lymes but they said it could be from my frequent migraines. I had heard Western blot is not accurate so had a “more accurate ” test that came back negative. I will discuss the CD57 with my doctor as after so many years of worsening pain, any new glimmer of hope is appreciated by me. The doctors only know so much. Sometimes they learn from their patients and we learn from others with a different experience or perspective. I will search, hopefully learn new things & understand other perspectives to my last breath. When I had given up hope, I was doomed. I also want to thank the author of the letter for putting what so many experience into words so accurately. I sent a copy to my husband and adult children!
My new doctor says im not sick, so im only to vist him if im sick I have F, M, S, the last 30 years and the pain wont kill they say, but I will die with it,
Hi Tracy My name is Lisa 🙂 I was jus curious to know your dad’s symptoms of Lyme disease. I’ve been going threw a lot of medical issues for 8 months have had many hand full of test procedures done and the 6 doctors by the way 2 were specialist from ucla in califorina can’t figure out what exactly is wrong with me
Hi Tracy My name is Lisa 🙂 I was jus curious to know your dad’s symptoms of Lyme disease. I’ve been going threw a lot of medical issues for 8 months have had many hand full of test procedures done and the 6 doctors by the way 2 were specialist from ucla in califorina can’t figure out what exactly is wrong with me
\This is exactly what we do NOT want you to do. We have been checked, lupus, Lyme, immune disorder and vitamin deficiency…. we only get classified as fibromyalgia or chronic pain AFTER we have been tested for everything. It might sound like your uncle, but it is not. Thanks for assuming we are stupid and overlooked that one mysterious disease your great aunts second nephew had.
Actually, I recently spoke with a friend’s sister who has been suffering with debilitating pain, yet hadn’t considered lupus, nor has her doctor. She was pretty intrigued and happy to receive the suggestion because it might really help her. Nobody here is assuming that anyone else is stupid so get over yourself. You aren’t doing chronic pain sufferers worldwide any favours by acting like a condescending, entitled brat.
This letter is spot on!! There’s no more to say cause the letter says it all and exactly right!
HI TRACY…I JUST NOW READ YOUR POST AND WANTED TO TELL YOU THAT LYME DISEASE IS CURABLE. CHECK IT OUT.
Pain Like this can be lupus pain ra pain fibromyalgia pain doesnt go away just always there
Hello, My husband at age 39 has chronic pain. Started at age 24. I would like to send this letter to his sister Michelle. Some family just will not understand and can act very jerky about it. Please don’t be one of those family members. If you are give an apology and act right.
Thank you so much for this letter. I have been looking for a way to get my family and friends to understand this. Work is the toughest because I’m tired of hearing, “How are you today? Are you feeling any better?” No, I’m not feeling any better. I tried vacuuming the house and paid for it for three days.
I’m going to print this letter, make several copies and, rather than respond to people with words, give them a copy.
It is so frustrating. Even the doctors who now want me to try intense Physical Rehabilitation and Cognitive Behavior Therapy, which, as anyone with Chronic Pain knows, we will try anything. That being said, even a title call Behavior Therapy is offensive as if our pain is a behavioral problem.
Again, I am so thankful for finding this letter.
Sincerely,
Joseph Elliott
I understand!
Joseph,
You are right on the money. I’m tired of people telling me about behavioral therapy. I’m depressed and upset because I’m in physical pain all the time. Not the other way around. I was relatively happy before all of this $@!# hit me.
Pity party. I am unable to speak for ten minutes and right now, I can’t do anything. doctors treat me like a potential drug addict and yeah, I would have to be after thoracic surgery and it was terrible, to save my life. I quit life folks. I won’t tell a single person that I can fail. I choose not to do anything now to alleviate that anxiety and stress. As for me, I have to get a new doctor. I will try a little harder to get help, then I will just end it and move onto the next life.
This article is bs. I call people to tell them straight up, that I can’t do it. I am unable to concentrate at the moment enough to do anything knew or complex like doing websites, making a tv show from a blank piece of paper, or deal with complicated relationships.
I beat pain before but I had help. Now, they want to give me methadone or suboxone in a patch. That, my friends, is the path to methadone clinic with junkies who just want to escape because of whatever reason. Me, I quit fentanyl myself…I took the pain but I had used that time to prepare and try to feel better.
Now, I am back. This could be the end. I don’t fear death. I was right there more than once. I fear things worse than death. So, accept yourself. I did, for the loser that I am right now. I can’t be the pain so I lost. I don’t kid myself or try to act like it’s not true.
And FYI, I got more chest surgery in my future. there’s a node on my lungs that they operated on and tore me apart to save my life. I signed at DNR at 40 to make sure if something happened, it was over. I refuse to go through any of this again if I am to be treated like some loser junkie because I had major chest surgery. F them all.
I was looking for any excuse not to do it, that is why I am on here, but then I realize, accepting the end is better than languishing being a drain on people around you. I have things to do before then but it’s not far away.
If you got a family, then you got a reason to live and they depend on you. Thankfully, with my medical history, no matter what, if I had gone that route, well, my medical problems would have ruined other’s lives and put hardship .
Nothing wrong with me is my fault. I am not depressed, I am in pain. Antidepressants are dangerous to you and everyone around you if you take them and you are like me. If I am out of pain today, then, tomorrow, I am back to my life. I would like that but I refuse to beg for drugs from the doctor. I refuse to lower myself to that. I refuse to continue when the deck is stacked against patients and those feds will get what they want, even me at a clinic, managed. I would no longer be a patient.
If you are lying about the extent of your pain and it’s not up to 10, where I get sick like puking from too much booze, get off the medication to see where you are. That is the ONLY constructive thing I can offer. Plan it. Do it away from people. Don’t do it at a rehab or shitty detox. You have to do it alone and only you get through it. 7 days, I was up working. But remember, I planned it. I prepared for it. I spoke to people about how they did it. I got it solely from the doctor and NEVER the street. It was fentanyl. It took me 6 months to step down, and then I didn’t go back to the doctor for a script, made the appointment 30 days from that and used a q tip for a week with a very tiny amount, to keep me from getting sick. and then I through them out.
You see, if I wasn’t puking from speaking for more than 10 minutes and I could actually get through the day and not less than 10 minutes, I’d be fine. I am tired of asking for help and I am going to stop soon.
Don’t lie to yourself. If you have been lying to other people, don’t tell them to truth. Plan your own detox. Suffer the pain, and then go back. Do not do it around anyone. period. Opiates will not kill you. Benzos can. Booze can. remember that. I got off Benzos that docs lies to me about, took 21 days, and then it was fentanyl…over a year time. I did go to meeting for 3.5 years and didn’t even have a drink because I realized, docs were poisoning to me, and I was lying about it out of fear.
Look, if I was in great pain, I could go back. I left a door open for myself but when I went back, and I was the only person ever to detox themselves and come back to tell them about it. They treated me at first like I did something wrong. Now, even knowing that, they said no. DEA all over them. I read their journals before hand and they said they hate patients like me. Oh yeah, a shrink will need therapy after they speak to me.
Folks, if you can’t take the pain, there is only one way to go. For me, there is another lifetime so I don’t care. I just don’t want to leave the people hanging that tried to help me. I am working on that. I may not get it done. That would be my final failure and that’s how people will remember me, giving up. But if I wrap things up no…I am not trying to escape life. I have to escape the pain. It is relenting and no one will help me.
Tracy you are so right, people don’t understand when you are in pain and can’t explain where it coming from or causing it. I have chronic pain. I hate when people say did you try or do this for your pain. I get angry about it.
This is not directed at you, but rather a statement. My son suffers with unspecified GI issues and what is said above is what I’d like people to know as well. People always make suggestions, etc. I know they are being nice but it just make me, as a mother, feel like a failure. I’ve tried everything the doctors suggest and other therapies/treatments and nothing works. I cannot help him feel better. So, rather than sit around thinking of how to change it, treat it or make it better, I’ve accepted it. I accept that right now he will not be able to do what the other kids do , and that is okay. He is perfect as he is and those who truly love you and what to be in your life will accept you just as you are. If you can’t always go to the park, if you can’t participate in school, or if you’re a little grouchy because you’re in pain, that’s okay. In my opinion, acceptance is sometimes the best course of treatment.
To the author is this paper, thank you.
You did exactly what this letter asked you NOT to do. Of course she’s heard of Lyme disease, it is one of the first things doctors check on us. We hope it was that simple.
Please don’t think we haven’t heard it all…..ALL! We know obscure things about every disease it could possibly be.
Why are you people so angry?? !!! Surely these lovely people are just trying to help!! My Husband has lived with chronic pain for years,but thank God he is not like you moaning lot. I truly hope you find something that helps,I know being in constant pain must be awful but maybe a little positive thinking might help Mary C
Couldn’t agree more. Part of the journey towards wellness lies with hope and positive thinking. Not that it isn’t natural to get angry or frustrated when suffering! But to trash on the kindness of others really won’t get a person anywhere good.
She described me perfectly and I do have lyme disease. To be honest I thought I was reading a letter by someone with lyme the whole time. Crazy
i loved this article . i have the auto imune desise rheumatoid arthritis and am in constant agaorny all over. y body inside and out . and you are right. people always tell me i dont look ill. so therfore i must be lieing. like you i get endless people telling me to try this or that. i sadly have no one to help me . no family no friends . if i want a cup of tea i have to struggle to stand and walk and then lift kettle. your right you cant think when the pain signal is always going off i your head. sleeping is practicly imposible too i maybe get ⁴ hrs every two days. its nice to hear im not the only one who wont go out if i cant sit down in agorny every half hr or so. i spend all day indoors in chair depressed alone and in agorny while my paralysis gets worse . wish i could chat to you anonymous. x
Obviously you people still don’t get it and I am done being polite.
You have NO IDEA WHAT YOUR TALKING ABOUT SO READ THAT LETTER AGAIN AND KEEP YOUR FUCKING MOUTH SHUT AND YOUR CURES AND OPINIONS TO YOUR SELF.
After seeing this post, I’m tired of being nice too. Maybe you would rather people tell you to shut the fuck up, suck it up and deal with it? People like you don’t deserve a cure. Maybe natural selection is taking its course.
What does it truly mean when your wife of one month says “IF fedex brings you those pain pills tomorrow; we are done?” Having done many good things for her and never causing a problem; from day 1!~
I also had Lyme’s for 6 years undiagnosed. It destroyed my joints. Yes please RE read this letter you obviously don’t get it. I don’t want this life. Life made me this way. I understand you don’t. Be grateful!
Don’t give medical advice to someone with chronic pain. They’ve already been through what your about to suggest.
Read the letter again.
Fibromyalgia, chronic sciatica, which can seriously affect ones ability to move, to be able to lie down and sleep; and pain in various regions of the spine, and not to mention sensitivity to touch all over the body etc etc, can indeed make you feel in a lot of pain, discomfort etc, exactly the way the author of the original letter had described. And has nothing to do with Lyme, in fact some medications like Lyrica can have strong side effects that can mimic many symptoms of Lyme, including burning pain under skin, serious sensitivity to light touch, especially in the mornings, sensitivity to light etc etc.
Meant to help YOU not as insult: People suffering for many years and having been poked and prodded by countless doctors (most of whom have the worst bedside manners), last thing we need from anyone-unless he/she is a doctor-is another suggestion of what is wrong…IT’S INSULTING!
If you think that someone suffering in constant pain, for years, hasn’t read and read again and again and read again; and hasn’t asked one (probably distracted and rude) doctor, and asked him or her again and again; and asked another doctor and another, about YOUR suggestion, then you must think that chronic pain makes the sufferer an idiot.
If you can’t find it in yourself to come to understand THIS, then please, I beg you, spend as little time with a CP patient as possible.
If you CAN understand, then please, befriend one of us; most of us have lost so much and so very many-leaving us lonely.
Although most would be, I’m asking YOU personally, please don’t be insulted
Thank you.
I completely agree w u “Author Unknown”. People r so frustrating with this issue, wanna put thier stupid 2cents in (ugh!) & this Letter was NOT for Diagnoses or Homepathic remedies (SMH), or diet, exercise suggests. I think ur Letter was so on point. I can’t Thank You enough for posting it. AMEN!
My very first thought was you just read a letter stating how someone with chronic pain feels and you post something that annoys them. Did you even comprehend what was written. I am 52 years old and have had chronic pain since I was 37. I am so annoyed by people that try and tell us how to act and feel. My sister told me that I should be happy and not bring other family members down by complaining of my pain. When I am around them I should be cheerful. She said to me there are children with cancer and such and are so grateful to be here and are happy. What a thing to say to me. Why does she always ask when I call how am I if she truly doesn’t want to hear how I really am? To me, she doesn’t want to really be bothered or is tired of hearing it. Well I am tired of trying to explain how bad this is!!!!!!
Lyme disease can be treated and cured but chronic pain can not be cured but there are things that probably can make it more bearable to live with like a hot tub.
You clearly haven’t ready the above. If you know about it, then we more than likely have searched the hell out of it. Being in pain all the time is beyond comprehension or explanation. If you have to ask or tell us what we have, then you can’t possibly understand. We have explained every aspect of our pain to all the doctors we have come across and still we have nothing that can help you to understand.
Thank you for posting this letter. It is well written, and informative. Even my wife of 25 years found your words insightful, it helped her to understand some things that I go through. I am one who will stand and fight for what I want, or need. I am ready to face off with what ever that may stand in my way. That was until I was stricken down by something that attacks from within, striking joints, and bones randomely, and without warning. You are right when you say no one can understand, unless they have been sticken. I, like many others, carry on a daily battle to appear (normal), or our best impression of what normal may be.I have found the world in general to be ignorant, and they for the most part, do not have the desire to take the time to try to understand. I will show some of them your well written letter, and hope for the best.
Thank you for taking your time to care.
Yeah, I agree people don’t seem to want to take the time to understand us. Which is discouraging. Personally, when I don’t understand someone, I try to research & learn.
Praying for our healing!
Isn’t it amazing how the people that love you the most are the ones that say you have to get out of bed and use some will power! My boyfriend says I should get up and do some things around the house, like vacuum (did I mention that I have chronic migraines 15-20 days per month) oh, and he knows all about migraines. I’ve been on disability since 2006 and that still doesn’t convince him. Then to top it all off, he screams and yells at me that I can’t just lay around! I have to get up. I make him depressed!!! Can you say narcissist? How do you convince them? I’ve given him articles and he throws them out. I’ve been with him for 3 1/2 yrs. and they’re getting worse. I tell him they’re because of him and he says “what a nice thing to say.” I panic when I get a migraine because of him. I just don’t get it.
Will he go to all of your dr apps, tests, hospital stays, psych visits?, specialist visits—– got hubby to do this and for our teen son’s condition. He gets a lot of info and perspective from them—-luckily he has a job. With flexible hours. And a boss who has a wife with a chronic illness and kids.
He understands all about our conditions, but that doesn’t change the reality that our life has changed, he gets to do more work around the house, etc. So now he’s been angry & pissy & and telling me to ” push it”, just do it, why are you so nervous?
Gah—-never thought that we would be challenged with all of this illness— it really taxes our marriage. 🙁
Your comment resonates so much. I’m so sad to hear of another suffering and the stress it puts on a marriage. I wish I could help you in some way.
I’m being selfish by commenting here, but I do think, maybe, I understand some of your trepidation. I know I’m responding to you just to make myself feel better for a moment or two. Still, I do hope my words help in some way.
By 24 I was COO of a mid-sized company in Boston where I had
moved long distance to further my education and remained. At a very healthy and very active 39½, married with 3 awesome children, president and CEO, absurdly happy, my family was blind sided as I became an overnight CP sufferer and, so far, I haven’t been able to return to employment of any kind.
That “beginning” is now just over 16 years ago.
To her credit, she held on for the first 10 years. My wonderful loving wife, went right to work even as all our dreams and aspirations slipped away.
At 55½, all is lost-except hope. Living alone in poverty, my family long since distanced, has taught me some of my greatest lessons.
It has taken me over 3 hours to write this thus far so I’ll just close with this: Whatever bits of strength you can muster, whatever courage to move forward that you can summon from your depths, use it first and foremost most to hang on to your family. And, well, just my deepest respect and best wishes and whatever may come-congratulate yourself and those you love for doing the very best that you could and never allow yourself to lose Hope.
I don’t think he’s healthy for you darlin. I’ve had issues with guys but not THAT mean. He’s VERY narcissistic and they don’t change. It’s not my business but if you’ve grown up in this environment or have been abused or had any kind of trauma, it’s not uncommon to put up with this type of guy. I know because I am YOU. Ha! Also though, stress makes pain WAY worse…and MIGRAINES…HELLO!!! Bless you! Please do find your BEAUTIFUL self esteem and realize that you deserve BETTER!! I know finances are HARD with disability but it always works out.
Forgive me for intruding. He’s so not being nice tho!! Girls gotta stick up for each other & stick together!!! Lol!!! Bless!!! :))
I would throw him out
Beautifully said..
That perfectly describes a chronic pain sufferer’s life. Thank you for taking of your precious time and energy to share with the world what our lives are like. —– I lived in chronic pain for approx. 18 years with Endometriosis, Fibromyalgia, Restless Leg Syndrome & Chronic Fatigue Syndrome. Then through the miracle of prayer I recovered 85% and have thoroughly enjoyed an almost pain free live for the past 5 years until 2 months ago when I woke up one morning with severe pain in my lower back; the pain went away during the day, but was back the next morning and hasn’t left since. My husband & I went to the ER 5 times in the first 21/2 weeks or so, and everytime they gave me Morphine or something similar to that for pain, and sent me home. As soon as the Morphine wore off, I was back to square one. We’ve been in and out of our GP’s office, my gynecologist (thinking it may be Endometriosis on the kidneys) and finally on Friday I saw my chronic pain specialist. She went through my medical history to search for some kind of clue that might point as in the right direction. She came across a letter from my old GP 10 years ago that said that I had been diagnosed with LPHS, but the Urologist who diagnosed me with it, overthrew his own diagnosis a year later, saying he didn’t think it was that after all. Now my doctor is thinking that it may be that after all. CT scans and ultrasounds show no kidney stones, but I’ve had blood in the urine several times when tested. I see a Urologist again Oct. 7th; hoping and praying for answers from him or even a definitive diagnosis. Any suggestions or ideas would be greatly appreciated. Thank you and God keep you all in His tender care!
Praying for you!
LOL AT PRAYING!!!
Couldn’t agree more. TBH that totally pisses me off when people talk about praying for me or say “Sending prayers”. I prayed for many years and realized that it’s all a crock of BS.
What is LPHS
i am 19 and have lived so many years of absolute, pure misery. i wish i had found this before, really helps make me feel less alone. it is a shame that there are people everywhere that have not found this much needed support, chronic pain needs more recognition.
I’ve had chronic pain 2 and a half years I feel 4 everyone on here it’s very depressing there’s days I just wanna cry I have a feeling this pain is making me go crazy :/ but ima try and stay stong good luck to the rest of u!!!!
I am grateful for this letter. I’ve not been able to put my thoughts into words as well as this author has. I have posted this to my facebook page and asked those who care about me to read this, and get back to me with any sincere questions or concerns. I hope it helps my friends and family. It sure helped me! Ha! Gentle hugs, Rebeca
Did your friends & family read it? Agree with you. This article explains everything way better then I’ve been able to.
Thank you so much for this letter. I cried when I read it because it is exactly how I feel. The old me is still here, inside this body, wanting to get out. I hate that I can’t do what I use to.
Kelly, I’m crying too. This put words exactly to what I experience. I am trapped in this body too. I hear about people hiking and kayaking. I want to do this again so badly!
I too feel the same way I want so bad for those around me to have some understanding I am a prisoner to my body. I want so to free from this torment, it has been over 25 years I was once the life of the party the fun girl, I daydream of being that girl it was so long ago pray for me.
I will pray for you Beverly.
~ Chuck
I was sent this by my husband, who, after living with me for the 6 years following a car accident that left me with bulging discs pressing on the nerves down my entire right side, with chronic pain now really, as much as is possible, “gets it”. That I had just had a baby and was at the happiest time of my life was the most difficult and devastating experience: my now 6 year old son does not understand chronic pain, nor should he have to. In addition to my guilt over this, I am now unable to provide my son with a much wanted sibling. I have never read anything that so accurately descibes something that I si struggle to comprehend myself. The friends and family that I have lost along the way might have benefited from reading this..perhaps it is not too late. Thank you for you eloquence. I sit here in tears.
Joanne no matter what happens this part of your family will always be there for you.
We are only sorry that we cannot do any more to help you.
If we could wave a magic wand we would.
Reading this meant a lot to us as we know how you have suffered for the last six years.
Now we can relate to this and yourself.
To an extent we have been through a lot of this with you and will carry on doing this .
We both love you so much
I could have written this letter….these are my words….this is my life..thank you for expressing it so well in order for me to share it with others…Peace
I agree this is word for word exactly how I feel and think…Thank you for putting into words how we feel you did a great job and hit every point perfectly….
Some interesting info on chronic pain’s somatic origin from New Scientist https://bit.ly/iJlgeH –More evidence that chronic pain patients most likely are reporting symptoms whose signal originates in the brain(vs nerves,spinal cord,bones,or other body based origins). If we can treat the brain and it’s defective programming causing the individuals tp perceive pain that isn’t there,we will have defeated chronic pain. Just think of all those skateboarders/snowboarders/ski racers/boxers who live their life relatively pain free. This is because what a chronic pain patient would perceive as painful they feel as normal everyday aches,strains,and stiffness. Chronic pain patients can access treatment already,such as hynotic suggestion and biofeedback machines, yet this requires too much effort on behalf of a patient with a disease that is caused by low tolerance to exertion,effort,stress,and everyday chores.
Pain is a useful tool, despite being in it all the time due to a spine disease and other illnesses, if I were able to completely eliminate it I wouldn’t know when something was wrong. Athletes CHOOSE to be hard on their bodies and ignore pain or in some cases pretend to ignore it and self medicate without proper supervision. I am from a football family ( I played myself, quite well might I add till age 16, when I could no longer ignore the crippling pain I endure daily now ) we were taught to play through the pain, now I use a cane at 26, I have a wheelchair bound uncle, and severely crippled aging family members. They ARE in pain, and regret ignoring it in their youth, I regret listening to them as a child as well, I doubt it’d be this bad this soon if I had listened to my body, and not my family… Perception and how you tolerate pain is one thing, but you can cause serious damage when you believe its all in your head and you are above it. Pain is an indicator of a problem, if you ignore it, you may ignore a serious injury or illness, and suffer for it the rest of your life. Do Not Tel Me Its Mind Over Matter. A decade of suffering begs to differ. Also, NEVER tell a chronic Pain Sufferer that you feel seeking hypnosis or a biofeedback machine ( easily obtainable if you have money ) requires too much effort on behalf of the a patient, you have no idea what a person in chronic pain is willing to do in order to get relief, I for instance have had dozens of painful, invasive treatments and experiments in hopes of fixing my problems ( alas there is no cure for my disease ) all in hopes of minimizing my pain, I have traveled hours on end just to get to certain specialists and surgeons. There is more effort expended here than it would ever take for me to make an appointment with a hypnotherapist for a session. PLEASE unless you feel it, don’t comment on it. One research study does NOT make you or them experts, and honestly when I read this, all I could think was you have NEVER gone through a pain you knew would never stop, and have assumed that since athletes ( who pay for their reckless and extreme lifestyles later in life ) are able to play through the pain and perceive it differently while in their prime and making sure the entire world knows it, that people who are not must just be weak, and unable to cope with “normal” pain because it requires too much effort on their part to go see a mind bender or someone who believes an electronic device designed to monitor the way your body functions will help someone cope with their pain ( yep, it totally tells someone when their muscles are tense, what their temp is, heart rate and so on… but it does NOT help someone in pain )… it may help them figure out what is going on with their body while in pain, but you seem to miss the point where people with chronic pain ALREADY know their body, and whether there’s a machine telling me I’m in pain or about to be makes no difference to someone with an INCURABLE disease… For example… I KNOW when I’m going into a flare up, and KNOW there’s nothing I can do at all… the pain will come and I will have to cope, plain and simple. A biofeedback machine is useless to anyone who already knows whats wrong, and hypnosis designed to trick your brain into not feeling pain is a foolish notion for anyone who needs to use their body’s pain cues as indicators of more serious issues.
How long did u try biofeedback ? I’ve been reading on it a bit. Going to try it soon. My attitude is Im going to be healed. I refuse to hear or think otherwise. I’m not giving up!
I started trying essential oils & finding some relief.
Acupuncture & cupping bring some relief too. Bought a cupping kit, so I don’t have to go in & pay more $$. Use it 1-5 times a day.
Please believe you are going to be healed. We all are.
I’m very curious your experience with biofeedback. Agree everything costs so much $ and need to budget each thing out. Praying for you!
WHAT A JOKE!! Thinking positive is GREAT… but you’re fooling yourself if you actually believe you can *think* yourself to be pain free!! Good luck with that one…and yes…I know. For more than 16 yrs my life has consisted of NOTHING but dealing and trying to find a *cure* for mine which has literally made me disabled! Spent THOUSANDS of dollars over the years that has literally put my family in the poor house and I’ve almost lost my home a few times on this lame brain b.s. ideas and *all natural remedies*
I am with you on this “think positive” crap. But your post scares me so deeply. I see your post was posted a few years ago, so I have no idea if you will receive this at all. I have been is serious pain for 5 years, so not nearly as long as you, but I really don’t feel I could make it as long as you have. I have had abnormal EMG’s and a muscle biopsy that showed mitochondrial disease, but no name for my pain and no way to convey to people to get them to understand how I am truly not living. I am 51 years old now. Now I find out I have breast cancer. I can’t take more. I don’t know how I have made it 5 years as it is. The years pass and I can’t seem to scrape up the energy to travel to find a doctor who will hear me. I have been to Stanford (pathetic) and UCSF another (even more pathetic) place that has no interest other than making money. They have written much false commentary in my records that I can’t have removed. I need a better quality of life, I can’t keep it going. I wish for you to find relief, you have endured too long to not.
wow mate, you are CLEARLY not a chronic pain sufferer, and you are the exactly the kind of person that makes life hell for the rest of us – I have NUMBER 2 on the national organization for rare diseases most PAINFUL conditions – so stop saying the word ‘somatic’ when you have no idea what you are talking about – this comment is HIGHLY innapropriate here. Everyones pain is different, but you sound like every quack who doesnt care enough to research a disease to treat it.
R.R…..I thought the same exact thing as I read “Mates” post. It is very clear He has no idea what people deal with here. Its best Mate if you do not post anymore, you clearly are out of your field of expertise….
R.R. explain how some people with severe chronic pain, get temporary amnesia and don’t experience the pain anymore… what do you think does that if it is not somatic. NOT saying always and everyone, but in some cases it is. And with all the money and time you might have spent on docs and drugs, etc., what do you have to lose?
You’re assuming the chronic the patient has bumps and bruises as the cause of the pain, such as skate boarder, etc. I invite you to live in my body and experience the pain of CRPS/RSD and reconsider your insensitive post.
But there is hope for us !!!
I’m going on 6 months & reading people recover from this. We have to. Praying for you.
You are either blind or a complete idiot. Did you read anything written here? Do you understand English?
” yet this requires too much effort on behalf of a patient with a disease that is caused by low tolerance to exertion,effort,stress,and everyday chores.”
REALLY???? Do you really think these unfortunate souls whose lives are destroyed by paiaren;t motivated enough by years of torture to try a freaking biofeedback machine? Chronic pain is NOT caused by “low pain tolerance”. Nor is it due to inactivity or laziness. Skateboarders, skiers, athletes and soldiers all suffer from chronic pain. I have read a lot of moronic statements in my life and kept silent, but your reply was so incredibly, unbelievably insipid I had to respond.
Kathleen C…. don’t say that biofeedback cannot help. Read up about how pain has a memory, and for some people it gets worse and worse. It can come on during times of stress, or for people who tend to be anxious, or due to childhood trauma..abuse, etc. Even children who have been neglected by a parent can end up having unexplained pain later in life. Remember pain comes from our brains. So if your brain is sending you a ton of pain, MAYBE there is a way to undo it. Maybe there is a psychological reason, not physical. That’s all we are saying.
Wow mate
Are u serious? Hypnotic suggestion and some bio machine that merely monitors your body?
This post is awesome – I would log in to Facebook for the first time in over a year just to post it… If only everyone didn’t believe me to be a hypochondriac. My doctors don’t believe me, so I’ve tried a fair number of methods barring the very strongest of painkillers.
My problem is that I have a trapped nerve(s) in my back. It used to be just debilitating back pain, but the job I have been doing for the past year has been steadily making it worse. Just last week I had a full blown row with a girl at work who started flatly refusing to do the very task which torments me so with excuses that changed every night, meaning I had to do it all night long every night. It’s that bad.
Anyways, in the past year I have developed a bunch of new symptoms… A dead/ tingling leg, the tremor in my hands has got far, far worse, the pain has not only increased drastically but also changed to several different types and my hand recently started going dead and tingly too, and worse than my leg ever did… Worst of all my hand no longer moves when I will it to sometimes, which just makes my job harder and consequently more painful.
So my point is this: How in the HELL is hypnotherapy going to help with THIS? I’m fairly sure that convincing my brain that this crap isn’t happening is not only dangerous, it’s not going to make my limbs function any better either. I guarantee that thousands of people will have stories just like mine too.
Not to be mean, but… Go and post on a forum topic that ASKS for help, not one that specifically tells you NOT to try and give it!
Jade
P.S. I realise this is completely contradictory lol so apologies in advance to those who have been there and done it… But there is one thing that has helped me. Don’t get me wrong, I am a long way from being pain free, but I would certainly be jobless without this stuff. It’s a herbal gel from Thailand called capsaicin, it’s basically deep heat but waaay more intense.
If I can bring some relief to just one person, it would be well worth the half hour I just spent writing this haha!
Happy new year to all… Or as good as it’ll get 😛 x
Capsaicin is the ingredient in hot peppers that gives them the spicy heat 😉
I have had chronic pain since 2004. It is daily, and like the letter stated, I may be able to walk the dogs today, but does not necessarily mean I can do it today. Lately, we have moved. With that, comes a new doctor, who “has been in the business 20+ years, and has seen what narcotics do to a person.” He is unwilling to issue me my pain meds because he is against narcotics. Yes…. time to find a new doctor, yet again. Being new in a new city is difficult to find just the right doctor. Pray for me that I am able to find a doctor who understands chronic pain and just what it can do to you.
I’ve been very ill these last 2 weeks. When I called the doctor to get his intake on whether or not I should go to the ER or have him see me, he again brought up the narcotics and thinks I’m just going through withdrawal. I need pain meds to MAKE ME FUNCTIONAL EVERY 6 HOURS. I’m frustrated not only with the doctor, but with the pain that seeps in my nerves, muscles, tissues, spinal cord, hips, groin, legs, shoulders, lower back and neck every waking hour. The pain will wake me up from a dead sleep, as well. I would like to see the medical profession with this kind of pain and see how they deal with it. Don’t talk down to me. Give me hope…..
well said !
Susan I can totally relate to what you are going thru. I moved for a year and had to change/find all new doctors and instead of seeing 2 that worked together for my pain mgmt I had to go to 5 separate ones in TN. Luckily I’m back in FL at my reg drs but dint give up no matter how frustrating it is. As to this letter it hits points that I’ve been stating for the last 4-5 yrs w/o “regular” ppl hearing. I posted in hopes that they will c once and for all how this effects us. Keep your chins up and prayers to all!
Thank you ever so much for your words of wisdom. I have had chronic pain (RSD/CRPS) since 1993 and I could never put in to words what you have done here. Thank you for saying what I couldn’t.
Thank you and God Bless,
Michele
I am so empathetic with all of you who suffer from RSD, or any other chronic pain. I was in the prime of my life. I was 42, the median age of developing RSD. I have a great husband, Bob, my kids, Dustin who’s 27, Cody 26, and Raechel, who graduates from HS on Friday. Before RSD, I was the picture of health. My daugher was almost 10, and the boys were graduating from HS, so she had to take care of me, along with my Mom, bless her, and my darling husband. The guilt you feel for having the disease, causing family to have to do everything for you. The pain, and complaining, the lack of sleep, lack of drive to do anything, as you know it will cause more pain. I’m sorry for the lady who suffered a car accident, and had a baby. She needs our prayers. I hope in the near future she will be able to have that baby she wants so bad. I pray for all of you who suffer. I take Electronic Convulsive Therapy, only 2 times last year. It gives immediate pain relief, like you were before RSD. It sends messages to your nerves to stimulate them, and away goes your pain for months on end. Please ask any question you have, and may ABBA, GOD, YAWEH, be with you.
I, too, “lost my life” at 42! The prime…and I was thinking “40 isn’t so bad!:)” Then, an auto accident happened. My doc told me from the beginning “you did it all wrong”. You need to break something – have something you can show, otherwise, few will be willing to give up their time to help. Twelve years later… how true. I love being around people, but isolation keeps me at home, and others are SURE they would be bothering me if they visited (no matter how much I say to come). My husband get’ it – about 95% of the time. Only one friend really gets it – the emotional aspect of pain, what it does to your being, and having no one to really call on to help, unless you are willing to pay. I had two teens, who didn’t understand. They are grown, and my grandchildren are a joy. When each one is old enough, I gets some cars, and explain what happened to “Nana”. They have compassion, but I still feel guilty. One thing about Chronic Pain/Illness, is the WRONG person feels guilty. No one should feel guilty, it happens. Compassion and friendship is the best medicine, but it the first to disappear. Sad. I feel so bad for those who have posted in your situations. I don’t have much to offer, except to research all you can about your issue, and check out every avenue for help. Homemaking classes at High Schools have girls that might be happy to assist you….and don’t require alot of money. Keep doctor shopping until you find one who is supportive and believes you. You do have patient rights, and treatment for your illness/pain. Keep on surviving!
What a wonderful work of art this letter is. I am what doctors refer to as a train wreck, and deal with multiple types of chronic pain. I get particularly frustrated when someone says I’m milking or faking the pain because I was able to go shopping yesterday, and in bed today. I could never have understood it until I was here myself, but this letter could go a long way toward helping others understand and deal better with those that suffer.
Great Book for understanding the pain matrix – Highly recommended – Explain Pain – David Butler – NOI group is leading this wave of understanding pain. I wish you all the best as I’m a 36 yo x- athlete dealing with chronic pain and the social aspect has been the hardest part for me to deal with. I am currently a Chiropractic student and in a way I am grateful for my condition as it will help me understand what my patients are going through in all aspects of life. The right people are out there to help you it just may take some research and time. So don’t give up hope!
Take Care and I thank the Author of this letter as it doesn’t relate exactly to my condition but it certainly hit home
I have lived the last 19 yrs. in chronic pain from Fibromyalgia.. Yes, it is a REAL syndrome. My brain says ouch all this hurts..my body responds to my brains signals..My eyes reveal pain.. My face says I hurt, my heart breaks because I want to do the things I used to do before my brain got short circuited.. My family, friends, doctors, nurses, all think I’m a little coco..I do too at times..I have learnded to live with this pain, Yes it’s true you do eventualy learn to live with it..Pain just becomes part of you..You find yourself one day not even realizing you are in pain..No drugs help with Fibro, pain meds. don’t do a thing..So why waste my money they don’t help anyway.. This letter was so well written I think that everyone that lives in chronic pain should send this to all their family ,friends, doctors, nurses,anyone that they have constant contact with from this pain thing.. Bravo to the author..Stay the course all you people that live with pain..We all have to stick together and encourage each other..Thanks again for putting this letter online so we all can relate and send it on to those who need to understans “us” a little better.
Thank you for this letter it explains to people about being in pain,it is true you learn to live with it.Ihave Dystonia which is a chemical imbalance in the brain,it causes my neck to go into spasms like severe cramp,i was given clonozopan as a muscle relaxent but they did not work so i came of them because i did not want to get reliant on them.It is true you want to do things but your body says no.It is very hard sometimes when you are in pain.You just have to take one day at a time,and do what you feel up to.May god bless all of you who are in pain,we may find relief some day.
Hi each and every one of you. Susan B, thank you for the comment, I think it was intended for me. I want to pray for each one of you tonight, that God be with you and let you have less pain to none. Father, please help us to remember we can rely on you no matter what, good or bad. Help us to cope and give us peace and hope, when noone else can. We love you and can’t wait to be with you. We all know that living is hard, but when you’re in constant pain, people don’t seem to understand. Please Father, don’t let another person ask, ‘how are you’ or ‘you look better’. These are words that cut like a knife. I pray that YOU Father show us the way to better understanding our disease. Bless each of you and may you rest well knowing that JESUS will be coming for us, and we won’t suffer anymore. Love, Sylvia
I don’t know why the time says 4 something in the morning, when it’s actually is 9:30 pm.
Well I guess thats where the saying comes from, time flies, or flys? Bless you again.
Your friend always, Sylvia
hi,
I feel a great load off my shoulder and cannot wait to print your
story to people who dont understand.I loved it when you
described your pain as one minute you will be fine and
then the next back to pain and how people just dont understand
especially if you have one good day.Alot of people have judged
me and think that im am faking my pain and i dont want the
worst for them but i wish they wouldnt judge especially
when i was the hardest worker at my job.I have to
overcome alot of hurdles and arguements from this pain
and this is what i dont need,the pain is already the
biggest hurdle of my life and i dont need what else
comes with it.THANKYOU may god bless you!
This needs to be given to every doctor, nurse, health worker and medical student. Especially in light of the fact that the medical community is taking away pain meds for veterans who do not have cancer but ONLY have chronic pain.
the worst of it is having an invisible pain issue. Everyone even your doctors believe you are either drug seeking or faking. Family and friends think that if you just pull yourself up things would be better. After all it’s just pain……I believe in the coming months suicides among chronic pain patients will soar as our medications are taken away for our own good. I hope any veterans out there will write their stories so there will be a record of our governments war on veterans in chronic pain.
I so wish everyone could have a copy of this when they make comments like Oh, you must be okay now. or You don’t look sick. If they only knew.
I read this, sent it to my boyfriend and posted it on Facebook. I have re-read it 4x this morning and find myself in tears each time as it explains that I try my best and small gestures mean so much. Thank you so much for posting it :-))
Thank you for writing this letter. Having chronic pain is not a choice. I am fortunate that I do have days where my pain level is low, I feel pretty good, do to much, then I pay for that dearly. My pain comes on fast, makes me feel horrible, can’t find a position that helps it. It keeps me up all night, then I feel panic, when it hurts so much to even breath. My only solace is, I know the severe pain will pass. I have a wonderful pain management doctor, who himself has and understands chronic pain. So, please don’t judge something you don’t understand. Don’t tell me to try to just take an advil. I am not a drug seeker, I take my medications exactly as prescribed. I don’t feel euphoria from my medications, they don’t take all the pain away, they only enable me to care a little less about the pain I am in. To all of you that understand….thank you! bless you.
THANK YOU!!!! THANK YOU SO MUCH !!!
OK, Mr Author Unknown, get out of my head!
But seriously, it is like I wrote that piece myself (provided that I was that articulated).
Thanks for sharing this. Let’s re-share the heck out of it so more people can have a glimpse at what it is to live in constant pain.
I have had a problem with my spine from the time I was 17yrs old.I have had 4 surgerys frist at age 26.I had lost all use of my bladder.the second time the doctors let me deal with another busted disc for a yr.That just left me with nerve damage in my legs.the third was a fusion so I wouldn’t lose the use of my legs.the forth was a fusion in my neck.My pain has been most of my life.I have been called a fake along with other things.I have spent months in bed because I couldn’t sit or stand.I tried to work jobs just made things worse.My whole spine is messed up yrs ago you could get pain meds.It helped but pain never is gone.Now all pain doc want to do is shots in your spine that don’t work a little pain med.Even right now writing this makes my arms and neck hurt.I can’t clean my home right anymore,I can’t do most of the things I use to do I have depression problems now I feel unwanted,unloved,just useless. By the way I am 54 now.Even when I walked funny or couldn’t stand up.you would think people would get it. but no if the can’t see it it’s not there.I am just tired now there is no real help out there any more.some people are just mean and judge.
I’m out of ideas, cry all the time, only time I’m out of pain is when I sleep, I’m grateful for that. Stopped drinking 33 years ago now I need pain pills to survive. I’m told it will take a year for me to be out of pain since my back has been rebuilt and I’m just going into the fifth month of recovery. Any thoughts, ideas, suggestions. I related to the private times, it seems it hurts more, I live alone, am lonely however there is home health care. My depression kicked in about a month ago, where does it stop.
Reach out to others, hope I help, enough out of me.
Wish I could help you. I have similar issues – constant pain for 30 years from old injury, spinal stenosis. Myself I’ve tried physical therapy, steroid injections, surgery, chiropractor, narcotics, spinal cord stimulator (unbelievably painful when they place the leads!) and more. Still searching for something that really works long term. I don’t really have any good solutions but wanted u to know u r not alone.
I live alone too!!! Definite tough in winter. Happy lamp helps me. Bought XL size ;-). Exercise helps. Warm pool. Ketamine 4 day infusion was my life saver to make the rest more tolerable.
Hi Charlie,
Just know you’re not alone. No one told me how long it would take to heal after my fusions. 4-2010 I had a lumbar L4-5,5-6 fracture, spondylolisthesis, lamimectomy, which left me with permanent nerve damage on my right side. 3-2011, 11 mths. later I had an ACDF fusion with myelopathy at C3-4, 4-5. Thank God it arrested the myelopathy progression or it would be much worse. I have lumbar and cervical stenosis, degenerative disc disease, etc. It takes a long time to see improvement in my opinion. Be gentle with yourself. These things helped and still do with me: walking, heating pads to promote blood circulation (I used ice initially), I have two good pillows I have on my Lazy Boy chair to keep my spine straight. Slow stretching, yoga and Pilates help after your dr. clears you. This is not medical advice. This works for me. I started walking on the treadmill for 5 min. I now can walk 2 miles! There is hope. It’s slow and steady progress. I too don’t have pain when sleeping. Such a blessing. I’m fortunate to have a wonderful husband who takes good care of me. My 4 children are not supportive, and have strong opinions on me using pain meds. I’m going to send them the wonderful letter on this site. My daughter who gives me the worst grief, never visited me in the hospital for either surgery and never heard the neurosurgeon say I’d always have pain.
I’m glad you have home health care! Having a pet can help. Our dog could be a therapy dog. He always knows when I’m hurting and lays at my feet. Plus they don’t give you opinions you don’t need. I feel alone with my family. They don’t care, visit, nothing except off unwanted advice I’ll kill myself on pain meds. Wish I never told her anything. It’s better to have a few supportive people in your life than a group of mean opiniated people. Slow and steady progress. I kept a journal and wrote what I did, how I felt, etc. and wrote my pain level. Advice from a friend who had 4 spine fusions. She told me in a year look back at them and you’ll see some progress. I hope you get feeling better soon. You’re not alone. We all deal with pain every day.
Peace!
Karen
I can relate to your sharing. I had a spinal fusion on my L4, L5 and S1 when I was 21. I am fortunate that it stabilised a 4th grade spondololesthesis. The structural disorder of the spine has secondary complications though and it’s ongoing management. For a long time I had no support and found it difficult to keep going. Fortunately 10 years ago I became friends with someone who has supported me into areas which are improving my quality of life. I have been having Osegai Osteopathic treatment and taking lessons in The Alexander Technique which are making a big difference in my life. I am now able to go to the gym and strengthen my body. It’s been a long journey and no quick fixes. I hope for you to find some relief with yours. I know how tough it is. Bless You
I came across this page through google. I was said to myself oh my word this is exactly what I have been trying to tell others. This letter says it all. Thank you so much for this letter. I suffer from RSD-reflex sympathetic dystrophy and its a blessing to know that someoene out there has the words that I have been trying to make others understand for so long. Thanks again. I am staying positive never giving up keeping the faith and smiling even if I am dieing in pain.
I wish I had this letter years ago when my pain first started. I am lucky in that I know exactly what causes my pain and how those areas were injured. I’ve lived with pain since I was 12 (I am almost 42) and it has gotten worse over time to where I am now, in extreme pain all day long. Thank you for posting this letter, most of the ppl in my life now get this very well, but this letter will be helpful to many other people.
This is it! It breaks my heart seeing how many people feel this is coming from their heart too. I hope you all have a small pain day with a clear head, holidays are hard when your feeling miserable. Xx
Thanks for this letter….its everything I want to say but can never find the words. I have LPHS, which is a rare and very painful kidney condition that some doctors don’t even recognize. I have shared this with my family, friends, and others I know suffering from chronic pain. We are all grateful for your letter…..
Hallo Melanie,
Ook ik heb LPHS, ik ben erg benieuwd hoe en door wie je behandeld wordt. In welk land woon je? Gebruik je pijn medicatie? Zo, ja welke?
Ik ben een nederlandse vrouw, 55 jr, heb 8 jaar LPHS en heb net een drastische verhoging van medicijnen gehad omdat de pijn weer toenam. Sinds 2 weken ben ik volledig arbeidsongeschikt en kan mijn werk, als leerkracht in het speciaal basisonderwijs, helaas niet meer doen. Omdat de verhoging van de medicijnen de pijn nog niet voldoende heeft gereduceerd, ben ik benieuwd of bij jou misschien andere behandelmethoden zijn genoemd/toegepast. Mijn omgeving is gelukkig heel begripvol en behulpzaam en mijn behandelaars nemen mij allemaal serieus. Ik hoor graag van je, groet Berna
Thank you so very much for this letter. I will be using it! I wish I would have had it at the very beginning, it would have made my life a little easier!
Thank you for this letter! As a person with Chronic Pain I live this every day at 34 years of age. This sprung tears to my eyes and made my heart ache to be “normal,” but I know I will never be. I deal with a lot of people who sit there and say “you’re too young to hurt all the time” or “you look healthy enough to me.” It makes me sick how people will judge you on looks alone and never care to ask how you are feeling inside. I pray for all of us that deal with this and I hope that one day they will find a cure.
Sincerely,
Mishael
Yes, as everyone else says, thank you, this describes daily “Life” very well for both my wife and I. She suffers five levels, I four, degenerate disk dis-ease; lumbar and variances range from a “great” 6 to off the chart, way over “10” on the pain scale hour by hour.
People who don’t have a clue want to “talk about it” and those that don’t think “you’re a faker”, and that’s just the tip of the iceberg. We hate the meds, can’t do several of the “options” of treatments and have already been through everything at least once if not several times, it’s not for lack of trying.
Thank you “Anonymous”, you have summed it up well, very well indeed.
Blessings of Peace,
Al & Kay
Thanks for taking so much time to put all of these thoughts and feelings together.
They truly describe all of the things that chronic pain brings. I have suffered from
chronic back, neck, and shoulder pain for twenty years. Talking to most doctors is
a waste of time. They treat long term chronic pain sufferers the same as they would
a person newly injured. In doing so they offer nothing. Beware of doctors that are just
out to make money off you.
I feely deeply for anyone that suffers from chronic pain and works or tries to work
a full time job like I do. The guilt I feel about having to lie and do less than I want
to do because I am not physically able eats at me. I am currently on med leave and have
no idea when or if I can return to work. Enough about me. I wish you all the best of luck
in your battle. Try as I do to find meaningful things to live for.
Hayden
thank you so much for this letter. It means the world to me. This is my like ever day.And know one knows what we go through every day.One minute your fine then you want take someone head off cause they dont understand.I’VE lived with Chronic pain now for 14 yrs .IT NEVERS GO ALWAYS….Sometimes i dont know if IM coming or going. I stay depressed ,cry,hurt,unnessary,useless,and I know i hurt people feelings dont mean to. When I read this this letter it made me cry .i just wish everyone could read this.It would make other people stop and think how grateful they really are to be normal and lead normal life.. Unlike us with Chronic pain and other things going onwith our bodys.tks so much ..I really needed to hear from all you..I spinal problems and nerve damage never know when my legs are going out from under me. no sign of falling down .AND I CAN BE STANDING AND NUMB FROM HIPS DOWN.. Once again tks for this….
I understand what you’re going through. I wish my family members and friends were more understanding too. I have degenerative disk disease and anemia. Some days are ok. Other days I struggle to just to get out of bed or walk due to the back pain and muscle stiffness, and I tend to get tired easily. Even on a good day, I can’t stand for a very long time in one position without triggering back pain. Some of my family members don’t understand at all. They think that I should have the same endurance that they do….eg lift heavy things, paint walls for hours. On top of everything they get really angry and annoyed when I don’t. It doesn’t matter that I have medical proof.
Since I look ‘fine’ and physically I look ‘strong’ because I have a large build, they just assume that I am. It’s so frustrating. It makes me feel very alone.
Thank you for your letter.
That letter pretty much says it all. It brought tears to my eyes, but definitely brought me to my knees in prayer!
Thank You Anonymous!! I am going to personalize this, then give it to my husband and totally misunderstanding and non-empathetic Mom, who, (even after breaking my low back at 19, cervical discectomy with fusion of c3-c4-c5 at 33, and numerous other car accidents that did a lot of damage), thinks I am a hypochondriac.
I saw a NUCCA trained specialist last week to repair my cervical issues. I am at stage four (highest stage) of spinal deterioration, and hopefully he can help me, since no one else has really been able to. I have had countless abuses done to my body in the name of science, that didn’t deliver what they try to promise. If any of you are familiar with NUCCA, please contact me. I am slightly skeptical, only because I have tried so many things.
Best wishes to all,
Chris
This letter says it all! Thank You! I’m sitting here alone typeing at an angle to stop the numbness. Having a cervical epidural tomorrow (can’t wait) I have a wonderful Doctor. So many people, including family members think that you are faking pain, let them walk “just a day” in my shoes and they would demand to take them off. I wish everyone with this pain peace and hopefully, less pain.
My low back pain started freshmen year of highschool and do to circumstances I have only recently, at 27, have been able to get MRIs which showed osteoarthritis and ddd of my spine. After years of doctors telling me I was to young for the pain I finally have proof it’s not in my head. 13 years of untreated chronic pain has put me in many bad situations and I can relate to everything you wrote.
Thankyou for this letter, everything written was my life, it made me cry x
thanks. it is my problem too. i can relate.
nobody really understands. when i have no pain ppl tell me u look good, happy .. sometimes they ask me how are you? u look better. and when i say not really, i can see in their face that they dont want to hear that. so why at the first place u ask !! 🙁 i have been so emotional every time i feel pain ..
i never complain, now even my family dont think i have any pain. often i forget my pain and listen to them and their issues. so often at the end of the conversation, we leave by me praying for them .. then all of a sudden i see myself left alone in pain and darkness. and it hurts a lot.
I almost cried when I read this:
“1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.”
this is me. I imagine it’s the main reason that I only have one long time friend and am in danger of losing more people in my life right now. I’m great at making friends, bad at keeping them because I tend to let people down. Even though I explain to them (if I know them well enough) they don’t *really( get it. or else I just turn down invitations which has the same effect, essentially.
oh.. by the way.. those avatars are HORRIBLE. (I assume I’ll have one beside my name, too.) 😀
I can totally relate. I used to avoid making plans for fear of breaking them, because a flareup can happen without warning. And getting stressed about letting others down just exacerbates things. So my husband and I have worked on a new approach. We keep certain plans but warn people early on that things may change, and an exciting weekend of adventures may turn into a stay-home-and-play-cards kind of weekend. Or I just suggest that they carry on with activities and not take it to heart if I stay home 🙂 Once we explain things and put them out in the open, it’s surprising how adaptable and understanding people can be, and now making plans isn’t stressful so the chances of getting a flareup are reduced because I’m worrying less.
Thank you so much- both to the writer and all of the respondents. I’m 30 and suffering chronic pain for about 2 years now. My mother had endometriosis and I was always very hard on her- I’m not sure I can even say I “get it” now. However, reading this has helped to put some things in perspective for me- I can’t make them believe and maybe my husband will never get it & keep accusing me of faking it or suggesting I stop the pain meds. I have hormone related headaches (not really recognized by docs 🙁 ) and quitting the meds doesn’t make much difference- however taking them allows me- as another said- just to stop thinking about the pain and get by. I don’t know, but I really don’t want to know what it’s like for you all who have had 20+ years of pain!! Lol- but I really will try harder to understand- especially for my moms sake 🙂
Thanks & good luck to you all!!!!
<3 amber
I have suffered with pain for 5 years straight now and I could have written this because it describes me exactly ( my pain won’t let me articulate as well as the unknown author has). My spine has 7 discs that are either ruptured or completely obliterated. 9 procedures later including a fusion and the pain is so great I have thought of suicide. Often. I am on a cocktail of meds and without those I know it would be the end for me. There is no “high” or “euphoria” when I take my meds, just a refuge for a brief moment from the clutches of the most sinister pain imagineable. I am in my 30s and need a cane to walk. My feet go numb and I have fallen numerous times. I am embarassed for mychildren and husband having to be seen in public with me. For all those with chronic pain, I get it, I really really do and I wish all of you the very best.. as we continue to strive for our collective cure from unending pain.
This is such a beautiful letter. It makes me speechless … But most of the people don’t really want to understand even if they read such a letter.
My Gfs talk about their colleague who says she has cancer, but they think she doesnt have, because she is very fit and she has beautiful hair, and they think she just wants to have more time off and that is why she tells everyone that she has cancer. When I listen to my friends and their discussion, i just think people are amazing!, and that is why they might have ignored every single time that suddenly i raised something about my situation. Once my friend told me – as a joke – maybe you like to keep seeing your doctor!! She said it as a joke, but it means she can think of such a unbelievable reasoning ! That is a pity that people can be so pathetic …. I only wish they experience constant on/off pain .. Because of these, i often get so confused. I then think whether my pain is real or fake? ! and it s a bad feeling. So what is real? bleeding is real? dying is real? a lot of my pain is because of people’s reactions .. I feel doubtful about anything and about my feeling and my pain too.. Only if I could remove all the connections and interactions.
At age 52 and losing my job after 6 weeks because I missed 2 days of work and the first two weeks my productivity was low and work was sloppy. But, the amount of work and quality of work I can easily do in a 1/2 day is 70% greater than the work I can do in two days when in severe pain.
I lost another job and all I have is my van and a few thousand dollars. This time I was smart. I knew there was a 50% chance I’d be discharged, but $3000 will not last very long.
I just got health insurance and it’s $300/month. Last year I had no insurance and no money to see a Doctor. I spends everyday looking for another job and pain can undermine a job interview.
I lost everything, my family, my house, my credit, my integrity and it’s amazing how people will express contempt for those who miss work, arrive late or leave early.
The anxiety is a consequence of the chronic pain and the failures. And it’s the fear of being homeless again. I went from a $85,000/year job, new 2000 sq. foot house, a new car, a wife and son. I also had a 750 credit score.
The credit collectors call and WOW it’s 10:30 PM and my phone is ringing. I do not answer knowing it’s a bill collector. Oh, if I could I would set up a payment plan. But I just did this and now after one token payment I cannot
There is no place in America for me to turn to. I already lived at the Salvation Army for 3 months. My family will not allow me to live with them. My partner is unemployed and not very motivated. I wish she understood I mean no harm when I tell her we should end it. I cannot provide for her and she needs to go live with her parents.
Again the humiliation of being discharged and not again; I tired to get a disability settlement after being discharged from my last job, but was denied. Wow, even well I missed work my productivity exceeded my peers. Probably because I am an overachiever. I didn’t follow the status-quo
I have few friends and they are struggling to make ends meet. I cannot place any burden on their lives. Plus, I still cannot cope with rejection after dealing with it for years.
If my pain was manageable I would have achieved the goals I have set. Goals and promises broken. Broken promises are seen as lies and today, I have no physician who treats pain.
Do I use my health insurance and find a physician before I have to leave this best city known to have the best doctors in America or on my way to another unknown do I beg for help.
Life is not worth living when nothing I can do will reduce the pain, but I am do not have the ability nor the selfishness to end mine.
I am overwhelmed by the truths stated here and by all of you. Why why why are there so many of us with undiagnosed chronic pain?
24/7 jeadache since oct 2010. I have a mask i wear and it
Does me no good. My marriage is crumbled and we fight everyday.
Tired of trying. Bitter just bec im alive. The pain has taken all thats good from me
Each breath is another second of paon amd enduring the mental anguish it has caused.
I dont wanna die i wanna stop hurting however i dont believe ill achieve one with
Out the other.
Oh, god I hope you are still here and have found a better quality of life. I feel so much like you and I am scared reading your post which was posted some years ago. I don’t see how I can ever achieve relief in this life.
This letter decribes my life and how I am treated by some people. I realize its hard for people who don’t suffer from chronic pain to understand or even sympathize because they don’t know how it feels. We can say it, but they still don’t get it. Its ongoing and it must be hard for them as well to “deal” with us. I know I am a handful now and can’t do the things I used to. I can’t work, I really don’t want to do much of anything most days. I don’t know if I would want to deal with that if the shoe was on the other foot. It is endless. My life is doctor’s and meds and mood swings. Its awful.
This pain is the worst imaginable :/
It says so much that I never could. Comforting to hear of others going through the same things I am. Emailed this letter to family, only one replied back. Charming. They clearly don’t want to know, and yet get confused by my ‘odd’ behaviour. Reading this letter would do so much to understanding me!!! Have learnt to accept that people won’t ‘get it’, no matter how much I try to explain to them. Doctors are the worst with their attitude, and the only thing they have managed to do is make me worse. My thoughts are with you all going through the same things as me. We are your family who identify with and support you.
Gentle hugs
Thankyou for writing and posting this letter, its wonderful. So many times you have to try to explain over and over and then it feels like people think ‘oh its always all about you!’ and its so hard to get the message through. That’s exactly what I’m going through now although I have lived with Chronic Pain for 4 years, I’m only just starting to get out and do small things like walk to the shop. I know you know full well about Chronic Pain and I hope your managing your pain and living a happier life! Sending love and light to you :)))
I am also tired of that statement too. “It is always all about you”. If they were in constant pain every day, wouldn’t they constantly be focused on the pain too? Of course they would. My wife left me because of what this horrible condition did to me. She called me a liar and a hypochondriac.
I am heart broken to hear your post. It has been 5 years of serious pain for me and I am having a very hard time. I want more than anything to be well, but after 5 years I feel like my only relief will come when I move into the next form of life.
I wish you the best. I want to hear someone say they found a way out of this pain.
So glad to find this today as I have suffered for so many years. Today I feel I just cant take it anymore I am dying inside this letter has helped me know there are those just like me who really do know what I am talking about. I just want to give in today I cant think my body is relentless . This letter you post has truly helped me and I just wish I could send it to everyone who is in my life but not sure if they care and I can only hope this may help them to maybe understand jus a little. Pray for me today as I am weak, exhausted and just cant stand it yet I know I will.
I think I’m going to link to this on Facebook. Excellent!!!! I was just diagnosed with lupus (amongst other things) after living with chronic pain without let-up since I was 12. I am now 55. I wish I could stop being shocked at how most people do not have any true empathy. Great post!!! Also, thank you for changing the website. It looks great now, and I can READ IT! Finally!! It took me days to re-find it, btw, ’cause I didn’t bookmark it and I was shocked to see this huge change. Shocked and grateful.
You sound exactly like what my mother is experiencing. And all the things that you say not to say, I have said to my mom..such as trying to push herself. She also says that nothing will ever help. But with all the research that I have done one thing seems to have worked for people, and that is exercise. Of course I understand that when you are in pain the last thing you want to do is exercise. But the ones who overcame this, did exercise and all said that it was misery at first, but then little by little it started to get better. I also know that this comes from the brain. Our brain has incredible powers. One doctor described chronic pain as the brain having a memory. Sometimes the brain can make pain more intense, it can make pain be where there shouldn’t be any, perfect example is with amputated limbs. The brain forgets, or doesn’t realize there is no more need for pain in that area. So in a way, I think that there might be a way to “trick” the brain into thinking that the pain can go now, or that it shouldn’t be there anymore. It’s a matter of tapping into that. I wonder if anyone has tried hypnosis… But if someone wakes up everyday and says or thinks that the pain will never go away, then maybe that just adds to the brains ability to keep the pain there. Maybe trying to wake up and say “My pain will soon go away”.. My frustration with my mom is that she won’t even try little things such as that, or even deep breathing. She is convinced she will be like this forever.
You are exactly the problem this letter talks about. You have absolutely NO IDEA what you are tlaking about. I feel for your mother who has to deal with your ignorance.
Exactly. I used to be an avid runner, jogging 3 miles a day 5 days a week. I would spend hours at the YMCA running the treadmill, weight lifting, rowing and swimming. I tried pushing through the pain. I have a stair stepper, weights, weighted hoola hoop, leg weights, etc. Trying to force the stair stepper exacerbated the swelling in my foot from Plantar fasciitis. I tried to push on through Zumba, injuring my heal further. It now won’t heal up and I have to wear good arch support and tennis shoes in dresses to work and church.
My neck and back pain due to degeneration and a chronic injury from an auto accident over 20 years ago has flared up. The hula hoop is fine…IF I don’t move my neck around. Lifting weights exacerbated the pain running down my right arm caused by my neck injury. And I sit here working a keyboard and mouse all day with ice packs laying on my arm and neck making the situation even worse. Working on posture and having a good chair is not helping. Prescription pain meds have no effect. Prescription anti-inflammatories have no effect. I go through bottles of bio-freeze and use a TENS Unit constantly. I wrap my arm in a heating pad just to sleep each night, with an ice pack under my neck and a neck pillow. This is not something they can treat so much as something they work with pain management on.
I had approximately 3 hours of sleep last night. I cannot sleep on my right side or my arm throbs terribly. I cannot sleep on my back due to the lower back injury sustained when someone’s selfishness in trying to beat traffic seeing me stopped ahead, caused my dead stop car to be rear-ended by a 60 mph car hydroplaning when he realized he couldn’t stop and tried to break just to find the breaks wouldn’t stop him on the wet road. Years later I’m dealing with the fallout from it and never recouped my losses even then. Being relegated to sleeping in one position only is a pain in and of itself. And to add insult to injury, people who have no clue what it is like to fight depression because you cannot get enough sleep, to fight irritability because of lack of sleep and teeth gritting through daily pain, to drag yourself through another day of it just to listen to their advice on something they haven’t ever dealt with…
Walk a mile in another’s shoes (or remove the beam from your own eye), before offering advice to remove the speck from mine.
Then just crawl up in a ball and live with your pain. DON’T BE MAD AT PEOPLE WHO CARE AND WANT TO HELP!
Wow! that is rough, PB. If there were people who care, they would look up ways to be supportive without being demeaning. So may people have taken their lives because of people like you. Pain is unbearable and impossible to explain. But the days that pass wear on a person and turns them into someone they never were before.
sunnygirl, I bet deep breathing would help oxygenate your
brain and cure you of your chronic stupidity. But I’m deeply mistaken.
By not educating yourself and by refusing to learn empathy,
you cause us pain survivors much frustration, you seem to not even care that you are moronically ignorant.
Regards & KMA
Rick: Trying to help people IS showing empathy…oh no, I should just leave my mom in the corner suffering and just close the door behind me. Don’t talk to me about stupidity. There is a whole other side here. I do feel for people in pain, but have you ever heard of how pain becomes a friend? My mom won’t ever come over to visit because she has so much pain, but tell me, why does she manage to go get her hair done? I hear things like this all the time, and I do know that our brains control most of what our bodies feel. Why is it that a lot of people’s pain disappear if they develop Alzheimer’s??? It’s as if the body forgot that there ever was pain. I’m not saying it’s in their heads, not at all. But the brain has a memory…I’m also not saying that it’s easy to do. But aside from that, I listen to my mom lament about how she is missing my daughters childhood, and I really do feel horrible about that, yet she won’t even TRY to do the TINIEST things that MIGHT help her. So maybe we should all be cold hearted and leave all those in pain to suffer alone, would that be better? Isn’t it bad enough that we feel bad for our family members who are in pain, but now we have to feel guilty for wanting to help?
Oh dear PB,
I am sorry to read your post. I think you may have pain in your heart.
I have a muscle disease and now cancer and a whole lot of pain that I can not “think it away”. I have heard that ketamine would be like Alzheimer. I was put into the hospital for 10 days and put on Ketamine. It did not erase my pain. I only had pain in my hallucinations.
My grandmother had severe Alzheimer and she was in terrible pain to the point of biting the bed railing and breaking her teeth while crying out in pain. Until you have severe chronic pain, you should go easy here before you cause someone to end their life. Please
I suffer with chronic pain and have done for some years now. Could no longer work as a PT which I really enjoyed so I learned website design.
The pain makes me feel so depressed and sometimes angry while some of the painkillers make me feel buzzing which I don’t like all the time.
Sometimes I feel so low that I cannot do all the normal things like even jog.
The one thing that I used this condition to make the best of was I read books all day long and make websites online so my mind is kept active so at least I get some enjoyment but sometimes on painkillers you wish to come down and not feel it but the pain is so bad. Recently the pain got much much worse and it was such that I actually wanted to be rid of it was that bad. I am very bad company at these times.
My specialist put me a much better med recently and it really makes life much better for me and I can move about more as the only exercise I get is long walks by the sea. I may even be able to run soon but the pain is more under control. I wouldn’t wish this on my worst enemy the depths of despair at how I feel at times when all I can do is lie down for days on end.
But it is more under control now.
This. Is. Me. Thank you for such a well written response to anyone who does not live with chronic pain.. thank you.
Thank you for posting this. Hugs.
Thank you for this wonderful letter. Like everyone who has left a comment, it sums up my thoughts & feelings. The past 6 months have been hell….. I feel like no one believes me. I want my life back and be pain free. Big hugs and love to all of you who have left a comment. The tears I shed whilst reading this are for you too. I pray that we find relief very soon. Take care xxx
Thank you so much for putting into words exactly what my life has been like since 1990 and will continue to be like for good. It is so helpful to be able to share your words rather than having to explain things all the time, usually insufficiently, to numerous people which in itself adds to the pain. Thank you.
I WAS DIAGNOSED WITH RHEUMATOID ARTHRITIS 12 YRS AGO. FOR 9 OF THOSE YEARS I WAS ABLE TO MANAGE PAIN WITH OCM. HOWEVER THE LAST 3 YEARS I HAVE BEEN IN CONSTANT CHRONIC PAIN. JUST THIS MORNING I RECEIVED A TEXT FROM MY SON THAT SAID ” MOM U NEED TO QUIT MILKING THIS AND GET BACKBTO WORK AND HANDLE YOUR RESPONSIBILITIES . THIS COMING FROM SOMEONE WHO NEVER WENT WITHOUT ANYTHING . THOUSANDS OF $ FOR HIS SPORTS, CLOTHES, CAR. ETC. I WORKED MY BUTT OFF , SOMETIMES WORKING 15-16 HR DAYS FOR 3 MONTHS STRAIT. I SAT IN MY BATHROOM AND BAWLED MY EYES OUT.
NOW IM AT A POINT IN MY LIFE WHERE I NEED HELP AND IM ALONE TO DEAL WITH ALL THIS BY MYSELF.
AFTER READING THIS LETTER IT IS EXACTLY MY LIFE. I AM GOING TO PRINT THIS OFF AND GIVE IT TO MY SON.. AND HOPE HE GETS IT.
I LOVE HIM , BUT AM EXTREMELY HURT BY HIS WORDS.
THANK YOU SO MUCH FOR GIVING ME A VOICE AT THIS POINT IN MY LIFE.
Oh, Kimberly….sending you gentle, compassionate hugs. I’m so, so sorry he said such awful things to you. I can only imagine how much your heart broke… 🙁
Perhaps he needs a FIRM REMINDER of just.how hard you worked your a** off for his benefit….lazy people who fake illness and pain don’t tend to be the types to work fifteen plus hours a day to make sure others are well provided for. Your history of hard work should count as evidence of your true nature….pain steals this frp
Sorry posting from phone and wasn’t finished …continued….
…pain steals this from us.
He needs a not so gentle reminder to feel gratitude for all you worked so hard to give him, and to stop being such a selfish snot that he’d judge you so wrongly.
Wishing you peace and relief from this darkness called chronic pain….and also praying your son realizes his error, feels (rightfully!) mortified for being so cruel and ignorant, and apologizes verbally as well as with ongoing acts of kindness ….like the many selfless acts you performed.
Don’t know after all these years you will see this, but it breaks my heart. I am with you. I have a muscle disease and now found out I have cancer. I have been in terrible pain for 5 years and can’t take much more. I don’t think our children can understand because they want us to be well. I don’t want my daughter to suffer with me, but I do wish she could understand and spend a moment of time with me in her busy life.
I have recently been diagnosed with Interstitial Cystitis and have felt nothing but loneliness and I haven’t had anyway to describe it. The letter above brought me to tears. Because, now I know that though it may not be the same illness but it is a universal network or feelings and I am not alone. Thank you, this note got me through another day.
I have struggled to put into words what you have so greatly accomplished. My many thanks and appreciation. Tears have wet my face this has touched me so deeply. I have new hope that those I love and care for will read your words and have some understanding of something that even I don’t always understand. I will also share with others that i know who are in the same place. Peace be with you.
I have suffered chronic pain since i was 10 years old. I am now 21 and am just beginning to accept that there is no cure. I have a long way to go but I know I will get there. This letter is one of the best things that has helped me realise it’s okay and that I’m not alone in terms of my frustration and tears at no longer being able to go out for drinks with the girls or even do a load of washing. The guilt of knowing that has made me so guarded not to let anyone in or have a family of my own because it simply isn’t fair.
This letter might just be my saving grace to allow myself happiness to know there are mothers and fathers out there with chronic pain that are getting through life.
Thank you. This has helped more than any specialist and professor ever could.
Your words ring so true. I can completely empathise with you. I also have lived in constant Chronic pain for 10 years now. Doctors know what has caused it but currently there is no cure, where I live a life on strong mix of morphine drugs. Being in chronic pain can be a lonely and isolating experience, it’s complex, you feel a constant burden on other people, you get frustrated when new techniques/possible cures get suggested. It effects every part of your life. It’s nice to have found your post, reading it, it makes you think there are other people out there, who know how you feel, it’s comforting in a way.
Unfortunately chronic pain is still not fully understood in the medical world, I have been lucky (I’m also a healthcare professional as well as a chronic pain sufferer) but it helps dramatically if you have good support.
I wish you all the best, and you will never be alone in how you feel. I certainly know what you mean!
I have seen this letter around the web on the various chronic pain sites and where as it doesn’t really help me cope it does bring comfort to know that we are not alone in our suffering. Don’t get me wrong I don’t wish this on anyone not even those medical practitioners that are afraid to prescribe meds or even those that fall in to stigmatizing us as malingerers, I am just glad some one put down in writing what alot of us could not, and explained it in a way that people who do not suffer as we do can understand. Most of the sites I have been to deal with spinal pain, but some of them deal with other pain. I myself am at a loss for what it is with me, I suffer from debilitating chronic pain in both of my shoulders, elbows, wrists and hands. I have only been suffering like this for three and a half years, but it feels like a life time, and people seem to forget I am in constant pain because I do what ever I can to function at a slightly less that normal capacity. They don’t understand I am not the same person with the same capabilities that I once had. They can’t see anything wrong with me and don’t realize how much my life has had to change because of what I am no longer able to do. I had my license taken away medically because I am a liability now when I drive, and that is only one inconvenience. My daughter doesn’t understand why daddy can’t play because she sees nothing wrong. The letter was a way to let people know the frustration we feel while trying to explain it from our point of view. It was awesome and inspiring. I once tried to talk with my dad about what I was going through, and he dismissed and changed the topic because he didn’t understand. So I told him the best analogy I have seen on the web anywhere which was not noted above…. when you try to explain what you are feeling ask them is they ever cut their finger. Most people will say yes, so then ask them about how much it hurt, they will say that it stung or that it hurt like a son of a gun, i then tell them to multiply that feeling a hundred fold. give them a second to absorb that, and then tell them that they will feel like that every moment of every hour of every day for the rest of their lives… I ask them to contemplate what it would mean to feel like that all the time with no breaks and no chance for it to ever feel better. then I realize that some understand it and some don’t or just don’t want to.
I have considered applying for a handicap decal for my vehicle so that (in my case with my arms) I don’t have to carry grocery bags so far to my car because I can’t support more than about 12 – 15 pounds, but the social stigma of people questioning me because they can’t see that I am physically disabled, was enough to turn me off that idea, but lets face it we are disabled… even if others don’t see it that way.
OMG, you sound so much like Leslie. I’m truely sorry to hear of your struggles, we would never know it. Your right, people without chronic pain don’t understand nor can we feel your pain. All we can do is try to understand, support, and be compasionate. There are so many days where we have to leave Leslie all by herself and she can’t even get out of bed. The physical and emotional pain just depletes all her energy and this brings about confusion and self worthlessness. She can’t even deal with making and going to Dr.’s appoinments daily or keeping track of all her medications. We really need support groups to help each other out. Because the rest of us non chronic pain people don’t know and go about our merry ways leaving our loved ones behind to deal with their issue all by themselves. I feel bad about that, but I don’t always know how to help.
Hi there
This is so well written. I had an accident about 2 years ago, I actually fell.
I did put a claim in (please dont anyone judge me for this)
To be honest I am glad that I did, because I was taken to hospital with whiplash type injuries and was told I would make a recovery and now 2 years on, I havent. The most frustrating thing is, my doctor is lovely, he really is. But the whole NHS is terrible, the physio hurt me more than I have ever felt by showing me exercises incorrectly.
the days off that I have taken from work because I am terrified of losing my job, but holidays is still affecting my work because no one does my job for me. But the immense relief that I dont have to go into work because I need to rest is wonderful.
I am now 39 and my daughter is 8 she was nearly 6 when it happened and to this day, I feel so guilty, especially when she says things like ‘mummy if you are OK tomorrow can we go for a walk’ I have let that little girl down so much. I do actually feel traumatised by this, especially seen as I literally was very healthy, in fact on the morning of my fall, I had been training as I was doing the 3 peaks challenge – which I didnt do.
My quality of life has been spoiled, not old age, something that wasnt my fault and feel that my life has been spoiled almost prematurely.
Its very hard, its also very weird for me to handle being told I am a chronic sufferer.
I go and see the doctor next week for a final medical, I am tempted not to go, I dont think they believe me to be honest. I just dont know what to say or to expect. I am scared, I feel very vulnerable when I am like this and I didnt see what I fell over, at all and I certainly would not have done this to myself at all. I take my hat to anyone who writes such a honest account of how they are feeling.
Thank you for sharing it. x
And thanks to all the helpful family and “friends” who laugh it off and call you a hypochondriac. If they truly understood why they just help pay some of the growing medical bills. I push through severe pain every day just trying to get through work. As a single mother it’s not as if I have a choice. And I frankly get sick and tired of hearing how I must not deal well with pain or that I’m a hypochondriac. Worse is laughter…like it’s all in your head. If it were then why is my trained doctor, who knows more about medicine than family or coworkers or friends ordering MRIs, X rays, EMGs and PT. Dontcha just love all the self proclaimed doctors?
Even worse, I continue to have faith in God and pray daily that He’ll take this pain from me. But the well meaning Christians who say you have to believe you’re already healed (which was NEVER taught in scripture) or tell you that you must not have enough faith almost make you want to pray like David.
When he shall be judged, let him be condemned: and let his prayer become sin.
8 Let his days be few; and let another take his office.
9 Let his children be fatherless, and his wife a widow.
10 Let his children be continually vagabonds, and beg: let them seek their bread also out of their desolate places.
11 Let the extortioner catch all that he hath; and let the strangers spoil his labour.
12 Let there be none to extend mercy unto him: neither let there be any to favour his fatherless children.
13 Let his posterity be cut off; and in the generation following let their name be blotted out.
14 Let the iniquity of his fathers be remembered with the Lord; and let not the sin of his mother be blotted out.
15 Let them be before the Lord continually, that he may cut off the memory of them from the earth.
16 Because that he remembered not to shew mercy, but persecuted the poor and needy man, that he might even slay the broken in heart.
17 As he loved cursing, so let it come unto him: as he delighted not in blessing, so let it be far from him.
18 As he clothed himself with cursing like as with his garment, so let it come into his bowels like water, and like oil into his bones.
19 Let it be unto him as the garment which covereth him, and for a girdle wherewith he is girded continually.
20 Let this be the reward of mine adversaries from the Lord, and of them that speak evil against my soul.
Common Christian respones to people in chronic pain: “Have you TRULY asked God for a healing? He only answers His children who are sincere with their requests.” No, I lied about wanting to be rid of debilitating chronic pain. I ENJOY being in pain 24/7, having chronic insomnia, suffering from pain-related depression and anxiety and struggling to make a living all through my 20s and 30s. lol “You must have some unconfessed sin in your life that you need to repent of.” Probably, and so do you. “You’re lacking in faith.” So there’s a faith quota that must be met before a person can be healed? “The Lord is strengthening you through this life event.” No, the only thing that’s been strengthened is my bitterness and resentment about being in pain everyday for the past 20 years. “The Lord has already healed you. You just need to claim your healing.” The ‘name-it-and-claim-it/blab-it-and-grab-it’ gospel at it’s finest. This line of thinking reminds me of The Law of Attraction. I just need to 1) paste a picture of a healthy, pain-free body on a ‘vision board’ and 2) visualize my body as perfectly healed and boom, I will attract my healing. Been there, done that (for years) – didn’t work. I’m truly amazed at some of the wacky things I’ve been willing to try just in hopes of being healed. lol “This will all make sense when you get to Heaven.” This is usually the last resort comment when people have run out of things to say. In those situations a simple “I don’t know why you’re still in pain” is an HONEST and appropriate statement.
Sorry for my periodic sarcasm but I’ve heard so many ridiculous comments regarding my chronic pain that I finally left the church about 7 years ago. I’m not going to single out just Christians though – I’ve heard idiotic comments from Buddhists, New Agers, Muslims, Atheists, Agnostics, friends, family, guitar students, strangers, etc. And I understand their ignorance because before I injured my back I was just as clueless about chronic pain so I do try to cut people so some slack. Nowadays, I don’t usually even bother telling people about my pain. It is exhausting trying to explain something that most people will simply never understand.
Okay, my rant is over.
Good luck to you and thank you to whoever wrote this letter.
lol I hear you about the “praying” thing. It’s a crock of BS. I went to a catholic school and prayed for many years before and after my injuries(10 years ago). Many times just thanking God for good things, not just praying in time of need. About 5 years ago I became a Deist after realizing it’s all a bunch of BS. A Deist is someone who believes there’s a God but doesn’t believe he has any influence on our lives while we’re here and certainly doesn’t believe in the God portrayed in the book of fairy tales aka the bible. It actually pisses me off when someone says “They will pray for me”. NO Don’t pray for me just please show me some compassion and understanding. That’s all most of us ask of others.
Sorry now I’m ranting. I’ll end it there.
Thank you for this letter. It gives me something to show everyone who is always asking me if I “feel better”. God knows I hate that question.
Wow – I can’t believe how much I relate to this entire article. If you switch out the word “pain” for the word “illness” all the above would still be true. I have had CKD all my life but became seriously ill at the age of 20. At age 27 I still haven’t had my transplant and illness is something I have to cope with around the clock. I also get severe kidney pains and now chest pains (along the way I also developed an aortic aneurysm ).
I also have depression but I’ve had that since age 10 because of being emotionally and physically abused, plus the loss of my nan and my mum far too soon and a ton of other stuff so I don’t even know what I’m depressed about any more, there is far too much to even recall at one time that most people haven’t had to deal with.
I hope you find something that works for you soon. x
Dear Anonymous (and all fellow chronic pain suffers here),
Thank you all for your words, I have read nearly all the replies as well as the original letter. I found this by (now happy) accident. I actually Googled “can’t cope with chronic pain anymore”.
I am a nearly 36 y/o Australian lady and have an inherited condition which doesn’t really have a name (it’s kind of weird and obscure).
The “umbrella” term for the base condition is PERIPHERAL NEUROPATHY. But there are thousands of types. My dad’s dad’s type was MS, in my dad it manifested similarly to Charcot Marie Tooth – so that’s what he was classified with, but it’s not really CMT.
In me, since 13 I have been diagnosed with (and have sold proof of) all the following: arthritis (knees, hips, shoulders, spine, elbows, ribs and hands), chronic fatigue, fibromyalgia, ibs, Facit joint degeneration and degenerstive disk disease, migrane, nodules in my lungs, inappropriate sinus tachycardia (rapid heart rate but can’t find a cause), and obstructive sleep apnea. I’m that bad I am using a wheelchair to do everything.
Our government regulations say I don’t qualify for disability because I can use the toilet on my own (but I’m too disabled to be employable in society opinion).
What they can’t figure out is WHY MY SKIN AND NERVES VIBRATE CONSTANTLY. It’s like a tuning fork or high tension wires humming.
Mostly my family are understanding. And my husband refused to leave me when we find out BEFORE the wedding, 5 years ago, that I’d walk down the aisle on a sick and would get quickly worse from there.
I say MOSTLY because there is one person who either does not want to believe it or just refuses to accept it. MY DAD. He who has been in chronic pain nearly my whole life time.
He who is also in a wheelchair and says to me that I just need to lose weight, exercise more, blah blah blah blah blah! I have cut friends out of my life for this kind of reaction and the opposite, the ones who wanted to wrap me in cotton wool and bubble wrap.
I will admit that I am very lucky that I have 3 doctors in my local clinic who will give me new prescriptions for any and all my medications when I ask (within the bounds of how much the prescription says I should be going through) with not much more than a quick check up to make sure my heart is ok.
I wish all of you suffering with chronic pain, for any and all reasons, as many good low pain days as you need and no more pain than you can handle at any one time.
Good luck to all those still searching for answers. I hope you find them. Remember is ok to give up searching for answers if that’s what YOUR body is telling you.
Listen to your body. Only it can tell you what you need and when you need it. No one else. Not even a doctor.
To Bel & the Author of This Amazing Letter,
I finally got diagnosed with CMT when I was 21 (I’m now 39), and it was ok at first – I had learned to cope with the pain & discomfort all my life so the diagnosis didn’t seem to matter. My condition wasn’t so much managed as it was ignored. I have worked continually without break since I was 16/17. I have been with my amazing partner for 20+ years, and we have lived a mostly ‘normal’ life. We had our beautiful daughter almost 9 years ago. And all this whilst trying to cope with chronic pain and illness as a family.
But it all fell apart around 6 years ago. Bones in my foot that suddenly snapped one evening as I rose out of an armchair led to multiple operations and this degenerative illness was suddenly was in my face. My ankle joint is currently being eaten by a very aggressive ‘sudden onslaught of severe arthritis’. And I now require 2 very serious operations to fuse & rebuild my foot & ankle. I have a great partner who really does try to understand, but it is so hard for him. How can I explain when I don’t know the words? Then I found your letter, and cried as I read it. You have so eloquently written how hard it is. I know how lucky I am, not just to have good familial support, but my GP is amazing as is my orthopaedic specialist. As I read the letters here I see how much more difficult life is without good medical assistance.
However, this changes nothing with my pain. Having good support & good medical help doesn’t make things any better, it just doesn’t make them worse. I am prescribed so many tablets to control every aspect of my pain, including opiates, but nothing helps. I can’t sleep properly, I can’t take my daughter for a walk, I have no quality of life. I also have been unable to give my daughter a sibling due to my illness and the guilt I carry for this is, at times, unbearable.
The reality of my condition is such that, if I have the next operation it will more than likely make me worse. I am so tired of fighting this, of being sore, of being depressed. Chronic pain is also a very lonely place. And to top it all, I have passed this horrible disability genetically to my daughter.
But this letter and all the responses have made me realise that I am not alone in this fight. That the world of chronic pain is not just my world, my fate. There are others here. Others whose stories & situations are far worse than mine. It is just sometimes difficult to see real life through the veil of chronic pain.
So I would like to thank everyone who has posted here. Thank you for helping me realise I am not alone. I will pray for relief for you, however temporary, as I pray for it for myself.
I totally understand stand what this person means. I try so hard to get people to understand how it feels to be in pain all the time. If you have never experienced being in pain every second of the day unless on tons of pain medicine because nothing works and someone in this kind of pain will do anything to be out of pain. Death sometimes seems like it would be so much easier than having to deal with pain and people who say they understand but yet still really don’t grasp the reality of how chronic pain interferes with everything from day today, trying to get at least one hour of great sleep. It’s so sad cause it’s like your stuck in a cage an theirs no key an you have to eat and sleep in a small cage where you can barely move and the cure to your pain is the key to get out of the cage. I am a young women only age 26 dealing with this chronic pain day and night. It’s made me so hateful because it feels like no one understand and all you can look forward to is pills that make you feel like something you really don’t want. I have had a lumbar spinal infusion. I have had chronic pain sense and the point was to cure the pain in my left buttocks and leg and after the surgery it has stopped in my left leg an now is in my right buttocks and leg. I hope one day I can feel what it’s like to not know what pain feels like without medication but I am starting to not even know or remember what living with no pain feels like.
I have had nerve pain in L4-L5 going on 4 years now and this is exactly how I feel every day. Try adding to this a wife that completely does not understand a thing of how this nerve pain affects me and keeps pressuring me to go out and get a job when I can barely pull myself out of bed most days.
I would like to add that I also have had cancer and when someone came up to me one day and said “How are You” and I went on to explain about the day to day pain I was having and she said, I don’t mean that I want to know about your cancer…I felt really bad because it was my day to day pain that kept me paralyzed most days….ppl are really concerned about things like the flu, stroke, heart attack and cancer disabilities more so than they are pain, this statement I might add made me feel less a person from them not caring about my pain and my thoughts and you wonder what makes us so depressed at times. I have 4 different types of arthritis plus DDD, diabetes and I am prone to infections. Most days I am house bound. Thanks for this letter as it so describes me in my walk in life…be blessed!
Thank you so much for such a beautiful and helpful posting. I took care of my mom who had chronic pain for about 10 years before she died and she handled it much the same way you are, with a quiet understated grace that my words won’t do justice. Hopefully your letter helps someone in a similar situation. Thank you so much for sharing it.
i just want it to end. All of it.
I agree. I lost my family because of it and just want to be taken from this world of suffering some days.
me too. except I want you to get better and feel healthy and happy. I can’t take more.
Thank you for your letter. It is how I feel as well!
Every morning as I open my eyes to greet the day I smile gently, as I have since early childhood. For a fleeting moment I am happy, full of the appreciative anticipation and excitement of another day. Then I move, an arm, a leg, perhaps just my fingers or neck; and the reality of the pain throughout my body hits me like a lightning bolt followed by a boulder crushing me.
Reality hits. Once again I realize that I will not be bounding out of bed to start my day, follow my dreams, work hard at the career that I used to be so passionate about. I will not get to drive to the office anticipating the projects of the day. I will not get to greet my coworkers and discuss the day ahead over coffee and chatter and jokes and laughter. I will not get to stretch my mind, solve the puzzles and challenges of the day, make mistakes or produce that which wows. I will not be driving home from a rewarding (or sometimes frustrating) day of work excited to throw off my work clothes in exchange for my jogging gear so I can run 3 miles and end up at the park on the swing set, before heading home to make dinner and collapse on the couch after a challenging and rewarding day of life! I will not feel the sense of completeness and belonging in the world at the end of the day. I will not be able to tell my friend or family member about the exciting project I am working on when they call to say hi. I will not get the hard earned paycheck at the end of the week that allows me not only to pay for my basic needs, but to plan for the future, plan for a vacation to an exotic place I would like to visit, plan for a good retirement one day. I will not be making plans for the weekend with my friends to go see the concert, or go out to the club or restaurant, because not only can I not afford to go on my overly extended tiny budget, but I can not keep up physically. I will no longer be making plans. I cannot dream of vacations or a comfortable retirement because I only have $5. dollars left at the end of every month after paying for the basics of life and the mounting medical bills. I cannot dream of the pretty dress in the window because I cannot afford to go anywhere anymore that allows me to wear that pretty dress. I no longer have the privilege of what most people take for granted. I no longer have the privilege of a “normal” life.
I wake up and gently smile at the new day. Then I move my arm, my leg, perhaps only my fingers or neck; and I once again (as happens every morning) I am reminded that I am Sisyphus, and the day demands that I once again I have to garner every ounce of physical and emotional strength to force myself out of bed, for the boulder awaits, and I have to push it up the mountain again if I am to get through another day. I have to push the boulder up the mountain with the full knowledge that tomorrow morning it will be waiting bedside, to be pushed up the mountain again. Every day is the same. I have become Sisyphus, life is the boulder. A boulder that is so heavy and painful that if I didn’t have pets waiting bedside with sweet, gentle eyes waiting to be fed by me, I would choose to ignore many days, I would simply roll over and cancel the day. But I cannot. My life is like an ever – repeating day … think the movie Ground Hog Day … an endless loop of maintenance of the basics of existence through the fog and frustration of relentless never-ending physical PAIN.
I have become Sisyphus. I am only 53 years old and I have been Sisyphus for 23 years now. I am so tired of being Sisyphus …
To those of you out there who think those of us who have life-long chronic diseases (that rob of our lives) somehow “choose” to live the life we are forced into by the limitations of our bodies (and everything that entails) … you need to re-examine the issue. Stop and ask yourself … would you give up everything you worked for and loved to live a tiny life on poverty level funds? I am sure your answer is no. By accusing me of choosing this life (with chronic pain) you are in essence saying that you think I am crazy and have somehow embraced my limited life style by choice? NO … I haven’t! I too had a life that I LOVED! I grieve for that life every day! I didn’t choose this disease … it chose me … it raped me … it took over my life in the most insidious fashion. I try to control it, I try to live with it, I put a smile on my face most days and try like hell to appear as normal as possible. I want to be seen as normal, I want nothing more than normal. I try every therapy, I research ad nauseum. I have tried every coping mechanism, medicine, alternative therapy, healing diet, etc., for 23 years. I exercise every day, I do everything I am supposed to do to control the disease. I work very hard to tame the beast. Buy please do not confuse my coping with with “choice”. I DID NOT CHOOSE THIS! I am just like you. The difference is that my body failed me at age 30. I was 30, so happy, moving forward full of big hopes, big dreams, big plans! The life I live today has nothing to do with any of those hopes, dreams, or plans. Just be grateful for your health, and grateful that you have not been handed “the boulder”. You have your freedom in your health … and I would give anything to have that back!
Not sure it it’s been said already?
1. If I’m in public and a pain bomb hits – it doesn’t hit because I’m looking for attention or feeling sorry for myself. It hits because I have no control over the fact something is very wrong inside my body.
In fact when said pain bomb happens I DON’T want people being nice and sympathetic to me, I want them to be NORMAL and ideally just ignore the moment so I can deal with the issue (it involves getting red, and tears – and it is deeply embarrassing). Get me a glass of water by all means and a tissue – but that is it.
Being nice and drawing attention to me means I have to expend valuable energy dealing with embarrassment and reputation damage limitation (Is she really fit to do that job?), as well as the pain itself.
The extreme pain bombs are transient and happen in addition to the general lower level of pain – please allow me to manage them with some dignity and in my own way.
2. I know that MY pain bombs have fall out for other people, sympathy shrapnell. I don’t want that, and sadly as lovely as people are – please understand that whilst I am dealing with safely detonating a pain bomb I don’t have time or energy to deal with making those around feel better about how my pain is making them feel.
I’m sorry but I have to try to have a normal life as much as possible, but I may have days where I am looking like death warmed up and where I really have no option but to tell people “yes, I’ve got a chronic condition- it won’t get better” .
Incidentally on that point it isn’t the go ahead to start interrogating me what it is – I’ll tell you the name and you can then do your own research. I’m actually sick of talking about it, and the only reason I’m talking about the thing now is that it causes the pain bombs.
So, please don’t start empathising, sympathising or crying with me, it will just have me running after you attempting to console you and not dealing with my issue; and sorry if you think distraction helps, it might do for a minute or two but those are fight or flight chemicals kicking in dealing with your upset and once they are gone I don’t have any left to deal with my own ongoing issues.
The best thing you can do is be brave and ignore the fact I’m having a pain bomb, or get some water and a tissue and that is it.
get out of my head..
What an incredible gift your letter is. Saying something to people doesn’t seem to have the same effect as someone else saying the exact same thing on your behalf. It’s bullshit but it’s true.
I didn’t have the headspace to read all the replies, I got to the TCM comment and the fact people were still going against the tide and the heart of the letter with happy ignorance just pissed me off and cemented why I have chosen to have very little to do with other people. And again, it shows how very very little people know against dis-eases like Reflex Sympathetic Dystrophy or as it’s now known as Chronic Regional Pain Syndrome.
The whole what works for me may not work for you and vice versa etc etc.
Anyway, I truly appreciate this. It’s spot on..
I just had a dr tell me perhaps it’s a mild case of arthritis that’s causing your pain. I was like, “MILD” ??? “Arthritis”??? I wanted to just disappear in a hole. I’ve been diagnosed with RSD but this dr said it was a trash can diagnosis and believes the pain can be treated with talk therapy and a diet change. I wish for you a cure and a pain free life going forward. I know your pain and desperation I’m certain. Jay
Thank you all for taking the time to write these letters. They convey such very important messages for people who just don’t get why I’m sick all the time and can’t get “fixed.”
There’s a lot I agree with having Fibro myself and there’s things I don’t agree with. I am very open to someone’s suggestions because I find new treatment very often. For example ginger shots and gingr tea really help, ginger’s an anti-inflammatory. Paleo diet really helps because carbs register as sugar in your body and excess sugar causes pain. Also if you eat processed foods you’re asking for a flare up.
I have the exact things going on. I have Chronic Fatigue Syndrome, Fibromyalgia, and so much more…:(
This is so helpful, I’m only 17 and I have had chronic pain for over 3 years, you have managed to put in to words how I feel. Thank you
I just recently asked my pm nurse if there was anything I could share with people. So they could understand what I was going through. Well unfortunately she said no not that she was aware of, maybe you could try the internet. Hopefully after sharing this with them they will have something to share! Thank you so much! Hopefully we can spred the word and people will stop looking at us the way they do. Thanks again C.D.
The comments in response to this letter are a beautiful illustration of EXACTLY the need for the letter.
You said it all, and you still weren’t heard.
Please don’t tell me to try something new. Right now I just need understanding of the exhaustion. Respect for my strength in continuing to try. And for others to face the possibility that their comments are a response to their OWN discomfort with being faced with someone in desperate, seemingly uncontrollable, intractable pain. That’s a horribly difficult place to be in – please don’t make it worse by trying to make yourself feel better about the chronic pain person’s condition by trying to fix them. No matter how well intentioned your words – please consider how your words will make the other person feel. Is the other person asking for advice on new approaches? Then DONT OFFER. PLEASE. You risk making them feel more alone, more at fault, and more exhausted.
I am puzzled by these comments,Why is someone trying to help you ”wrong” What if someone suggests something that you haven’t tried?? I would be grateful for any help or suggestions!! Mary c
Pain…some days it cripples…some days motivates me for answers…some days alienates…some days joins or unites me…some days I can’t get out of bed, think…some days I it makes me snap…some days I feel battered and belittled…some days I wanna be you…most days I just want to feel how I used to…most days questioning my pain makes it that much deeper…it really is not that hard to just accept and support someone else’s plight
hi,..i understand all the comments above.i dont have any disease but i have anxiety.but dont think that my anxiety is simple anxiety.my anxiety is actually lead me to have pain like real sickness.physcosomatic.from what i experience,my mind was open straight away.the central nervous system for anxiety work the same with chronic pain.cause before i have anxiety i also have some continuing minor pain.some incurable disorder, that i just realised later that it result from nervous system. how we repond to the pain.after reading so much blog then i know the secret mind and body connection is real.very real.even now when i have cut my finger slightly it feels so much pain.because i am so sensitive now.from now on i know the secret.but i told you even if i know the secret and the techniques like hypnotherapy,NLP,etc.it didnt make me better. i cant back to normal anymore.it is hard.once your brain is sensitive to pain it is hard.the more i know how the brain works the more i couldnt solve my anxiety pain.i got pain exactly like fybromalgia,chronic pain people.so frankly speaking i have neurological disorder now. i am so scared everyday my neck and whole body is so tight from anxiety and one day it will lead me to arthritis. i cant even want to imagine. .ii try har to fight but i couldnt.so i understand all of you chronic pain feel. it is much the same with me.every effort therapy,CBT,hypno doesnt work really well.it work for few minues and my body will come back to pain state again.see how our central nervous system affect us?? all my nervous system from whole body is messed up now.all organ/muscle system control by our brain.now i can feel all my muscle from head to toes is moving,tight,cramp,burning,seizures,stabbing etc.it is really scary and frustrated. i am not just have pysical pain but also mental torture.i have try my best to fight it but unfortunately once my nerve system already hypersensitive, i cant desensitize to normal again.i cant imagine if one day i have operation or open wound, cant even imagine.i dont know what my future withold considering every pain that i had. constant fear and pain. i just try to live this moment day by day, try accepted all the condition,surrender to God and try not to lose control of my mind.i pray for all of you.i know exactly what you’ re going through.life is hard……
My boyfriend said as I awoke in pain” I’m sorry honey , instead of complaining- get surgery and if you end up in a wheel chair I’ll push you” he actually thought it was funny and or sweet. Seriously? wtf I wake up in pain every day , no one understand this, be nice, do something for me . Rub my back, make coffee. It’s so depressing , contemplating suicide isn’t an option because I have 5 kids.
Dying inside.
Thats one of the best things ive ever heard….I hope u know that this opened my heart and I dont think u could have explained it any better:-):-)
You nailed it exactly! Im sorry you have chronic pain but am glad there is someone that knows EXACTLY how I feel! Thanks!
Kudos to the author.
I know the names of my conditions, none of which are visible to others, I’m not wearing wrist supports, slings, use crutches etc so anyone seeing me wouldn’t have a clue I was even ill or in pain.
I really can relate to everything the author has said.
While i do know the cause of my pain, it doesn’t make it any less incurable or easier to cope with and i am aware that as time goes by, my chronic pain will worsen.
For the past four years i’ve felt like a test case for those saying ‘new drug, try this’ or new natural remedy etc…
all this has thus far succeeded in doing is building hope just to continually have it knocked down.
I’m generally a happy laid back relaxed person who “pre-pain” had a lot of friends. I learnt very quickly how short their patience was and their misunderstanding … they were all getting quickly inpatient for me to recover from my chronic pain and debilitating disease so i could resume normality with them, they never seemed to grasp the fact i was never going to get better.
As the author was saying ” good days and bad”, just because i can do something one day, doesn’t mean i can do that or more again the next day.
Its extremely frustrating, upsetting, depressing and at times very lonely living with chronic pain long term or a lifetime.
Patience is a virtue and its something small we with chronic pain ask the healthy to at least try and have with us on our ‘not so good’ days.
Sherry,
I truly hope i’m wrong in how i read your last line, it came across to me as if you were believing that line yourself now.
If they can’t or won’t accept it or help, then look to those who will but please please never start believing your a party pooper or the burden.
I don’t know your family or their reasoning for this, i do know from my own experiences that some just don’t know how to process a loved one in pain. Its just too much for them to take in so they bury their head in the sand.
My husband does try but no matter how much I explain or how, he just doesn’t get it and won’t (or can’t be bothered to take time away from surfing the net) to read the authors letter above I forwarded him.
Its a constant battle just getting him to understand that just because i said in the morning i’d do somethin in the afternoon, then was in too much pain to do it, i can’t predict when this strikes and my plans have to change or be put off.
I’ve had a life of being very organised and always did what i said i would, now i can’t and he can’t accept that – so there are times where i just wish i hadn’t told him at all and got my support elsewhere.
We can never guarentee how others handle and
process how we are and what we’re going through, I guess we just have to try and not blame ourselves, we (chronic pain sufferers) already have enough on our plate.
I truly hope this came across in a good way, today is one of my worse days and the controlled opiates just aren’t taking the intense pain away today.
Please ignore my post to Sherry, I hadn’t noticed when replying that her post was made 7 years ago (2008).
Your article really spoke to me. Most people just don’t seem to be aware that their own actions are generally misguided, and although its from a desire to help, without understanding how to help appropriately, it just results in additional trouble for everyone. The hard part is knowing I have to turn myself into a hypocrite everyday by telling people around me that I’m fine, and pretend I’m happy, in order to avoid that misguidedness. One lady from work sees right through it, and somehow notices how angry I truly am (from pain, misery, isolation, etc. – my body language must shout it somehow, to a very few observant people), but she doesn’t know why and I don’t want to tell her.
My husband is in chronic pain and this article has been one of the best reminders of what he is experiencing every day.
He has been in chronic pain for as long as I can remember, sometimes it’s hard not to take things personally when he’s struggling or frustrated (which is daily).
I would like to see a carer’s letter also on this subject, it’s hard to cope sometimes and carer’s are often made to look selfish for wanting anything for themselves in life despite giving nearly every waking hour to keeping everything together and caring. I would never ever wish to swap places with my husband, but would like to know other carers thoughts.
I would love to show this letter to people who come round and suggest things such as exercise, holidays and positive thinking as a cure from my husband. People do not understand my husbands pain and frustrate me when they say ‘so you are the sold breadwinner, you are left to do everything etc’ I hate people who say these things they are idiots and don’t know my husband who would be back on his feet working every waking hour if he could.
Thank you again
Insight,
At the sake of going off topic on this very moving expression from one dealing with chronic pain, i share your view as my daughter has dealt with chronic pain for the last 5 years.
At age 13 she was diagnosed with Guillain Barre syndrome, had the spinal tap and this started the merry go round with doctors and the naysayers who did not understand, both doctors and family/friends. Honestly, along with scaring the hell out of my wife and family, had never heard of such thing in our family trees.
Subsequent to this my wonderful wife, who would tell any doctor who dismissed my daughters chronic pain they were clueless, continued the search to find the root cause. And trust me, they almost had us believing this BS too.
Eventually it was determined that she also had a severe autoimmune disease (CIDP), whereby the immune system attacks the nerves in her legs/arms and leaves her immobile half the time due to pain. It has been a struggle for her just to finish high school, has no friends or social life other than us, and simply nothing close to a normal life. Oh, i forgot to mention the severe arthritis she must deal with.
There is a national organization for GBS/CIDP who recommend yoga and/or accupuncture, but as mentioned by the original author – when you are in pain these things do not interest you !
As a father, I would give up one of my limbs for her to be healthy…..it is very hard on carers too. What i fear greatly is a story of an 18 year old in our area who recently gave up…and jumped off an airport parking garage to end the neverending chronic pain .
Two points here – we support our daughter every way physically ( many IVIG’s that cost a fortune, and we are not wealthy) and provide professional counseling when needed(us too).Second, for the people who tell us that God only gives people what they can handle – easy to say when you are not in the same boat, so zip it !
Thanks for the chance to communicate, because as the author said, noone wants to talk about this other than forums such as this. I do pray for everyone, and humor is important to keep your sanity – along with the anxiety drugs.
It is only through grass root organizations run by those of us dealing with chronic pain, will research be done to find accurate information and hopefully remedies.
So sorry to hear of such a young person going through such pain, yet not being properly diagnosed for years.
Its a huge understatement to say it must have been tough on all of your family. It’s even more difficult for the person in pain when a diagnosis takes such a long time, and can make the sufferer feel even more isolated.
I wish more people could understand what it is to be suffering with pain every day and what it means to have to give 100% as a family to helping them through every day.
I get tired of people suggesting more painkillers for my husband as the big solution, I get tired of lying to people saying he is getting better (to make them feel better some how?! Also to just to avoid them describing in detail their big fix solutions which I have already researched again and again and again. They mean well, but all I want is for them to accept he is not getting better and for people to offer some small way of helping even if that’s just listening to the ‘boring’ truth of our lives!
My heart goes out to all those dealing with chronic pain. I read this letter to my husband and I was almost in tears as it expresses everything he has gone through.
Thank you for this letter. I feel so alone. My mom doesn’t understand and pretty much tells me to get off my ass and do something. I feel like a failure as a mother because not only am I trapped in this chronic pain cycle, my son is also. I go to a neurosurgeon on Monday to get the results of a cervical and brain MRI, but the supervisor told me they came back unremarkable. I feel so discouraged and heartsick. I’ve been dealing with constant pain radiating from my lower back down through my hips into my legs and feet with numbness and tingling. All the tests come back negative, MRI, ENG and I cannot even remember what else. Please pray for me. I just want answers and if the problem can be fixed, lets fix it.
Thank you for your candid honesty.
I am sorry to hear you are in chronic pain without knowing the cause. I live with chronic pain myself, although I know why, which does make it easier I some ways to manage. For many years I had no support to access treatment which made life unbearably close to the edge. I relate very well to the rage you speak of when people offer a myriad of suggestions without knowing what they are talking about and what makes it worse is they believe wholeheartedly they know better than you do often labelling you as being attached to being a victim of life. Such thoughtless comments indicate a complete lack of empathy and compassion and in fact cause the one in pain to feel more isolated from normal life. I hope you find some answers and the distance between your pain and easier times gets longer.
I have been blessed to find a specific form of osteopathy and The Alexander Technique which is assisting me incredibly to live better. It’s been several years of treatment to reach a point where I am experiencing the benefits in such a way that I am aware of being able to do more and for longer periods of time. With a little more vitality there is a deep sadness at the loss of time to chronic pain and the depression associated with it. It’s an understandable response. I sincerely hope you find some answers and relief.
What a fantastic letter which was spoiled by your attack of Tracey who merely questioned what you are suffering with because she felt it may have been the same as her dad. I suffer from rheumatoid arthritis and understand everything you have said however at no point did Tracey try to sell you a miracle cure.
Wow… this almost reduced me to tears. The way you can describe exactly the way I feel, the problems I deal with, and the statements I constantly hear from friends, family, etc is mindblowing. Having chronic pain at a young age (22 years old), I constantly get, “You’re too young to be sick!” Most of my family jokes around and says it’s all in my head. Invisible illness can be a very lonely thing. Thank you for posting this, and for letting me know I’m not the only one. Best wishes.
Kayla the same thing is going with me. Contact or reply to me if you need someone to talk to. Im 24 year old male and i feel me jonts giving out more and more every day.
Excellent description of chronic pain!
I’d like to add one thing to it — Pain adds up over time.
Some friends of mine had a young daughter who had some health problems which caused her frequent, unrelenting pain. But her family did not always believe her and one of the reasons was because she was easily overwhelmed by little things. For example she might stub her toe and then cry for an hour over it. The thought they had was – well, if she gets so upset over such a small thing maybe her chronic pain is also something being blown out of proportion. As a veteran of chronic pain I was able to help them understand this better.
Because pain adds up. She might be able to get through the pain all day without becoming overwhelmed – horrible, awful pain that would cause the uninitiated to run off screaming into the night – but then some little thing happens like stubbing her toe and that it’s! This little painful event becomes the straw that breaks the camels back, sinks the boat and tips the scales. But the pain she’d already endured all day – no one saw any cause for this pain, or they they were so used to it that they didn’t count it anymore. But they did see the stubbed toe.
I was able to tell them that she hurts all the time and sometimes when she stubs a toe or has a minor problem that she sees as a mountain when it clearly looks like a molehill to you, that when this occurs to remember how much she already suffered that day/week/month/year and to understand that pain adds up over time. She wasn’t crying because of a stubbed toe, but because of the last sixteen hours of frustrating pain — and then the damed toe.
My daughter is suffering from a horribly painful cancer. This letter is an huge help. I don’t know what to say to her or how to help her. I wish I could take some of the pain for her. So, all I can do is be there and be quiet.
Well, thank you very much for that. You said all the things I have been unable to get my family, my colleagues, even my wife to understand. Sometimes my pain is very severe and I must shut down. Sometimes sleeping makes it worse. Sometimes it’s in both legs. Sometimes in the back. Sometimes in the neck. Often a migraine. But very often, it’s like I have the flu. I look healthy to most people. I keep going because I must. I must feed my family. I was poisoned by mold at my workplace. It destroyed my life. So now, it’s take a pill, and I need somewhere to lay. Or it could be I have so much brain fog I can’t think. I’m an electronics engineer. I very capable one. But not as capable as I could have been had my employer, which happens to be the U.S. Government, had taken care of their 70 year old buildings. IF they’d not moved people into a 40’s era building that sat empty for over 20 years with rain leaking in. Well, that’s what they did. They threw us in there and I’m one of at least three, probably many more, who has been destroyed by toxic mold. Doctors are totally ignorant of it. It “must be in your head”. Let me lock those doctors into that building for 1 year, and I’ll cut the pipe on the A/C compressor. Then a year later they can let me know if they’ve changed their mind. That’s what happened. A water damaged building with a broken HVAC system. I almost died, and I still pay for it every day. I could barely speak when in that building. Literally. I could not find the words to get my thoughts across. I had sinus surgery because it caused severe infections that scarred my sinuses so badly, it required surgery. I’ve had several other surgeries since then. There is no excuse for this. The most hurtful thing: they were aware and told DO NOT PUT ANYONE IN THAT BUILDING. They did anyway. So now, I suffer every day, and I live every word that was stated in an intimate way. God bless you, and I hope for you to be in as little pain as possible as often as possible. 46 year old male, misdiagnosed with “fibromyalgia”. Yeah, fibro. These docs don’t know what they are doing. Think twice when you walk into a workplace that smells like a rotting musty basement filled with fouled socks. Turn around, tell your boss “no thanks, I love my live more than my job” and leave, and don’t look back. I wish I had.
Joe,
I know the feeling with no one understanding the pain. My wife and a psychiatrist told me it was all in my head and I was crazy, like I somehow chose to be in extreme pain every day of my life. Now, my wife left me. I have to fight the pains alone. Luckily, I can still work right now, but it is a struggle every day. No one, not even friends, seem to understand why you look fine one day and are doubled over in pain the next day. Compassion and understanding have been replaced by selfishness in today’s world. They think things like “How does your pain and suffering affect me and my life? If it interferes with my plans, then get out of my way.” I’m sorry if I sound pessimistic, but my experiences with those accepting and understanding of chronic pain have been very limited. If it is not a visible broken arm no one believes you and thinks you are just trying to get out of doing things or don’t care enough about yourself or them to get better. Then you sink further into a state of depression and anxiety that only perpetuates the cycle of pain. I WANT MY LIFE BACK!! I am a hard worker and productive person, but try being those things when you are in 24/7 pain and can’t live your life. We are all living a life of survival, not living life. Someone in a higher office that is able to initiate change needs to provide funds for research into solving these devastating conditions.
Sometimes I look at my pain as a bill to be paid. While there are constants and never ending pain some of it comes from trying to live a little. Throughout the day I go work in my garden or something that needs done around the house. Then after the bill comes due and some times its only hours and sometimes its days. But every movement I make I pay for. For instance I drive my friend to cancer treatment. Its a hundred mile round trip with 6 hours sitting in my care because the waiting room is so painful to set in. Then for what ever reason I pay with one or two days of severe pain. I plan on not doing anything the day before to withstand the trip. So this can blow up to 4 days a week just for driving and setting and laying in my car. And yes I walk what I can around the car while there. But that’s why I feel so frightened because I’m their only way and although it gives be some self worth I constantly fear failing then.
Thank you for your letter. It made me cry what little I can due to the drugs that wipe my feeling away so that suicide is kept at arms distance.
I had a heart attack and coded. I remember a black swirling tunnel and my vision failed, felt my bowels release and the main point as I died is I felt no pain. I can’t stop thinking about the last part…….
Advise for my 15 year old daughter? As a freshman in a public Colorado High School, she found it difficult to get to classes on time and stay in class due to increasing, constant back pain with fatigue from idiopathic scoliosis. She missed 5 to 15 minutes of a class every day and also missed school because she had the flu a couple of times this year. She has doctors and hospital notes excusing most missed school hours and a school district Health Care Plan noting to modify her school schedule due to pain. However the school requested the district to file a case in Truancy Court. We just found out from a letter in the mail received on June 12th and I have made many phone calls and sent emails but the response is mostly “To Bad”. (As a side note, her school records show that when her absences increase so do her grades….)
I’ve had chronic pain since I was 13. I’m now 28, and have passed the “half my life in agony” mark. I suffer from headaches every single day, and migraines at least once a week. I also have IBS-C with massive and painful bloating, upper and lower back pain (upper due to injury, lower due to a 1/10,000 birth defect), anxiety and panic attacks which started at 21, when I was trying to get out of an abusive relationship at the same time my mother died of cancer (counselor thinks PTSD), random, isolated, and transient pains. My stomach pains are usually at their worst in the morning, every morning, no matter what, and the headaches are usually in the afternoon, every afternoon, no matter what. I don’t remember what it’s like to feel normal, anymore. I’m starting to have memory and cognitive lapses, which are absolutely terrifying, and odd symptoms which may or may not be cause for concern (could just be my body over-reacting, no idea).
I’ve had surgery, seen numerous doctors, one of whom told me, in as many words, that I would never recover, and was just “one of the lucky ones who gets to experience pain every day, forever” -yes, that part is a direct quote. He may have been joking, but it was FAR from funny- I’ve taken almost every medication, tried herbs, meditation, any number of -plausible- alternative treatments which my insurance covers or I can afford out of pocket. I’ve tried diet changes, hormone changes, exercise changes, types of activities. I’ve tried counseling, talking to others with similar problems, basically anything that seemed like it could have even a remote chance of working. I now get botox injections every 12 weeks, even though they barely make a difference -when the effects fade, I can tell, so it does make a difference- and I hate having my face go numb for a month.
I’ve found it so difficult to express to people, even those closest to me, that it’s not that I want to be this way, I’m stuck this way. It’s so tough to explain that, no, I really don’t need anything except to be left alone when I need to be alone, and I especially don’t need you coming to ask me if I need anything every hour (SO’s mother). It’s tough to explain dietary restrictions which are necessary to prevent pain, as well as explain why you need a ride to somewhere dark and quiet in the middle of a big (see also; loud and visually overstimulating) event.
It’s so difficult to explain to my college professors why I can be in a class in the morning, but have to leave before theirs, or why I’ll have to miss several classes in a row, even though they aren’t on consecutive days. It’s hard to say “yes, I’m feeling better” when they ask, even though I’m really not, but I’m also not stuck in bed. I’ve had to explain to most of them numerous times that no, my condition today has absolutely no bearing on my condition tomorrow or yesterday, or next week, and that no, even though I have to miss class for all sorts of appointments, there’s really very little hope of that changing any time soon.
It’s so difficult to balance complaining of the invisible pain with coping in silence, but it seems to be a necessary line to walk. I tried stoic suffering in silence with one partner, and was called a liar when I did complain. With others, I have made clear when I’m in pain, and they get fed up with whining. I have yet to find a good mid-ground.
This letter expresses all the things I’ve wanted to say, and couldn’t. Even most of the other chronic sufferers I know (personally, face-to-face) don’t really understand the breadth, because their symptoms flare up monthly or every other week, while I get maybe a few hours with minimal symptoms a day, if I’m -really- lucky.
It expresses how hard we all work to feel OK, and how hard we work to not let others suffer for us. How hard it can be to just pretend we don’t hurt just to do something we’ve wanted to, or how much we pay for it later.
I’ll be passing this along to the people in my life that may benefit from the insight that I could not, myself, provide.
Thank you for taking the time to post something which will help so many. We appreciate it more than you can imagine.
To all of you posting your stories on here, thank you for sharing; it’s sometimes good to know that we aren’t alone in our suffering, even though it usually feels that way. I hope you all, even though none of you are likely to read this, find relief from your pain, and support in your lives.
Every day, we learn a little bit more, and every day, we come one step closer to figuring out what we need to do to make sure that everyone has a chance to live a healthy, happy, pain-free life.
Most people do not get chronic pain. I did not fully understand chronic pain until it happened to me. Thanks to a horrible bout of cancer, the chemotherapy drugs gave me horrible neuropathy in not just my feet and legs but in my hands and arms as well. I have been on every known medicine for it for over a year now, and nothing at all is having any effect at all on it. My B12 was totally shot, and i do weekly injections . Guess what my body no longer processes B12 correctly. The highest count i can get is 210. Not encouraging. My Pain mngmnt doctor is consulting with a spinal institute about either putting in a spinal stimulator to block my brain from feeling pain in my legs, or a pain pump so that meds are put directly into my spine and brain. Personally i have begged both my Pain Management doctor and my neurology team to paralyze me. My legs are much worse than my arms and hands, and the pain is now in my knees and thighs. I want the pain to end before i have to make it end. Doctors and friends do not seem to get this, hell my family barely does.
I’ve read many of the comments here but not all so if anyone brought this up already, my hat is off. What the posts I did read never mentioned was the pain and sadness caused by the lack of a relationship endured by many with chronic pain.
I saw that some of you are married or are in a committed relationship and you are so lucky and blessed you have no idea. My fiancé left me due to the correlation between disability and poverty. She broke my heart and told me that she planned to stay single for the rest of her life because she no longer believed in love.
Recently, due to a Facebook error, I saw a picture of her with some guy and an engagement ring on her hand. This, however, is not a sob story but rather an example of what many of us are going through but may be reticent to discuss.
Yes, it’s nice when someone brings us flowers or tea but is that all we have to look forward to? There’s more to life than sitting at the table and conversing pleasantly over a game of connect four.
One of the worst things about chronic pain for me is the depressing thought that I might very likely never know love again. I appreciate the cards and kind comments on Facebook but I need someone to love passionately. I want to get married and live a life of deep devotion to someone and raise children together.
Some people react with abhorrence when I talk about this or ask someone out for coffee which I can barely afford. Apparently disabled people are not supposed to want such things and what is wrong with us for behaving as complete human beings when we should inherently know that such desires are forbidden us and to express them is the greatest faux pas one might commit. How dare we make normal people uncomfortable with our somehow unnatural affection?
I am alone. I have God, my parents and my friends when I am well enough to visit. I haven’t anyone to hold my hand or kiss goodnight or to delight in me as I do in them.
I am so sad.
Anonymous,
I completely feel your pain. My wife and son left me. I was called a liar and a hypochondriac. I’ve lost close friends and my family doesn’t believe me half the time. They say things like you need to get out more often. I have to sit down all day in pain at work, making the pain worse. Then I’m going to go out all night afterwards in more pain to meet people, who wont understand my pain anyway? I live alone and wonder if I will ever find someone who would live with me again like this right now. It has been 3 years of suffering and almost a year of loneliness.
i am and have for a while now beleive euthanasia is my only way out. i love life hate pain. so cofused. maybe today more meds will stop the pain and maybe even more will stop it forever. still again the moster is here and never goes away please give me the strength and courage to decide one way or the other once and for all.
Hello i know im a little late on my post but it gives some releif there are people out there suffering like me and have chose to speak. For the last four months ive been sufferinf from non stop issues cause d by some sort of virus or parasite that docs canr figure out. Im 24 years old. I thoight i had my whole life in front of me. But something from has been taken and i will most likely never be the same again. I cant beleive this happens to people. I know there are peiple who have beem suffering long but i d like to talk to people who are going through chronic pain like me. If youd like to talk about it my email is [email protected]
Hi, I know how you feel.
I have been suffering with nerve damage for 7 years without medical help, now I wished I had but then again I know they couldn’t fix it from day one. It’s either shut up and deal with the pain or fall in a deep black hole.
Now I have a 3 year old daughter and my pain is getting more intense my doctor said their is nothing he could do for me. My mussels and nerves are wrapped round my spinal cord like a wall climbing plant, it’s acting like my spine and it’s a birth defect that can never be fixed. I don’t know what to do I am 27 years old and my spine is tearing my mussels and nerve to shreds as I have a bone that’s sticking out like a knife cutting them all the time. One scary thing happened my back physically locked up whilst I was on the middle of a road. Luckily no cars where going down it couldn’t reach for my phone I was like a statue and no one there to help me. My ex boyfriend got worried as I was 2 hours late coming home he found me in the middle of the road standing there and his first reaction he thought I wanted to die. Next day I ran a bath and my back locked up again I shouted for help and no help from him, he left me in the bath for 3 hours in freezing cold water. I am scared of taking a bath but I force myself to do it all the time. The worse thing is I am a single mum trying to make do.
This is so great and correct I’m 13 and I have chronic pain. My mother will make me walk when I cannot and she has no idea what to do so all she says is push through it. She keeps saying if I change my diet or take this or just walk more and it will get better. It kills me because she has no clue how it feels and she refuses to believe it is chronic pain, because only one Docter has told us that, and we “need to rule everything out first”. That’s great and all but haven’t they already with 13 years of testing showing nothing.
My son who is commuting to college is the only one who will stop, sit with me and hold my hand.
My husband runs off and plays tennis 7 hours a day, 7 days a week.
My primary care doctor is suddenly treating me like I am worthless and therefore his attitude is: why bother trying to make your 4 level cervical fusion with foraminal narrowing and spurring, better? “Suck it up and take the oxycodone I gave you. You take pain medication so why are you complaining about dropping things?”
If I need a doctor I am going to the walk in clinic down the street. His attitude is pushing me into a depression and I do not want to go there.
They want us to go die and everyone knows it.
I completely feel your pain. Doctors don’t seem to care. My doctor told me it was constipation that was causing my pain. It was pelvic tension myalgia causing constipation, causing the pain. My wife called me a liar and a hypochondriac and has since left me, so I battle this hell I call pain life alone now. If my pain gets as debilitating as it used to be, I’ll be out of a job and on the streets. Chronic pain is serious and completely ruins lives. It is a scary place to live because your whole life shatters right before your eyes. I tried to take my life because of it and was unsuccessful.
Thank you for sharing this.
I’ve been in constant pain for 16+ yrs. after a car wreck. Drs. ignore or brush off my real physical complaints as being psychosomatic. I still have injuries that were never treated and some are creating new pain because I have had to try and adapt. I’m tired of being in pain and pretending that everything is just ducky.
If printing this and giving it to a few Drs. would make them start treating us with the respect we all deserve, it would be nice.
I am quite certain that, based on the angry posts I have read to this point…my comments may well be taken down but, I HAVE to say this.
I have been a chronic pain sufferer since 1989. My pain is intense and magnified by the growning number of lypomas my body produces quite prolifically. Each of them presses on a nerve…. or 12 in my body, amplifying the pain I feel.
Sleep which is restorative in nature, alludes me. I have not had more than a dozen nights worth of good sleep since 1989. There is not a position I can relay on to give me relief.
I have been diagnosed with fibromyalgia, myalgia rheumatica, pinch spinal nerves that cause neuropathy in many parts of my body, not to mention the aforementioned lypoma condition.
Here’s what I want to say…..QUIT YOUR EFFFING WHINING!!!
Positive attitudes and NOT DWELLING go a long way toward normalicy.
Yes there is exhaustion.
Yes there is a lack of reserve that can sometimes translate into a bad attitude or the inability to participate fully, or even at all, in life’s offerings.
BUT
Y’all are a bunch of pissers and moaners. You snap at people who’s good intentions are just that…good intentions.
People may not be able to fathom what we go through on a daily basis. That does not give any of us license to snap….belittle…. degrade or just get on a high horse of ‘Woe is me….you cannot possibly understand so just shut-up and sit in the corner’
Attitude goes a long way toward dealing with this or any other problem in life for that matter.
GROW UP PEOPLE!!!
STOP BITCHING AND START LIVING
Wait till you get older…people will understand then. I am 36 and my husband, brother and one other peer are the only people I know who for sure don’t have debilitating roller-coaster pain If not constant pain. Arthritis, carpel tunnel, seizures, muscle spasm that causes stiff back, broken and fused vertebrae, two with fibromyalgia and one incurable stomach cancer. Get away from people who treat you this way because you should only have to tell them once of your condition and let them know when you are having an immobile day. And please for the sake of others do not describe your pain to others because the majority of us are silently suffering too and feel disregarded when other describe specifics of their condition. The pain is your problem not other peoples. I get cranky and frustrated when I am immobile and decided at some point I had to give up the fight.
Try the ADD medicine that many children take, speed, as it will fix/help the exhaustion and fog and allow to consciously focus on other things allowing you to get through a day, (also reduces noticing the blues as you have desire to concentrate on other things).
I am here,also.Everyday this silent enemy sneaks into my life.I truly hate pain,and all that has led to it.My pain patch can hardly touch it some days,and I wish I could hide.
Your well written letter expressed everything I feel and have felt. After breaking L1 11 years ago, failed fusions, broken hardware, and now disabled and being told by every doctor I have gone to, There is nothing more we can do”, I am nearing the end. Loving family, beautiful life, I cannot afford to go to pain management once a month. It is an 8 hour round trip. Weaned off Opiates on my own last February. I have a chronic compression fracture of L1. A broken pedicle screw in T12. Kyphosis, Levo- scoliosis, Lordosis, degenerative disc disease, spinal tumors, a tumor on my sciatic nerve, spondylitis, and spondylosis. I just turned 52. I have lost 87 pounds this year. I have recently begun to experience loss of balance and have fallen several times. I am tingling and numb throughout my body at various times. I cannot find a doctor who wants to touch me. I take nsaids, aspirin, and alcohol now for the pain. I am making plans. Who will take my beloved dog when my Husband can’t cope ? Who will help him ? I don’t want to destroy my beloved daughter. I can’t live anymore. Unbearable.
I broke my arm and have suffered from neural sensitization syndrome ever since and chronic pain. I’m called crazy by my friends, can’t do anything at all, and am purposely bumped into by everyone so I have more pain. My sister hates me because she can’t do anything fun either (it would be unfair to me) and yells, and blames it on me. No one understands my pain, not even the doctors, I get pain everywhere for no reason, and can barley walk most days. I am 11 years old.
8+ years cervical and thorasic spine induced migraines daily. Its not proper to talk about ones pain, only authorized to: SUCK IT UP AND DRIVE ON.
The original writer was attempting to teach others how to empathize and understand those of us with severe chronic pain. Sometimes they know the cause and sometimes they do not know the cause of their personal hell. However, many people do not have empathy due to genetics. These individuals are cold and unfeeling. The technical title is Psychopaths. Psychopaths are not rare nor are they criminal mass murderers. They may have the Warrior gene as a rule and may be soldiers and policemen. People we need to be strong and willing to do the jobs many of us cannot stomach. However, they should recognize their failing with regards to being understanding and kind. They can only wear the shoes of people just like them, not those of us that are sensitive and flow with empathy. They don’t because they are incapable of really caring about you. Scientific American Mind magazine chronicled this trait recently and said that Psychopaths become very good at faking it as they socialize and live often lives as control freaks telling everyone how they should do things and how they should act. Plus how they need to get fixed.
Beautiful stated.
We are all suffering, in some cases the cause is understood, in many it is unexplained. I’m sure the one thing we share is the upset and frustration of not ‘looking’ ill. I constantly feel that I have to justify myself, convince people that I’m not lazy, depressed or simply a great actress. I worry that people’s patience will wear thin, that when they’re saying kind things that they’re actually thinking, “yeah yeah, here we go again”. I so desperately want to be believed. I feel as though I’m living a ground hog day existence, trapped in a never ending nightmare. I’m even beginning to bore myself! Like many here I act my way through life, pretend, lie to myself. I’m done with that now, I’ve reached a point where I’m starting not to care about anything, stuff the consequences. It feels like the last reserves of positive thought have dried up and that I’ve started a slippery slope. How do others keep a grip? My sense of responsibility won’t allow me to end it, but It’s increasingly on my mind. Life without quality is no life. Does anyone here have a small bit of strength they can share? Xx
Maybe this will help someone… It has helped my friend.
https://www.youtube.com/watch?v=ZqQNN27K17s
I took the time to watch this, mind over body?!?!?! Really?!?!? I’m a little insulted. I’ve been around the block several times with dozens of doctors, nutritionists, therapists, TCM, etc., and actually tried this therapy with someone in the video and it was confirmed that my chronic pain is not going to be reduced through my mind. I’m disabled from an accident, then got Lyme, and again, although I understand what you are trying to do, help in some way, please re-read the letter, we don’t need suggestions. Maybe by not suggesting and being understanding & empathetic, you can help by reinforcing mind over body in your own quiet way. I’m not knocking your idea, I’m just sharing that we’re getting off the meaning of the letter. It’s not to diagnose, give a prognoses, but just share what we, chronic pain sufferers, ask from those who do not understand.
To reiterate: “…please don’t make it worse by trying to make yourself feel better about the chronic pain person’s condition by trying to fix them. No matter how well intentioned your words – please consider how your words will make the other person feel. Is the other person asking for advice on new approaches? Then DONT OFFER. PLEASE. You risk making them feel more alone, more at fault, and more exhausted.”
Dawn,
You started the “hate” with your first mean comment. Yes, you stated what you wanted in your letter, BUT YOU POSTED IT ON THE INTERNET, so expect people to chime in. And for your information, even if someone doesn’t have chronic pain I will bet that they might have other crosses to bear. And please stop acting as if no one out there, unless they have had chronic pan has ever felt pain, or worry, or anxiety, or INSOMNIA! Everyone’s life changes when someone in the family has chronic pain. We want that person to feel better for themselves, because we hate seeing them that way, and yes, maybe even because we are a tiny bit selfish and want our children to once again enjoy their grandparent, aunt, uncle, parent, etc. (sometimes we get frustrated because the pain seems to come on at the most convenient times) I see what this does to my dad who is very sweet and sensitive to my mother’s needs. So yes, damn it! Every time I find something new out there, or hear about something that she could possibly try, I will bring it up. Even if she doesn’t want to hear about it. Because I know, that she is not in her right mind right now…dealing with all this pain. AND THAT DAWN, is what a person who cares DOES!!!!!!
This made me cry! This is everything ive ever wanted to say but couldn’t. My husband has stage 4 melanoma and hurting most the time and I live with chronic pain. Thank you for writing this!
Great letter. Said it all so well. One thing I’d like to add:
As a pain sufferer, it’s important for me to remember that everyone has something difficult in their lives. This is my thing, that’s all. It’s no lesser or greater a thing, than yours. It doesn’t give me the right to judge anyone who apparently has no chronic pain.
If you want to begin to understand what this is like, get the flu. Get a horrible case, where your body is wracked with pain, and you can barely move. Then, after you get all better in a week, try very hard to keep remembering what it felt like. Mark your calendar for one year from now. On that date, try to remember very clearly how bad it felt to be that sick.
Now imagine if you’d been that sick, every day, that whole year. Then imagine you’d been that sick every day, for the eight years prior to that date. And imagine that you’ll feel this sick every day for the rest of your life.
Imagine that your ability to work, and to be as successful as you can be, is now out of your control. You receive SS Disability. That’s crucially helpful, but it’s not a life. It’s a half-life, wondering if you’ll run out of money before you die.
Imagine (sick with the flu, remember) driving all the way to the store, only to find that, out of the 200 parking spaces, the two handicap spaces are full. Parking further away just is not an option. Won’t make it back to the car if I do. Have to go home. Didn’t get groceries again today.
Then, finally, tomorrow, you do get a parking spot, and you happily walk into the store, receiving nasty looks from everyone, because you don’t LOOK disabled.
Please, don’t try to fix it. And never tell me “You look better!” All it does is highlight that you’re continually evaluating my condition for me, and we’ve already clarified you have no idea what it’s like to be me.
I absolutely loved this letter! It made me say YES! This is me! I have lived in pain for 8 years. No one understands. My family and friends are great and helpful, but they don’t fully get me and the pain I am forced to live with everyday. I go to the ER 4 to 5 times a month. Dr’s and nurses know me already and many of them are fed up with me. I don’t blame them. I’m fed up with me as well.
I posted your letter to my FB wall.I have been ill for almost a year.Fought for my life in Jan of 2014.Was in bed for 2 months with a pic line for 2 months and suffered from sepsis.From bad doctor care 8 yrs prior to this having permanent tubes placed in my ears for pressure.When all along it was from a tumor growing on my facial nerve.This doctor put them in without doing an MRI to identify a menningioma growing on my facial nerve.I never had an ear infection in my entire life.But after he put these tubes in I had infection after infection.I seen why 8 yrs later why I was getting infection. I was sent to one of the best ENT after being disagnosed with mastoiditius (which means the bone would have been missing from a serious infection behind my ear).This was all due to having tubes put in my ears .I will say the tubes did help relieve the pressure but never knew I had a tumor until almost dying from sepsis 8 yrs after they were permanently placed.Permanent tubes are the size of a # 2 pencil .No wonder I was so full of infection. After weeks of fighting for my life they removed the tubes Feb 22 ,2014 after the infection was cleared.I was still in a chair unable to walk .I also have heart and organ issues from the sepsis. I could not believe this was happening to me.Like a night mare and I just wanted to wake up . Once the tubes were removed both my eardrums were damaged from the infection and the MRI they did at OSU shown a large portion of my skull was eaten away from the infection along with a tumor growing on my facial nerve behind my ear 1.8 cm x 1.2 cm. rather large,Once the ear drums healed up I began having pressure so unbearable it feels like as if someone blowing a balloon up until it is about to pop. With the bone missing around my brain I have spasms and with the tumor on my facial nerve it is inoperable. If they cut it could cause paralysis . Most meningiomas are benign and if it grows they want to remove the bone touching it avoiding the tumor. And radiation.I also suffer from weakness,spasms in my brain that make you forget who you are and facial nerve spasms. This is horrific pain.Weather such as storms, and humidity and the barometric pressure control alot of life.But every day I am in pain no matter what.I haft to have tubes put in every 6-12 months to help with the pressure then they fall out the pain gets worse and then I haft to start all over again. I am sad and have 5 great wonderful grown children and I love my Grand kids.I love the lord and want to be involved with all these passions of my heart.My chronic pain and health keep me from being able to commit to anything .I am so sad. Chronic pain controls my life.Thank you for your letter I have shared it.God Bless
What the feck
Thank you thank you thank you! Healing prayers and thoughts!
I have major back and neck issues, closures at C6-C7 with issues above and below, as well as extreme constant sciatica from closure at L5-S1, I cant afford the surgery that I need and am about to pop my head off my body because I just can’t stand to be in pain all of the time anymore. . .my family says I’m always mad and short with them and I don’t think I am but I must be blinded by the pain…I’m at my wits end and backed into a corner, I don’t know what to do.
I am so sorry 4 u. I am in same boat, only my pain is also in 1 leg, both arms and both hands. May I suggest you go on face book and join our cronic pain group. No one else can see what you post
Chronic Pain- We Are In This Together (Support Group)
It’s good to talk to others with cronic pain.
I’ve been living with chronic pain for 2 years now (I know – it’s nothing compared to what others have been through but pain is pain). I missed most of the first year of secondary school and have been struggling to stay on top of things ever since – but I’ve just found a chiropractor that I believe can help me greatly. When I found this letter online, I thought YES this is what I feel like summed up for me. I showed this to my mum (divorced parents) who has been absolutely brilliant and understands my pain and always listens to me and never makes me push my limits. I’ve been wanting to show my dad this for ages but he has not been so supportive (got lots of money but is refusing to pay for very expensive treatment that my mum can’t afford). He will organise a long drive to visit grandparents right after I’ve missed two weeks of school and then be totally surprised when I say I’m not going. He didn’t attend any of my hospital appts. until he got married again (so he looked like a good father) and is the opposite of understanding. Anyway, to whoever wrote this, thank you very much.
There is no room for the negative comments I’ve seen throughout the replies. Some of us CP sufferers already feel guilty, ashamed, and depressed. We do not need you a**holes contributing, thanks.
Well said.
There is no room for the negative comments I’ve seen throughout the replies. Some of us CP sufferers already feel guilty, ashamed, and depressed. We do not need you donkey holes contributing, thanks.
I was looking for articles to read because today I have really been struggling with my pain – for the weather is getting colder and wetter, so as you must know, that tends to make it much worse.
But reading this, I just have tears running down my face because it’s as if I wrote this letter myself. The hardest part is trying to explain all of these things to the people around me. It’s been over 5 years now and I’ve lost too many people just because they don’t get it or they don’t believe me. It makes it harder because I’m only 23 and sometimes I wake up feeling like I should be 80… I just wish people could try and understand sometimes. It’s so hard.
Anyways, I appreciate your words so much. And it’s comforting to know that I’m not alone – which I have always known… It’s just easy to forget when no one around you knows the feeling.
Gotta say…..what the author has said in this letter, is exactly what I have been wanting those close to me to know for years. The letter is brilliant! I’ve been suffering from Chronic Myofascial Pain Syndrome for 20 years. I’m 48 and was dx’d with Scoliosis when I was 13. Add a serious car accident and you have me! I have been looking for a very long time for something that could describe, well….me! The letter for people without Chronic Pain has ended that search. Thank you! I look forward to enjoying this site.
Amie
So I’m reading this letter and thinking to myself this is my life this is what I live, This is everything I want to say to those who don’t understand.
Thank you to the anonymous writer of the original letter. This year was bad, suffice to say with all the past still present the new this year taught me for the first time what catastrophic means when it comes to health insurance. I found myself telling God I as ready to accept the end of life and the next day sitting on a chair in the shower telling him I didn’t want to die. I play the games our government of “physicians” require me to play. I give my urine for drug testing at the pain clinic like a good girl and adhere to the paper I signed saying I would not seek anything above the Percoset 7.5/325 1 every 6 hours which does nothing but am told “do you want it or not?”.
If I am accepting what is being dealt me at least give me as much respect we give our pets. At this point if I become an addict I could care less if it allows me to treat my husband like the man I fell in love with, hug my children, enjoy my grandchildren, make a cheese sandwich.
I will never be immortalized like famous people who drug themselves to death in order to deal with their overindulgent life styles. I will never believe any physician who spouts the loveliness of a non opiod life style is upholding his promises in the Hippocratic Oath.
I will never trust any pain clinic that treats me like a criminal and allows me to suffer.
Chronic pain is a horrible way to go thru life. It is not reserved for cancer patients or those who are in pain from defending our country. It is not particular about who it attaches itself to and therefore anyone who is a ligitimate chronic pain recipient deserves the same respect.
Thank you so much for writing this, I finally feel undertood.
Thank you! You have put into words what I have not been able to explain for many, many years. I shared this on Facebook and think that I will email it to a few folks to be sure they get it. While I am truly sorry that you, too, experience chronic pain, it also make is a lot less lonely out here to know that someone truly understands.
Carmen
Oh how I understand. Thank you for writing this. I can truly relate. I am so lonely in pain with my uncurable disease. I’m just worn out. I’m starting to wonder what the purpose of such a life truly is.
Thanks so much.
I am so scared to read your post. I am afraid I feel the same. I am worn out too and so tired. Is this living? What exactly is “living”?
I was hit by a drunk driver head on at 115 mph 12 years ago. I’ve had 12 surgeries to fix two crushed heels, a crushed lower back, and a wrist, ankle, & leg that broke completely in half. I have a rod in my left leg, rods & screws in my lowers back, & a plate and screws on my right heel. I healed miraculously at 22 but now, at 34, I’m forced to go on disability due to my spinal fusion developing spinal stenosis. It ONLY pinches my sciatic nerves REALLY BAD when I sit down in my car or a desk….like the ones you have in offices. I’ve never been able to stand due to the leg and heel injuries.
I pushed through (OK…lived in a ton of) pain for years and never took pain meds, except on rare occasion, until this development. What ACTUALLY, TRULY, saved me from having to take pain meds were bi-weekly massages. If I went 3 weeks without one, I’d need a pain pill.
Well, as life would have it, my overtime stopped a few years ago when I got bullied and sexually harrased and massages were the first thing to go when money got short. My pain became unbearable. Yes, I know massages are EXPENSIVE but they saved my life and kept me off of pain meds. I REFUSE to stay on pain pills and, in time, I will get off, God willing. But, most of ALL, I REFUSE to stay depressed from the bullying, losing my independence, being in pain, and I will not be a victim to this. I have learned SO MUCH from pain and the life altering wreck 12 years ago and it goes a little bit like this:
Bad things happen to *LOTS* of people. It’s what you DO with those things that make you who you are. You can choose to give up, be bitter, a victim, hate yourself and others, blame the world (& God) for your situation and suffering, be miserable, make everyone around you miserable, and let it beat you. Pain wins. Your family loses. Your. Life. Revolves. Around. That. Bag. Of. Pain. Pills. Where is it? Don’t touch it! When can I take my next one? When is the soonest I can fill it? WHAT a life! Would you like some punch with that pity party? I can tell you that pain SUCKS, but you’re just NOT special and no one has to feel sorry for you, help you, or WANT TO BE around you. So don’t $itch when they all run.
OR, you can choose to be a hero, a VICTOR, and LEARN from suffering, let it make you STRONGER, capable of empathy once impossible to have, you can help others in your shoes and comfort and uplift them, and you can be a BETTER PERSON BECAUSE OF IT. God doesn’t CAUSE diseases or bad things to happen. He DOES, however, give us the opportunity & strength to become AMAZINGLY better BECAUSE of the things that this EARTH causes us to go through.
Many here are angry and bitter. I know, from 12 years of fighting through pain, that it changes you; it effects us and changes our brains. It makes us grouchy. It makes us miserable. But we don’t need to let it overtake our lives COMPLETELY. We CAN have GREAT days and LOVE our life! We don’t need to tell OTHERS to be thankful that THEY can do what WE CAN’T DO. WE need to be thankful for EVERY SINGLE THING WEEE CAN DO. Every day of life we HAVE is an amazing gift!!! If we ARE alive, it’s because we still have things on this earth to do!
Also, science….when we have a bad attitude, we FEEL pain more intensely. It’s a proven fact! Depression causes us to interpret pain more intensely and we FEEL WORSE! If we’re happy, we feel LESS pain!
I can remember the week after I got out of ICU, I was in my hospital room and I was in a LOT of pain that day for some reason….probably because I’d just had a number of major surgeries. Ha! Well, I decided I’d feel sorry for myself. It “wasn’t fair” I decided. None of it! Up until that point I’d been a champ! Not mad at the guy that hit and killed my bestie, and himself. Never felt like I wasn’t going to get through this and come out on top. (God helped…a lot lot. I take no credit here thx)
THAT day I decided to throw a pity party. And OH MY DID I START HURTING BAD FAST!!! All I could DO was FEEL the pain from HEAD to heels, LITERALLY! Needless to say, that pity party lasted all of five minutes. I realized that my body deserved BETTER and that my attitude was the make or break it for my recovery.
I’m SORRY for the longest post EVER but I hope SOMEONE out there can relate. Don’t let this beat you. Let it make you STRONGER. God DID dk all the hard work, I will say. I just had faith. But if I can do it, you can. Don’t ever think that this is it. It’s just NOT. UNLESS you THINK it is. 🙂
WOW! I’m not even sure where to start. I was Googling on this issue after having once again been asked to come help out at the church tomorrow and having earlier been “jokingly” called lazy.
Fact is I used to be at the church a lot. I worked clothing drives, cleaned up after events, painted, walked all over the neighborhood handing out fliers. I started out at my optimal weight, til I entered an extremely stressful time in life. I dealt with the massive stress, full-time job, raising a special child as a single parent, and loved going to the church to help and for events.
Then pain starts coming. First one thing then another. I ignored it at first. Though I’d put on about 20 pounds through the stress, I was still active. My foot began to hurt but I pushed on through and kept going to Zumba and volleyball. But it got worse so I dropped out to let it heal, but it continued to worsen. My hand was starting to hurt as well. I was tired all the time. I took to drinking a half shot of 5 Hour Energy every morning just to make the drive to work. That eventually became 2 bottles a day, just to get home and plop down tired. It was getting harder and harder to focus.
Every time I tried exercise, something else would hurt. I was an avid runner and had exercised strenuously before. So I have lots of home equipment. I kept trying my stair stepper but my foot hurt more every time. I moved to the hoola hoop just to cause further pain in my neck and back. I’d sit on the couch lifting arm weights even when pain shot through my arm. I put on leg weights and sat doing leg lifts til my hip started screaming at me.
I’d been injured in an accident many years before and had always dealt with a low level neck and back pain, but they were now going wild. I stopped at the ER on my way to work one morning when my neck completely froze and I was in terrible pain and in tears and managed to get to the ER without pulling off the road bawling. Took several shots and the entire day before the pain lifted and I could move my head again.
I started having various problems. Have always had sinus headaches but headaches were getting worse and more frequent. My ears were hurting severely, even had a bit of bleeding from my ear one night. I developed spontaneous nosebleeds, severe non-allergic rhinitis, rashes, jaw pain…you name it, it hurt.
The doctors started tossing out diagnoses…fibromyalgia, osteoarthritis, joint disease, degeneration, facet hypertrophy, plantar faciitis, TMJ, tinnitus, chronic fatigue…you name it I had it. I also had the thousands in medical debt to go with it.
Through all of this, I was fighting severe depression. Lack of adequate sleep didn’t help. It’s hard to fight anything when tired all the time. I’ve been noticing some heightened anxiety and trembling at times but haven’t talked to my doctor about it yet. And I’m still waiting on a hematology appointment to see if there’s some blood disorder.
All of this made it more and more impossible to keep up. I was using all my vacation days for doctors. I couldn’t concentrate and was working more and more overtime just to try to catch up. And the job was severely stressful. I’d close my door and cry at my desk at times over the stress, while propping my leg up, stretching and rubbing my arm, neck, back. I kept ice packs, heat wraps, pain sprays etc. at work. I had the jokes made about being old at work and church. I finally had to make a decision and left work not knowing how bad the financial crisis might become, but if I kept going, they were going to take me out in a straight jacket or on a stretcher at some point.
I love to stand and sing during the worship service but more days than not anymore I have to sit, and that with a pillow behind my back. I feel great one day and finally have the chance to get to the housework, but by the time I’ve gotten through all the dishes, my foot is burning and screaming in pain and sharp bolts are shooting through my hip, there’s a knot in my middle lower back and soon a headache starts. And some days I wake up that way. I leave physical therapy worse than when I went in.
So here I am being asked to help at the church, yet I know just an hour or two is going to leave me in pain perhaps the rest of the day. I’ve tried the “just push through” approach. Stupidly tried it just to hurt more. I’ve tried about every natural supplement the wallet could (and sometimes could not) afford.
I don’t know that I could say anything to my friends and family that they would actually “get”. So I make excuses not to go. If my son-n-law didn’t come over and mow the lawn, put the Christmas tree in the shed, take the trash to the curb, etc. everything would be falling down around me. I used to keep a spotless house. Now, I’m lucky if I have any clean dishes or clothes left before I wash them.
Someone here said that some people can be in pain and still be cheerful. That’s true but no one can measure another’s pain. The amount of quality sleep is also a factor. So I guess we all have to learn to tolerate one another in sickness and in health.
Very well stated. We can’t judge another’s pain levels. You also have to factor in other things too, like do you have family and friends that support you, are you getting enough sleep, can you still live a functional lifestyle like working and sometimes getting out with friends? If you can not do those things, it is hard to just suck it up and move on just like that. I lost my wife and son and have to find a way to function at work so I don’t end up on the streets. It is not easy to suck things up when you are faced with other uncontrolled stressful things in your life exacerbating your symptoms. Be happy if you have someone supporting you and by your side. A lot of us do not anymore because of these hideous conditions. We must face this demon alone.
Like the rest this is me also,been in pain for 17 yrs,from the start it was just pain after my spine surgery 3 times, they did not work is what i told my self, anyway then went from pain to horrible pain over the yrs,then to absolutly unbearable horrible mind bending pain,and now i have progressed to a handicap that cant even use a washroom or stop my self from going ,
I can walk 5 steps that is all , i am in a wheelchair now ,i go no where alone,i can do nothing alone , i dont seem to exsist anymore, and nothing bothers me more then a person saying ”’you look like you are doing better, or hey you should try this ,
I am in pain , i am not stupid , dumb , or a moron,
We should keep anyone that truly understands what we are going through very close cause trust me when i say there are not many out there that do,
I did read a lot of the comments and Thank you they are helpfull , but i dont know how to not hate my life anymore ,
Pain,on top of now prettymuch handicap,ontop of no control or feeling below the waste,and right arm,i can stand but not walk,right arm and hand useless, can not control bladder or stop myself from going,can not be the man my wife needs for the reason that just came to your mind,
I pretty much dont exsist anymore,i feel like i am just a body in my familys way,all they do is help me, and i cant even go watch them skate anymore
Can you help me in anyway , everything is slipping away and i have no control to stop it and i hate my very exsistance now,
I love my family , my wife, i dont mind the guy doing my wife even and i set that up, i dont exsist anymore and i hate , hate hate my life , and take the mindful crap they keep preaching to me and give to someone else, i just want to know how to not hate my life , I need to know i am scarde of my depression
ANY WORDS OR THOUGHTS ARE SURE WELCOME and i now would listen to anyone going through what i am before these people that did college and call them selves counselors and work out of a book, all they push is mindfull crap
Anyhelp or words would sure help more then any of them have
sorry this was so long and turned into my problems just wanting any help at all and not trying to have anyone feel sorry for me also
Hi! You are where I fear I am going. Don’t know a lot I can say. I agree about the “mindful” stuff. I think your experience and outlook are pretty much normal for anyone with chronic pain and debility. It’s kind of like a personal private WWlll. It’s not funny to anyone in it. I prayed for you.
Wow! All I can say is you are not alone. I have looked at this page several times in some hope of finding answers. One responder here talks about alcohol as a solution. The sad thing is alcohol does help with pain reduction. DHC helps to care less, as does THC. Opioids help, you need to take breaks to keep them working. Steroid injections can help (usually for a short term), but seem so limited in relation to the risk.
I’ve had 3 spinal surgeries and am ongoing radiculopathy over a 15 year period. It really is hard when you feel you’ve tried everything. Thank you all for sharing your heart breaking stories.
My husband just sent this to me. He’s in chronic pain from a car accident 8 years ago. We have 2 children (3 & 6).
What do I do as his wife? What is written makes so much sense, but living with someone in pain is so hard for the carer. He’s short-tempered and sharp-tongued with me and the children. I’m at the point where I want to leave because I am made to feel useless, so while it is so difficult to live in chronic pain, it’s hard to be the one that bears the brunt too. x
I see you wrote this over a year ago, but if you get this, remember, someone in pain may be harsh because they are not themselves and not truly living. Only hear the loving words and throw out the harsh and try, try, try, to not take any harsh words personally. I have been in terrible pain for 5 years and I just want to be healthy again and out of pain so I can be a good partner. I don’t see my health ever getting better and I am scared. I don’t want my husband to live with this, but I don’t want him to leave me. This only makes me want to end it all. I don’t want my daughter or my husband to worry or live with this. I want to move and live the way they do, but I can’t. It becomes quite scary to feel hopeless and I become agitated and short with people, but I only want to show love to them. I never felt rage before, but it comes to me now. I don’t like myself for being like this. I am trying to stop and only show love and less agitation since I don’t feel I am living anymore.
I wish nobody had to feel such pain and nobody had to live with someone suffering from it.
I am in tears reading so many stories similar to mine. I would only add to the eloquent letter that just because I have a good day (or hour or minute or second) or more likely a day when I have the energy to pretend that everything is ok, does not mean I am better or that I’m getting better. And conversely just because I have a bad day doesn’t mean I’m getting worse. They are just days, some better than others and some worse than others. I’ve come to not have long term expectations based on a single day, but to be grateful when I have a good one and grateful when the worst ones are over.
Thank you for this. I needed it today. Fifteen years of chronic abdominal infections have become my worst nightmare. These last five years have had me mostly stuck at home. Every time the pain rises to a hideous pitch, I have to try stop antibiotics, which makes it even worse, retest, and get the antibiotics changed. I’m almost ready to try the Phage treatment in Eastern Europe. Right now that’s out of the question, we have no money. Barely making ends meet. I’m in the US, going to Europe for an out of pocket expensive treatment is a far away dream right now. I’m a mother with my youngest still in elementary school. My husband owns a construction company, and has to be gone a lot. Right now he is out of town for two weeks. How do I get through it? Minute by minute. Everything this “letter to people without pain” says is the truth. I want to try go out around people, but they always ask how I’m doing. Loaded question. They really don’t wanna know. If I try explain, even slightly, they always have some crazy theories. I’ve even been told that the pain meds are causing my pain. How on earth do pain cause infections that I’ve had for fifteen years, and only been on a steady regiment of narcs for about 6 yrs now? It’s offensive to have things like that said. You feel like a loser. So it’s easier to stay home. Hate to even go on facebook these past few months as things have gone from bad to worse. I honestly don’t know what to do. Going to ER, when the pain makes me go out of my mind, is pointless. They don’t help. Even if my uro/gyn specialist says my pain is very real, and have no reason to feel otherwise. There’s nothing worse than when we start to doubt ourselves, get super depressed, feel like burdens, ….all I can say is thank goodness for these websites where we can find others in the same boots. It’s horrible feeling so alone. We’re not alone, are we. Way too many people suffering. Many of my family has turned away from me, forgotten me and moved on. My older kids try to help abit, come see me, but they have their lives, trying to live them. I don’t want to be a pain to them, so I let them be happy with what they’re doing. They say things get worse before they’ll get better? I can’t imagine how on earth I could get any worse without losing it. I have to hold on, my kids need me. Thank you for all your posts, I read them all and my heart goes out to all of you others that are suffering as well. We can DO this!!
I’ve been suffering with pelvic tension myalgia which has led to chronic pain for at least 3 years now. It went away for about 4 months and has now returned with other problems following it too, like chronic constipation and constant urination. Anyone that goes through a chronic lifetime condition seems to be doubted by everyone who has not gone through it. They tell you things, like just exercise and diet more. They call you a liar and a hypochondriac like my wife called me until she left me. Friends and coworkers look at you and talk to you like it must be no big deal since you look physically fine and it isn’t something that is seen by an mri, etc. Then your illness tricks you and goes away or tames down for a while, making you think you are healing, must be right? It starts to give you this false sense of hope, to only smack you down with more pain again. It’s that false sense of hope that is the most depressing part of a condition. It’s like the old concept of breaking you down over and over again to build you back up again, except it isn’t building you back up again. It’s only breaking you down over and over again with a false sense of hope. There has to be a visible or a sensed light at the end of the tunnel for sufferers of any illness or the thought of that light ever touching our lives again will always be darkness for us.
Well medical science has failed us all. So has our government.
Quick hypothetical If I consume THC via smoking, brownies etc. I find it helps relax and help sooth the pain but if I mix CBD+THC too it’s even more effective like sativex.
However that is illegal so if you use this advice it’s at your own risk. You will find if you do try this approach either you will find Cannabis is nasty awful stuff (if u get paranoid or feel sick) or The best medication you have ever tried for Chronic Pain. Doctors can prescribe the home office says at the physicians own risk but the home office basically frown upon any doctors who prescribe sativex for anything other than MS please check out things like RSO Rick Simpson oil he overcome cancer using an illegal herb Cannabis and extracting the good stuff THC the oil in Cannabis. If he followed the letter of the Law he would be dead. I personally would not extract like him, he uses Naptha lighter fluid (nasty stuff Naptha contains Hydrocarbons which are indeed poisonous), me I prefer the more organic solution 96% ethanol or drinking alcohol (needs to be 90% plus ABV). I hope this reply spurs you onwards and upwards. +447841649233 is my number if you want some help call me
Cannabis does not work for me and only makes me feel worse. It make my muscles spasm. Alcohol works for the moment, but I can’t drink all the time or I feel worse. I also want to feel well again, not drunk. If I drink I get nothing done, just like when I don’t drink since the pain is all too much.
How is this living? Get loaded and just be? Never work or really accomplish anything? Is this living? I can’t stand it anymore.
Thank you, Thank you , Thank you. I wish I could express myself as good as you. It’s good to know that you are not alone. And it is really sad that no one understand us unless is one of us 🙁
I’m 45, I have been living with pain since I was 20. Today I’m living with severe pain without taking any pain medication because they have run it’s course since I have been using for the past 20 years. My body has become immune to opioids and no relief from others. Four years ago my dose reached 250 mg of fentanyl patch (two and a half of 100 mg patch every two days) the worst thing was that the relief was minimal, I was addicted severely and started feeling like a zombie and lost will to live, I needed to end my suffering but I couldn’t because the thought of my kids and wife going through this betray and asking themselves why I did that to them, made me cry. I was good at keeping everything related to the pain, and the pain itself, to myself as much as I could, the less they knew the less they would worry, but it wasn’t easy for sure. Anyway, I made a decision to get off of the pain medication as the crazy thoughts became stronger, I knew it was the pain killers messing up my mind. I went through the worst year of my life tempering down on my own, cutting a little piece off of the patch every couple of days. The pain got a little worst, but over all, I would take this extra pain any day over the suicidal zombie feeling I had. What I have experienced being on pain medication was hell, I won’t say it didn’t help, but in the end it almost caused huge suffering to my loved ones. Take it from me there is no running away from the pain, all it is, is more suffering in the end for some relief you will experience for short time (if you look at how long you have to live for).
Recently (six months ago) I took opioids again and I had my life back for only about a week, they just stoped working. I guess my body still has memory from all those years before. Today, I refuse to take any pain killers, I deal with the pain the best I can, I’m depressed, can’t work, can’t sleep, can’t do things I enjoy, I constantly want to give up and sleep as much as I could, if I could, because it’s the only time I don’t feel the pain, as long as I don’t move while asleep. I’m alive but I don’t have a life, at least I have a loving family and this is the reason I’m still here. I think it’s pointless explaining to people without chronic pain what chronic pain is. It’s like explaining what a love for a child is to someone that doesn’t have a child of their own.
David I even tried silly as it was (but I suppose you know the feeling of desperation) 10x fentanyl patches at once then had a few beers and nodded off only to wake up for a doctor appointment the Doc said I was lucky I didn’t kill myself ( I don’t feel that lucky Cannabis is the only decent thing I have found for pain relief but THC is illegal even though with CBD+THC we could feel normal but the Government make our life feel worthless. Personally I believe if we had people running the country like us in pain constantly then Cannabis would be Legal. I am not a pot-head I just understand the FACT that cannabis helps and if it helps us that can only be a good thing…
Shame the ones who make Laws ain’t like us, maybe they would have compassion
I am with you! If you try to explain, just forget it. This isn’t living. I want out, but I don’t want to hurt my grown daughter or my husband.
I wish you health!
Hi David,
First, give yourself some credit for managing to come off opioids (albeit to excruciating pain) – not many non-chronic pain sufferers know how difficult that is! I wish you the best in trying to find something to give you relief. It seems that any painkiller either leaves you like you’ve been drinking or your memory is shot. Lovely choice but anything than ever-present or unpredictable pain.
I’m in my mid 50s and bottom line today (two years later), I have permanent neuropathy in my leg and spinal cord injury exacerbating the same leg. Was on tremendously high amts of opiates but was saved by a doctor friend who suggested Lyrica. It was the only way to come off the opiates after almost two years (fun times…not) – acupuncture etc didn’t help……. or maybe it does help for breakthrough. Who knows and who cares when you’re about to throw stuff across the room because of the ever present PAIN! I started breaking through on various Lyrica dosages and they’ve started me back on small amts of the opiates (not exactly a direction that I am psyched about). I’m working with a pain center that does functional rehab, interventional medicine (I’ve had epidural injections), pharmaceutical medicine, psychological support and support groups so I’m trying to keep an open mind.
This article is spot-on regarding suggestions for people who are concerned and want to help. I had a family member who lived with me while I was in a hospital bed at home. They desperately wanted to make the pain go away but all I needed was to know that somebody was there, just to sit with me. With chronic pain, so many people fail to understand that it is often not just the physical pain but the emotional and spiritual pain that comes along with it as we grapple with that huge 90 degree turn in our lives. Depression and isolation are HUGE factors for me. I have a close friend who wants to solve the problem right now, fire my doctors and tie everything up in a nice bow. Bless her and I love her dearly but this is a learning experience for all who continue to choose to be in my life (and it’s shocking how many “I’ll do anything-for-ya friends” have dropped off the side of the road)!
It IS good to know that I’m not alone with all of the feelings I’ve had.
It hurts
When can I give up without hurting the ones I love?, I have to apologize as I am not very good with words so I borrow from songs I admire. It’s been 11 years since the accident and one of the things taken was my memory, life with amnesia is odd at the best of times, only thing funny I have found is the people that ask what you forgot…. Unfortunately it didn’t leave my head empty but filled it with tinnitus and it never gets better but it can get way worse. I could pull most of this from one, song and that is “the sound of silence” starting with ” Hello darkness my old friend, I’ve come to talk with you again. Because a vision softly creeping, left it’s seeds while I was sleeping, and the vision still remains”. When I read this beautiful letter, I felt it is a testament to the line ” people hearing without listening”. My wish is people would understand my pain but it reminds me of “no one knows what it’s like, to be the sad man, behind blue eyes. One more song and it is from Terry Jacks, “Seasons in the sun” My wife left after the crash and I was able to fake it and buy enough pain meds to get me to work each day, now my kids are raised and I cant take another pill as my guts are tortured, It saddens me to think what I spent to try and keep going and raise a little family and sometimes angers me that the company I worked for let me go cause a cripple was not a good image for a construction company, the counselors told me I needed a hobby and I took up prospecting for the peace I found, It has been two years since I have been to my spot and I can’t quit til I see it one more time.
That you for letting me air out my feelings with out being told “we can commit you if you plan to do harm to yourself,” I always refuse to sign that letter cause the harm is already done, this is the after of it.
David
Right In my honest opinion of Chronic Pain and pain medication. Now personally I have tried everything from Paracetamol to Fentynal which is roughtly 80 times more potent than morphine for me they do not work they just bring other problems. So I went to Amsterdam for a little education and I discovered the benefits of an illegal substance in the uk anyways THC now THC is wonderful it helps with depression which as a chronic pain sufferer depression is usual normal (depression is a bitch). So then even more research and I have discovered the only way I can be pain free is to break the Law or go to the Dam, now there is a lot of hype on the internet about CBD helps with Chronic pain etc in my opinion and many others, CBD is excellent in combination with THC for chronic pain but illegal. So be careful CBD by itself helps a bit like THC helps a bit. I can extract THC and CBD in it’s purest forms to mix for a medication and I am willing to help other people with instructions on how to do this….
I am not suggesting to break the LAW but the LAW is hurting me daily. Now for people who wouldn’t dream of smoking it can be prepared so you don’t have to smoke for people who want to be straight headed and not high there are simple rules to follow as in CBD to THC ratio. It’s basically like making Sativex and if you people are like me you have probably already researched this. Unfortunately there is no exception for Chronic pain sufferers Sativex will only be prescribed if you have MS and a lot of the time the doctors will not prescribe. Yeah I have got high before but as a chronic pain medication Cannabis has so far been the best option more so than morphine oxycodone Fentaynal.
All these substances are highly dangerous with a massive list of side effects.
CANNABIS help plus our government says it’s illegal…well industrial hemp as they call it is Cannabis L sativa that is the plant name or latin name the genus. I hope I have helped someone.
My late husband once said, “Pain is the loneliest place to be.” Its something you cannot share because the other person cannot feel what you are feeling. There is no way they can understand unless they are living with it themselves and walking in your shoes.
He was so understanding. I have suffered this since a child, being born with stenosis in my C1, a genetic disorder causing the type of fibromyalgia one is born with.
I don’t deal with it with drugs. I refused those pills back in 1973 because that is when I learned they wont CURE me. I turned to yoga. Its the only thing that has helps me cope to this very day. That and hot bath soaks with epsons salts and typical organic creams and Natural pain helpers like ginger root teas.
The thing that bothers me is others telling me, “I KNOW your pain, when I know who they are and know they have not my birth defect. I learned long ago to not share my pain. I just keep to myself and avoid people as much as I can.
I’m trapped with hyperacusis. Everything is unbearably loud and sounds cause pain. If I go outside I’m enduring as much as I can. It is exhausting. It’s impossible to have any control of the outside world. So I go out and accept the pain but I’m isolated in this bubble of “tolerance” and “mindfulness” as I try to stay in the moment and get from place A to place B. Sometimes I’m trying not to have a panic attack if I go out and then feel trapped in not feeling able to make it all the way back home. Sometimes I’m holding back when the sense of fight or flight makes me want to lash out at people. The world has become overwhelming. It’s slowly becoming the new “normal”, accepting being constantly overwhelmed, but the pain is always there. It burns, it spikes, it throbs, it fills. Chronic Pain is lonely and isolating. People are so set in their habits it’s just easier to keep to myself than to have to keep reminding them to pause their noisy habits. They don’t understand what “quiet” means for me… it’s pretty much impossible. If anything is ever quiet it is then filled with the rings, beeps and droning of tinnitus. I’m trying to tolerate every moment and it’s hard to feel for what reason if it’s all going to be over some day anyway.
I can say that out of all the things I have tried, CBD oil did prove effective in blocking out some pain. I can’t say it will help all chronic pains, but hearing about how it helped someone else with intense nerve related pain was helpful. It was just mentioned and left at that, not pushed or lectured. I appreciated that.
I can relate to your condition completly, Through various dissasters in my life i have ended up with multiple sychosamstic bodily pains and tinitus in both ears which prevents me frim living a normal life, its heart breaking for us all, It is a living hell every day, i do my best to try and act as if there is nothing wrong with me and of course people think im ok. If only they new. My relatives have no idea the pain i endure every day. No quality of life and no hope of getting better. I have tried everything to improve my situation but nothing blocks the pain out. Medical professionals have no idea what i am going through either, just hand out antidepressants! I pray that in the future a solution will be found for those who suffer with physical and sychological pain. For me its about quality of life of which i no longer have. A miracle is what we all need.
I have been living with chronic pain now for almost 5 years. Was diagnosed out of nowhere with muscular dystrophy. My doctors all agree that something more is going on. I have good days and bad, but something always hurts. I have pain in my muscles and joints, my nerves are irritated and my hands and feet are swollen. I go to the Mayo Clinic in three weeks, I hope they have some answers and some way to help me deal with the pain. Taking 6 painkillers a day and feeling like they are not helping has me in a deep state of depression. I am almost 39 and just do not see how I can live the next 30 or so years like this. I have read this article probably 3-4 times and sent it to those close to me because it gets right to the heart of what I feel on a daily basis. I don’t think anyone who has not gone through dealing with chronic pain can understand how abandoned it can make you feel.
Jason,
Did the Mayo Clinic help?
I went there and it was such a disappointment that it only made me feel worse. It also cost me a fortune to fly there and stay in a hotel for a week.
I sure hope you found help! I only found pompous doctors who didn’t care and I was treated as less than a number.
Thank you! No one understands! And Doctors are good at acting like they care and are compassionate, however they are not in our shoes and they will start looking for anything to blame when they can’t figure out a reason or help you in any way.
I skipped all of the replies and just sat dr “I understand”.
I have undiagnosed chronic pain for three years that may have something to do with also having OCD and anxiety. It rotates between headaches and debilitating chest/stomach pain. I have become incredibly depressed. I can’t work, because it makes my pain and mental state unbearable. So I mostly sit at home alone all day, rotating through activities and hoping to find one that does make my condition worse. Sometimes the simplest activities make it worse. Medications have helped some, but the side effects I get from most aren’t worth it. I decided to just go off meds entirely and want to try something like marijuana–more natural. I’m tired of having to adjust to new medications and suffer through the withdrawal process. I’m tired of side effects that are sometimes worse than my actual problems. I’m tired of bouncing from doctor to doctor and feeling like no one knows what to do with me. I’ve developed a distrust for doctors, especially psychiatrists, because they are so eager to just put you on medication and send you out the door. Has anyone had success with weed? I just picked up some CBD oil but it hasn’t done much so far. I’ve been smoking it with a vap so maybe I’m not doing it right.
I know what is like to suffer from long term chronic pain. Its been 21yrs now I had to give up work in 2011 .
I have been bullied by my neighbour who say that there i nothing wrong with me and how i should get off my fat lazey arse and get a job . This hurts so much I just wish they could feel my pain for a day it would floor them. Because of them nobody talks to me. I feel so isolated and so sad
Thank you for this letter. I have tried for years to come up with the right words to explain how it is living with chronic pain. Although like you stated unless people experience it first hand it is hard to relate to. My friends and family will hopefully understand me a little better when i show them this letter. That is if they take the time to really read it and realize that I am doing the best I can do in my situation. Good Luck
As a sufferer, myself, I can say how true this article is! Also, I’m done with crying for help through texts that come off more blunt than subtle, like when someone asks how I am and I respond, “Hurting like always cuz that’s life…” and when questioned, feeling forced to play it off as a joke ??… So NOT funny. I don’t even know what to do!! I have symptoms of fibro, but I’m 12. And before people say I’m too young……. I am NOT LYING, EXAGGERATING, OR BEING A “COMPLAINER”. I have been told that I complain too much and I really think people might a mental break down if they lived ONE DAY in my pain when I don’t even know what’s wrong with me. I’ve been testing for Limes, Juvenile Arthritis, gluten intolerance (ya- I’m pretty desperate), and more. I even got this weird murcery thing injected, blood drawn, and a CAT scan. Oh yeah! And physical therapy (which made things worse). Okay, I’m really sorry that I am using this to “dump” my complaints, because I really don’t know if this is benifiting anyone but myself. I’m sorry. ? I wish luck to the sufferers to have all suffering go away, cures to come, and happiness. Don’t give up. Please. No one goes through life without hardships, and if you face Chronic Pain, this is your hardship. Don’t loose faith. This happened for a reason. This is the tough part of your life, and if this goes away, or you can live with this with persistence, you are like, winning life. 🙂
Thank you.
I thought I was the only one who felt ALL these things.
I have stopped doctors, alternative medicine, PT, so I am NOT TRYING TO HELP MYSELF.
I dare the … who offer the comments and advice to live ONE DAY with my suffering and open their mouths again.
I so much needed to know others know too.
Tara
Pain. Doctor’s don’t really give a s*** because it isn’t happening to them. After you leave their office your forgotten until your next visit. Then they want to ‘not’ give you the appropriate pain meds (opioids) because your viewed as a ‘drug addict’. Yeah, Doc! I went from a 800 credit rating and gainfully employed to bankruptcy for a handful of stupid pills. Don’t all recreational drug users do this to get their high? As a former medical provider I put the majority of blame on the non-caring medical establishment, ignorant politicians and the draconian DEA for the majority of suffering chronic pain patients have to endure. I hope they all have to endure what they have burdened us with.
(Later that next year) – Dear Kelly,
Pisses me off, what You wrote.
But,only because it is so true.
(Didn’t mean to spread this out so badly.)
We’re still enduring the legacy of the only US President who was forced to resign.
Me too ! Amen ! I recently moved twice within the last year and it severely injured me even further than I was and horribly exacerbated my pain
Before moving I was the victim of false allegations and with no prior criminal history charged with a felony offense of threat to injur while simply standing up to a horrible young female dental receptionist who was verbally abusive to my friend receiving a dental consult for a year long tooth infection and on his 3rd round of antibiotics!
Facing 11 years in prison due to fabricated lies from a barely 30 year old bully who described me as tall thin with long blonde hair big fake lips and dressed like a stripper in the police report (i had on a long sleeve round neck blue teeshirt and long jeans ?)
my attorney, which I paid thousands of dollars, tricked me into signing off on “discovery” not explaining what is was and never spoke a word in my defense. He said if I didn’t sign it “it was basically like telling the prosecutor to F off”
Being so Ill going through multiple withdrawals in horrible pain and state of mind no doctors in this state have shown me any compassion and i was turned away at urgent care
Do not trust law enforcement or attorneys
If police are ever called it is a good idea to ask for a CIT (crisis intervention trained) police officer ~ the CIT program was created with the assistance of NAMI the National Alliance of / for Mental Health 🙂
May God Help Us All !
Thank you. I have had chronic pain for three years now and struggle to help people understand what it’s like. Your letter has a voice and speaks for those of us with chronic pain, I will share this with those who find it difficult to understand what I am going through.
I’m in the process of tests. The past couple years I’ve had days were everything just hurt so bad. Kind of like my joints had allergies. I get extremely fatigued, dizzy upon standing, really weak like my body weighs a ton. The thing that’s hurts me the most is i want to be a good mom and feeling at times i am failing because of this pain. I have two little girls one is almost 3 and the other is 3 months. I should be enjoying this! Everyday i fight through and every morning i wake up cracking and swollen. And do it again and instead of enjoying these beautiful little girls im just focusing on getting through the pain. The pain started getting worse during my pregnancy with my last one. Now I have days where I just push and push and try my hardest to get up and do my job. I’m a stay at home mom and if you don’t already know the Intel multiple jobs. My husband works all day 6 days a week. I don’t have family around to help. He comes home exhausted and I do my best to make him comfortable. Then at 10 pm I lay down and my body just throbs. I’m at the beginning process of this and I’m scared to say the least but I’m a tough women and mommy. But some days I feel so defeated. All I want is to be everything my girls and husband deserve and yo enjoy them without this PAIN!
I understand what you are all going through. People think my pain is in my head . After three years of useless doctors , painful tests , money out the window, Blahhh Blahhhh from all these doctors . I diagnosied MYSELF !!! When I went to yet again another doctor he confirmed my problem , Peripheral nerve neuropathy in my feet . When after three years ,,, I came home and CRIED !!!! Why didn’t any of these SO-Called doctor diagnosis this !!!?!?!?!
I’m in chronic pain. To get pain pills from them was like pulling hair !! Do they really think I enjoy being in constant pain??????
Friends think I’m avoiding them ,, when I tell them .. “” Please don’t come over, ” I’m just not well.
I’m losing. Over 4 years after failed back surgery that was supposed to give me back my life I am 100 times worse off and living in unending pain. At best it is a 3 for me, enough to send my sister to the hospital I am sure. Normally it is a straight, constant, unending, un-endurable 6. Minute after minute, hour after hour, day after day after week after month, and now years after years. I have no more tears. I have built up the muscles. I read the internet [always short news because I cannot concentrate longer than this, play computer games, watch TV, to try not to think of the pain, but it is always there, pounding, pulsing, angry, throbbing, beating, screaming at me, eating away at my sole, my mind, my will, my body.
I don’t finish anything anymore. I cannot sleep. It cost me money to have work done for me that I used to do myself always. I cannot put on socks, I cannot trim my toe nails, I cannot wash below the knees and my tennis shoes are tied with knots very loosely so I can slip into them when I am tired of crocks. It hurts to go to the bathroom, and I cannot not do it. Everything is a tradeoff. What I do now, today, this week, IS going to cost me in pain. Standing up from this chair will require a mindset to prepare and accept the pain that WILL come and it takes more preparation for this today than it did last year. I’m losing.
I cannot get myself to do anything but small anymore. I cannot block it out. I cannot medicate it. I cannot cure it. I cannot stop it. I cannot deal with it anymore, but I have no choice. I do not want to die. I am too young and want to live my life. I want to run, swim, play, camp, fish, play guitar, built, fix, create, but I know my life is now shorter and everything is painful. I lost not only independence, self-determination, the ability to enjoy, but I lost years off my life too. I will die 10 years sooner than if I did not have chronic pain. Perhaps tomorrow from lack of sleep, heart failure, lack of exercise, poor health from opiates and the attack on my nervous system that pain is. I am losing
It is so much harder to get up now than in the beginning. Another day with pain to not enjoy. Another afternoon sitting, hoping it eases so I can do something productive, anything positive. I just want to contribute. GOD grant me 1 day, 1 hour, 20 minutes free from pain. At least let my mind have a break from the mental war that is pain management and fighting pain. I am losing
As the years progress and I see 30 more natural ones in front. I am filled with fear. I cannot endure many more years like this. I do not have it in me to fight like I did 4 years ago. I am losing. Every action is a decision. Every move is painful. I have to calculate the payoffs of anything I want to do and as time goes on I no longer see the benefits in enduring more pain just to pick something uo from the floor, to fix something, to put something away where it belongs. These are all actions that do not need to be done and cause pain so why do them anymore. Why live like a normal human anymore. I am not normal. I am losing.
I have no patients anymore. Everything hurts me and I need relief, but there is none to be offered. I am loosing
I hope you haven’t lost. I wish for you that moment of pain free life. I am losing too. I’m scared
Just want to say your not alone.
I have been dealing with constant pain for many many years, but it’s my wife with the constant pain. She has arthritis and fibromialga. It’s always hurt to see her like this. I’ve always stuck up for her canceling plans and not showing up for family events.
This February 13th 2016 we got hit by a drunk driver. Now her pain is much worse and I may be in the same boat. It sucks not being able to take care of her like I used to.
I have sat currently spending my 3rd hour on this webpage and have read 2/3 of all these comments so far. I have barely seen anyone who has mentioned this but i MUST:
Most people do not understand chronic pain in your daily lives and it is fucked up and sad. I want you to all know there are people who care and are willing to stand by you instead of just make suggestions and blame AND It is fucked up how many people dont respect or understand chronic pain. My fiance suffers from chronic pain in neck and head 24/7 365 for over a decade and has asked the question of suicide herself. I DO NOT understand what it is like to have chronic pain. But I understand what it is like to be alone. You are not alone. This probably counts for nothing but there are people like me, non chronic painers, who try to understand and love you as you are anyways. My heart truly goes out to all of you. Please never give up!
Nick, I commend you for sticking by your fiancé, and making the attempt to understand what she is enduring (and I also swear A LOT on most days!). Thank you for your words at the end of your post. I think your fiancé is very luck to have you. I wish you the best.
Hi Nick, I have been in a very similar situation as yourself as my wife has been completely disabled by Chronic Pain now for over 11 years in her neck, back & head. This Pain took my completely healthy hard working mother of 2 kids &, in her own words, trapped her inside her shell of a body! Shocking, scary, frustrating, Fucking Cruel disease are only a few of the words that spring to mind.
I however do understand Chronic Pain as I have suffered with terrible back pain from a fall I took in my teens, fracturing my Lumbar vertebra & snapping my breast bone! I am now almost 46 years old, my wife 42 & we are just like you & would never have even thought of parting ways. Yes our life has had some cruel moments & there will be some more to face but I could never imagine giving up. The Suicide question arose here too & that was a scary time for me & I had to watch her & see her in severe pain & me helpless to take it away. Heart Breaking…but Hey we came through that dark time too. With the help of a fantastic GP & Neurologist & pain Clinic we are were we are today…still very much in love…we lost friends, gained a few more but perhaps the hardest part is to think my two sons lose out on active parents. But even they seem to understand and in their own ways they are both excellent healers & I am so proud of both of them.
Nick you are a guy with a Heart As Big As A House & you are a Healer. Without men & women like you that do not understand Chronic pain but are willing to help in every way anyway then folk like your Missus & mine would never be able to manage what can be a terribly lonely life. They would perhaps not even be here at all. So always give yourself a pat on the back because you are an exceptional human being man.
what is giving up? Accepting the pain and continue to suffer? Or being in a pain free place and moving on to a peaceful place? Or is that considered selfish because the ones who aren’t suffering want us to be here for them?
Being free from pain is where I want to be.
All I can say is that I came across your site today, I particularity bad week. of not wanting to carry on anymore. Thank you. Your words have helped me feel not alone anymore. Thank you x
Yes! I so agree with the original story. It’s me life with injuries, colon resection, fibromyagia. Severe anxiety. I’m at the point every test just shows. You are decondtioned and depressed and your fibromyagia is fairing up. I live in chronic pain. Some days I need help from the family others I get by and indure. I hate when someone says to me push through it! Snap out of it! It will get better if you take a antidepesents! Or I love this one. Have you taken your pain pill yet? My doctor finally said with a caring message she moved her seat close to me. She said sometimes we can never find why someone is feeling so bad….Wow, talk about feeling hopeless. She was truthful but where do I go from here. I have a husband who is getting very taxed with me. My son who is 18 who is so sweet but says mom just go lay down. My daughter who is back home from the service she 26 says. Get up mom keep going….U will get better if you keep moving….We hate some things people say to us because they just don’t understand our pain . Physical and mental. But I also see if we push them away as well if we don’t at least listen to what they say. It’s all about how we handle ourselves. I myself want to stop pushing people away. Are future if u see could be quite lonely by ourselves in our pain and not allowing hopeople into self talk I feel leads us down the wrong road. As much pain I endor I will always be hopeful that maybe I may not ever be myself again, but I can just maybe get better then this.
Wow. This letter says it so succinctly. It should be in every single doctor’s office. It should be a part of the education of every single physician. There is no need to tell “my story” here…my story isn’t important. All of us here in this thread share in the same story…the life of chronic pain. The writer of this letter should receive his or her own “Noble Prize.” Not NobEL, but NobLE, for being noble in the face of the unending pain we are all facing. So to the author, thank you for the letter. To all of you who are living with your own unending challenges, I wish a solution to your pain and a peace in your lives.
Wow this perfectly describes me and wish more people would understand what we go through. I have been diagnosed with fibromyalgia osteoarthritis and some herniated disc in my neck. My quality of life has really turned to the worst. Been on tramadol and then hydrocodone the last two years of my life. The past 3 weeks got off from them and trying to find a pain management has been hell. Being a single mom trying to raise my kids being a waitress has been a real struggle with a little to no support system. I have been on 10 different meds since I stopped the pain meds Oct 5th. Now my doctor put me back on tramadol which made me extremely sick at work today. Now my boss took all my shifts away for the next week. I just pray to God that one day this will get better. I understand people with pain and wish more people in my life would understand. It’s so nice to have compassion love and understanding especially from your love one’s. If anyone reads this I understand your pain and never lose faith in God it’s a struggle but I know it gets better when I cry out to him for mercy. Keep smiling and keep the faith? Go Cubs go!
Well ,I guess its my turn;I’m 54 year old male that lived 45 years of life on this planet pretty much free from all pain and sicknesses,however in 2007 ,I had a bad accident which landed me in trauma center for 27 days and nights.
Busted pelvis,busted knee cap ,two broke wrist,and a broke collar bone,life, as I had known it had changed forever.I actually fully recovered for a few years,and thought things where going to be normal again,but boy was I wrong.I had been put on a pain patch ,which is called butrans20 mm,and it was doing a good job ,believe it or not.I really didn’t know how good it was until our wonderful insurance took it away from me ,for no reason,at all.They run around $700:00 a month ,so they didn’t want to pay for them I guess.It’s been going on 3 years now and I have been in some kind of pain ever since they took me off the patch.I now go to a place which is called pain management,and Iv been giving 3 hydrocodones,per day,which is allowing me to get by,but I was made take a 3 or 4 crazy test,to see if I was a drug addict before I could get them.Iv been through all kinds of so called pain pills that don’t work,for everyone.
For all out there reading this that think ,CHRONIC PAIN,is real I just pray you never have,t to experience it personally,because in reality that’s the only way one really knows for sure its real.
I have pretty much abandon all the people in my life because of it.I don’t go to Christmas parties,thanksgiving parties,and things like that anymore.I don’t want people asking me well I are you doing because the answer I always the same are even worse,so I try to avoid people as much as possible.
I am a Christian not just a Christian but a faithful Christian,im a deacon where I attend worship services.I have to make myself go to services most of the time now,and I truly love ❤ God and the church more than life itself.
I don’t expect other people to understand my pain problem because I realize that it would be impossible for them to do so ,unless the pain was giving unto them.I also am not looking for sympathy,for thats not who im about.
I would just like for those who are in good health to stop and think for a moment why anyone in their right mind would go on day after day after,saying they have pains ,whenever,they really did,nt?I know and understand very well that some people use the system to get drugs,and government helps ,to live ,and not have’t to work ,however they are usually very easy to identify.
CHRONIC PAIN ,is a pain are pains that constantly hurts a person ,day in ,and day out ,and I personally experience it ever day of my life ,if it wasn’t for the 3hydrocodone, I have been blessed with I would be pretty much bed ridden most of the time.
I’m learning to accept that pain is more than likely going to be part of my life from now on ,and there’s not much I can do about it.Im never giving up on God ,no matter if he heals me or not.Im willing to kept my faith untill the end.If you know anything about the Bible you probably know about a man named (Job),he went through alot more than I probably will ever come close to going through,and in the end ,was well blessed for doing so.
I just want to let all people of the earth to know that Chronic Pain ,is very ,very real for people that have it ,and for those of us that do have it Ill keep up the faith ,and keep praying ? somehow ,and in someway God will help us to ease the pains or to total eliminate them,would be so much better.
. In Jesus Name
. Amen
.
Reading this letter made me cry. I have MS and IBS. I have laundry list of symptoms and ailments from it but the pain and fatigue are what makes me wish I would fall asleep and never wake. It makes me wish I could end my life but I can’t because I do not have what it takes to go through it. My gf left me when I was diagnosed citing with brutal honesty that she didn’t want to stay with me and watch me break down. It sounds cold but I appreciated her honesty and understood her reason. Better that than just going out a fucking someone else and force me to be done with her. Since then I have no one. My friends do not seem able to understand and say things like, come on man, you look ok or you can get over it and my family say the same. So I pushed them away. My mom tells me I have not gotten better because I haven’t gone to church or prayed to god enough. This makes me want to die even more.
So other than an old dog, I am completely alone. I have struggled to stay working and my performance and attendance are starting to be held against me. I have fought hard to stay working and that is slipping away. If i can’t work i will lose my house and everything. Then? I wished knowing that I’m not alone made me feel better but it does the opposite. It only adds to the hopelessness. What my mother does not know is that I do pray every day. I pray for death or terminal illness.
God bless you for writing this. As I read it just now, I felt you knew my thoughts and was expressing each and everyone so exactly and clearly. EVERYONE!!!
In fact, the only reason I came across this letter is that I went on the Internet and typed in “I have given up on finding relief for my pains”, or something to that effect. I told my daughter right away I wish she would read it because I want her to understand her grumpy, suffering Mommy. I want everybody who knows me to read it, especially those who don’t seem to believe or understand me when I tell them there are things I cannot do.
I so love this letter!!!
Don’t you hate when people say oh iv’e got that or iv’e had that like we are just to weak to take the pain and we bung it on.
Want to be treated as less than person, then go get some severe injuries that will cause Severe Chronic Pain! You’ll experience it real quick, be kicked in the teeth, stabbed in the back, and treated less than a person.
Less than 2 weeks from 37 years ago and the Medical world still treats me like I deserve to suffer! Already been there for over ten years suffering with daily constant Pain! Had to go through daily Hell for over ten years, just to finally get help for Pain!
My severe spinal injury at the top of my neck not exactly in place, severe head injury not conscious for a month and far from up to par, and multiple head and upper body injuries, all caused by an illegally drunk 18- wheeler truck driver who caused a head on collision (killed my two friends).
I’m once again being treated like it’s all in my head, as if I’m NOT even a person, right here in the good ole U.S.A.!
25 years using Morphine with NOT ONE PROBLEM!
And now they just start taking it away from me, for nothing I’ve done wrong! My life was ruined, it has sucked, I’ve done all the work and suffering for peanuts from the wrong doer who caused this, and I still get screwed for other people’s wrong criminal behavior, their wrongs, NOTHING TO DO WITH ME! I get NO jury, NO judge, NO defense, NO court case to defend myself. Just sentenced to suffer once again with C1-C2 fusion Pain!
I’m done being treated like this!
Frig this whole system, except the 3 Doctors that helped me, but must have come to my present Doctor recently one day, and must of held a Gun to the Doctors head with threats, instruction for how to screw me, and told to just screw me or else! They, those who are doing this- they can go to Hell! They’re Evil!
They’re an Insult to my intelligence!
My life just taken away, that took over a decade in Hell just to finally get help, treated properly, and to have some what of a life. But they’ve taken it!
I’m back to suffering in Pain, and it hasn’t even got to where it will do what it once did- where I was starting to lose my mind- and I’m not at all 18 to 30 years old anymore. I won’t be able to take this. They’re crazy, and like I said- Evil!
Maine State Government- here we go again, out to do us all in! Just like communist, but least the communist said they were communist, and didn’t fake it and pretend to be something else!
Wow! Just found this site while searching for any new treatment options. A weekly ritual since 1995. I was first injured in April of “95”, when I blew out a disc in my lower back at work. Injections, traction, and PT followed. Supposed to be returning to work on Monday 7/17/95. The Friday prior while driving eastbound a kid going westbound turned into my path and I broadsided her. She claimed she never saw me in broad daylight. Blew out disc’s L-3 thru S-1 as my car stopped but my body didn’t. I’m glad (most of the time) I was wearing my seatbelt. I’d of been dead. Anyhow, it was difficult to find any Dr. to treat me. Nobody wanted the nightmare of dealing with workmans comp, auto ins., and private ins. hell I had to endure. Out of work, no money coming in and January of “94” a larger house, larger mortgage (due to larger family, 2nd child born 4/93). Lotsa stress! Took a year and a half to find an orthopedic surgeon to take on the mess. The 4 hour surgery turned into 6 and the back brace turned into a 60 lb cast. It lasted 9 months then the scar tissue built up. Now the surgeon who had described me as ” An intelligent, well-mannered gentleman” was describing me as “An angry abusive person”. He told me he would not turn me into a drug addict, he could cut out the scar tissue but, it could come back 10 fold. Yeah, I was angry! He had promised he could help me until he couldn’t. Then he told me I was on my own. It took about another year before I found an angel that would deal with the insurance hell I was in. A pain management specialist. About 8 years later while at a family reunion weekend in the Pocono’s that wasn’t handicapped compliant, the management noticed my cane. They told me to cut through the kitchen when going to dinner (instead of going up a flight of steps, down a hall, and down another flight of steps). After dinner, I cut through the kitchen, someone had dropped the salads in there, cleaned up the greens but not the salad oil. Next thing I know I’m waking up on the floor. I requested an ambulance and was told the only one on the mountain was “busy”. My wife drove me over an hour to the ER. The x-rays were inconclusive because of swelling. 6 weeks later I got x-rays redone and was told to go directly to the ER. I was walking around with 2 fractured vertebrae in my neck. Needless to say my pain management angel (who I had been seeing non-stop) increased my opioids. I’ve been on everything from morphine to fentanyl to every kind of oxy product. I’ve “controlled” my pain. Its never gone, just controlled. All my friends are gone. They do that when you can’t go do things with them or you constantly cancel plans. I always get invited to family get togethers but it’s usually my wife and kids that go. Anyway, lately my angel is getting concerned about her license. I’ve never OD’d, never abused and for the most part never had reactions to my meds. Now with all these people abusing opioids the CDC has decided to get involved in something they have no clue about. Up until 6 months ago I was on 200mg a day of opioids in some form or another taking 10 to 12 pills a day. I’m now down to 5 or 6 pills and 100mg a day. The pain is insane!!! My “angel” wants me down to 60 mg a day. That’s the CDC’s recommendation. I believe that that’s what has been instituted in Mass. so my Dr. wants to “get ahead of this” before it becomes law in my state. My Dr. that has been trying to sell the practice for over a year is now more concerned about her health than mine! Gotta love America where we screw the ones that follow the law because of the ones that don’t.
If only I could get my family to read and understand that letter…it is well written and pretty much sums up my life. Today is a bad day and my mother came to me and asked: will I do laundry today? ….as I can hardly sit due to my pain I say probably not. An hour later she snaps at me right as my pain is becoming too much to bare I am now flat on my bed and she asks if I intend to clean anything at all today….and I am just thinking intend sure – let me just tell my back to stop hurting and cysts to stop hemorrhaging. I doubt I’ll get anything done today. Everything is uncertain. This year hasn’t started out too great….but I still hope for those rare good days when I can do a little and not have my family mad at me all of the time.
One thing I can add to this greatly written article/letter is that – at least in Germany – doctors are not trained to treat pain, they don’t understand how chronic pain feels. I am one of the “better” cases, as it has a clear physical cause for me, but I would need some strong painkillers in the situations that get really bad. But because I have those situations usually at night or morning (from after waking up to when my chronic wound is freshly re-bound), and then also not always, people think I am fine. I put up a smile, I try to avoid confrontation, but the doctor I am with won’t give me anything better than weak opiates. I will visit a new doctor soon, hopefully he understands it better, but if you have chronic pain then at least “normal” doctors don’t understand pain as well, and it is hard to find a specialized pain doctor. And it is made worse by German drug laws. If I would have easy access to marijuana or opium or morphine or whatever there is, I could try that, see if it helps. But the doctor won’t prescribe it, the government won’t stop outlawing it, in the end only a specialized doctor or someone who otherwise understands chronic pain is the only relief.
And to me, even having to have a doctor in the first place is torture. I know how my wound needs to be treated, and I can take recommendations from specialized wound treatment people, but I still must get a prescription on stuff from a doctor instead of from the wound specialist or just being able to get stuff myself (in fact, I DO get stuff for myself, because the binding service does not treat the wound right, often leaving small parts without treatment which hurts like hell).
Must stop now, getting a visitor.
Ok, so where I was.
So there are days when I want to play for example some video game, but I must stop after maybe half an hour or an hour. On another day or even the same evening I can play for hours straight.
Also, noise is a huge bother. It causes me pain, but I can’t describe it. Maybe it is physical pain, maybe not. But it is only certain sounds. Loud noise is annoying to me, but only if it is something that resonates (for lack of a better word) or goes on a high frequency, such as a drill or a vacuum cleaner it causes the pain. There is a church nearby and when the bells ring usually it is just annoying, but not causing pain. That is, unless I have pain already, then it intensifies it a bit.
Now, according to Elaine Aron’s work, I’m also a highly sensitive person, so I’m not sure if the pain comes from that or from the chronic pain, but I remember always having hated that kind of loud noises, or loud noises in general.
In any case that is a point where I agree with what you write: Noise is horrible for someone with chronic pain.
I am not nearly as ill (apologies if this is the wrong word) as you sound in the post, but I find myself often just wanting it to end. I don’t think I’m that depressive anymore, but that wish to escape from pain, even if it is by death (what you call secondary depression) was strong enough to contact Swiss clinics for it – without any result. I’m ambiguous on this – on one hand I would wish to die, but on the other hand I cling to every straw of hope to survive, to every tiny chance that things can become better. I am much overweight and look to have an operation this year on the stomach – if doctors hopefully agree. If I lose weight, I might finally be able to have my wounds close.
Funnily enough, the hunger that lead to the overweight was also caused by a still commonly used psycho-medicine that I got as a child. I can’t tell the name as it might get you into legal trouble otherwise, but I can tell that there are some threads on the internet where people make connections between that “medicine” their children gaining weight rapidly – even after the “medicine” is stopped. For me, I was always rather too thin, but afterwards I gained weight like crazy, even after stopping the medicine (which my mother did, disregarding the doctor’s advice). So if I can add this warning:
Please, if you are a parent of a child, do NOT give it psychopharmaceutical medicine, even if the doctors suggest it! And if you do, please inform yourself BEFORE you give it to your children. Google for it what it can cause. Google if it can cause permanent damage, even if that damage is not listed in its description.
So, I try to cope with it all as far as I can, I know how it feels, and – interestingly enough – I met a girl online who is also in chronic pain from another horrible condition. Somehow, since I think we can understand each other, I’ll try to date her (she agreed) when the time is right. For now, and the next year, this is the straw I hang onto. Just having someone understanding can mean the world when you’re in pain.
Sorry for having had to split this into two parts and for the medicine warning at the end, but I feel that this is an important part to tell as well.
This letter is extremely insightful and very well written. I applaud you for it. I have chronic pain from unusual muscle spasms which occurred after an accident and the doctors don’t understand what the cause is. I do have herniated thoracic discs but there is no guarantee that is the cause of the spasms. Chronic pain is difficult but it is refreshing to see such an awesome letter that describes my feelings.
I’ve had rheumatoid arthritis for 13 years. I’m unable to work, I’m losing my hearing, my lungs are affected, I’m in continual pain, and I have trouble getting around in my own house. However, I find joy in my life. I make myself get up each day, get ready, put on make up and fix my hair. I keep in touch with friends. My family visits nearly daily and I have a great relationship with my husband. I maintain a positive attitude because sometimes that’s absolutely all you can do to stay properly connected with the world. Life wouldn’t be worth living if I were one of those angry people with a chip on my shoulder. The type who constantly tells others all of their problems always seem to have even more problems because of their negativity.
There are people on here who are reaching out with love only be “told off.” I know from meeting people in the waiting area of my rheumatologist’s office miserable people like this–you can just feel their anger and pain and it makes you want to avoid them. I like people and certainly didn’t want to be avoided! Those of you who are lonely, may be unintentionally driving others crazy with your complaints and bad attitude.
My pain is a constant , but that’s a given and it’s no one else’s fault. Reach out and don’t begin with your “pain story.” Ask someone how they are, smile and show kindness to doctors, nurses, and anyone you’re around. People will begin to tell you the you “make their day,” and you’ll begin to feel more connected to the world and less negative. It might feel a bit like you’re faking it at first, but the positive response you get from others is worth it. I’d rather have people like me and want to be around me than to suffer alone. Chronic pain doesn’t give me an automatic excuse to be rude or mean to others and it certainly isn’t my only identifier. I’m a wife, mom, Nana, sister, and friend. I’d rather be thought of as all of those things than as a pain in the butt person who complains all of the time.
I have EDS and this letter articulates what I can never seem to. Thank you for sharing this. I wish you relief.
People with Fibro, you have asked that we understand and at the same time said we can’t understand unless we have chronic pain ourselves. Okay. You have asked that we just be a friend. Okay. Be very clear when you say that though, what you want is people without chronic pain to take at times abuse because you do not have the ability to feel anything else at the moment because of your pain. Okay. Be very careful when you are judging well meaning people without chronic pain, after all you don’t want to be judged by a life with chronic pain. So far I have heard all the things a person can’t do right by someone with chronic pain. Okay. Try to understand how helpless and useless we are to you as your family, friend or partner. Okay.
Dear Loki,
I guess what we (one in pain) need to explain here is what we would like from the ones that are not in pain since it is not possible for anyone not in pain to understand what pain will do to a person. It changes us.
Do not ask how you can help, just help. When you ask we only feel like we’re trouble to you.
Give us a bit of extra time to get something done and be impressed by what we do, not impatient for what we can’t.
I read on a site: “Blessed are you, who asked for my help, for my greatest need is to be needed. Blessed are you, who never bid me to “hurry up” or take my tasks from me and do them for me, for often I need time rather than help.” However, there are times we need help, but don’t ask if we do. Just be there to help. It isn’t easy either way for anyone dealing with pain or a person in pain. But it all makes me want to “get out of this” so that the people I care about don’t have to deal with it and can live their healthy life happily without guilt.
Just wanted to compliment you on a great letter. I often come back to it (and the comments) when things get overwhelming. Love to all going through this and those who really do care about them (as in really care and visit them on regular basis, not people who pretend to but haven’t visited you in years).
G’day,
Spine & Pancreatitis, 23 years and getting worse. Severe pain, surgery, intensive care, ketamine, and every thing else.
I am going to share this letter with family and friends, thank you for a useful tool in helping to explain things to others. Sadly the spoken language cannot fully breach the barrier that exists for chronic pain sufferers. My wife has done a great job considering my condition yet pain is a lonely place to be.
I am a farmer and my farm shows the physical consequences of my pain, I have always been a very hard worker and am not handling the concept of surrender well at all.
My parents are justifiably concerned about using constant painkillers and sleeping tablets, they advise regularly on the dangers, but the alternative is much worse.
I regularly stay awake for 3 or 4 days if I don’t take sleepers. About 5 to 10 hrs sleep per week. During hay season once I drove the tractor non stop for 54 hrs and couldn’t walk when I finally got out. SO-I take sleepers. (and listen to friends when they tell me not to ignore the pain). Ignoring pain is a delusion, (frustration, anger) it makes you do stupid things, doesn’t work. Can’t drive the tractor much anymore, kids do that now.
I also write ( https://irelandcalls.com/banshees-lament.html ) and have written an epic fantasy novel, hopefully published soon, the relevance here being I can sometimes take my meds and escape into another world, a world I created where I can live for a time, this is my only escape, slowly eroding, along with my memory and focus.
In the real life 🙁 I am looking for others that I can talk to, share with, others who know.
NW Tasmania
Fineen
Thank you again for a constructive letter.
Hope I haven’t rambled too much.
For some reason I am not sure it is making me feel better to know I am not alone in this pain and suffering. I don’t want anyone to live this life I am struggling through. I’m not sure I can take much more. I do write as well. I hope your writings move people and connect them.
My wife has suffered from chronic pain for 2 years. It hurts me so much to see her in pain. She is young (27). I do everything I can to help and keep her spirits up. Some times it gets to me. Tonight is one of those nights. She is so brave. We will try a nerve block and I pray it helps.
I understand where it comes from, however, it is very difficult to hear her talk about death. Although I understand, it rips me apart. Sorry for my selfishness.
This letter is spot on.
Today, imagine, I was told to suck it up and stop feeling sorry for myself.
The lonely road of chronic pain just keeps going and going…
MJ, I tried Weed in several forms, edible, vaped, smoked & topical. It did not help my pain and made it worse in some cases. I also tried TCM, Acupuncture, Chiropractors, several tricyclics, Acupressure, Yoga, Meditation, Chinese herbs, NSAIDS, antiepileptic meds, GABA meds, Analgesics, Acetaminophen, Benzos etc. Unfortunately, I cannot take Opiods or Narcotics as they aggravate my condition. I have Gastroparesis which is Stomach Paralysis and anything that is ingested orally even water at times can cause horrible stomach pain. In addition, most medications applied intravenously or even topically do not help the pain and this includes vaping and smoking week!! Frequent stays in the hospital for dehydration are common for me. People need to stop being so ignorant and try being compassionate!! If you think you have the answer…think again!! 99% of us have already tried it and it has failed. So stop playing doctor!!
I’m with you. I have tried everything and am just plain tired of the nonsense. My life will not be turning around and I am scared, agitated, angry, tired and just want a moment of freedom.
Yes I feel your pain and deal with the same issues. I have a spinal cord injury in my cervical spine, I can walk and do most things I used to but am always in severe pain, As I get older it seems to get harder and harder to cope day to day, hour to hour, wishing that I could have at least some quality of life, And I also get tired of explaining the same things almost everyday to people, I feel like I need a recording to just hit play in the beginning of each day But then they always turn what I say into something else or that my problem is caused by something other than my injury and everyone always thinks that they know what is best for me. It is very exhausting and makes life much more frustrating, I always wish that I had someone to talk to that really understands, because it seems that no one gets it or wants to here it, not that I complain constantly its just the explaining everyday
Could have written this myself. I’m just so tired of living this way. I want my life back. I know it is over.. well the life I had is over. Now I live like this. Trapped in my own personal hell.