I had a spinal block done 8 years ago and the doctor ended up having to stick me 5 timet. It was horrible. He hit a nerve 3 times and made my leg jerk. I wasn’t moving I was to afraid to. He yells at me telling me to stay still. I’m scared, crying, and they refused to let my husband in to help keep me calm. It was the worst experience ever. Ever since I have been having really bad back pain and sometimes when I’m standing or walking i get a sharp pain shoot up my spine. It’s so bad that it sometimes takes me to my knees. It feels like someone is stabbing me. Does anyone know what is going on? I just got insurance so I can see a doctor. Any advice?
I suppose a small part of this is a cry for help. but mainly I want some record of my existence beyond what is happening if you know what I mean. I want some people out there somewhere to have really heard me and know why.
Starting about 4 years ago I was having severe lower back pain. Back then I thought that was so bad….little did I know.
From there over the next four years my right hip severe to excruciating pain daily….I hurt from my neck bone all the way down my spine to my tailbone. my shoulders hurt, my fingers hurt I’m just going to stop although there is more because it gets ridiculous obviously.
My lower intestine seemed to have stopped working about 2 years ago. I cannot eat food of any kind for about a year now. I have got pain daily from just drinking ensure to stay alive. And I have dropped a hundred pounds and not on purpose. I pretty much hurt all over and I feel so malnourished and awful all the time. I live alone and can get no actual help for some reason. I have been through the ringer with the medical profession and no one cares. that’s just the bottom line. And a little over a year ago when I was in the worst shape of my life and even worse now of course. Anyway my wonderful wife decided to leave me for a police officer. I cannot eat and I cannot stand the pain anymore. and I am alone no one needs me or counts on me anymore anyway. I am 43 years old and have grown children. And frankly they don’t seem to care much about me. I’m not sure why. I always did my best and they were kept safe with a roof over their head and food to eat. This generation seems extra selfish for some reason.
A normal person, from the outside. School, friends, sports. A normal person, from the inside. Dreams, goals, aspirations. Though my secret life begins to take hold, it begins to leak to my closest friends, slowly making them not my closest friends, it begins to leak to my educators, creating a wall of superficial pity, it begins to leak to the public, showing an image that I tried so hard to keep down, to keep to myself.
An image of a angry soldier, fighting to live day in and day out. A person who gets flagged as a cripple, as a drug addict, as weak… That’s who I’ve become. A person that no one wants to talk to on a bad day, because chances are my bad day will make yours much worse, though words, through actions. That’s not who I am.
It’s arguable that the only thing worse than living with chronic pain, is having to deal with the people around you, whilst dealing with chronic pain. “Wow, blue tape today”, “oh, yellow tape, very nice”, “the green tape doesn’t suit you”, “you must be feeling better, you’re not wearing tape!”. “Have the doctors figured it out get?”, “are you sick and tired of wearing braces and tape all the time?”, “does it hurt?”, “can I touch it?”, “why weren’t you at school yesterday?”, “another doctors appointment?”, “did your doctors even go to medical school?”. “You look horrible today”, “you look better today”, “you look like you haven’t had any sleep”. “You should see my doctor”, “you should try acupuncture”, “you should see a psychiatrist”, “you should take a break”, “you should take some Panadol or Neurophen”.
“You should try harder”…
The only thing that spices up my life is seeing new doctors and wearing different coloured tape, let me and my tape be. And certainly, when I’m not wearing my tape, it does not mean I’m better, most probably worse, and was in too much pain to apply said tape. No, the doctors haven’t figured it out yet, and yes, they went to medical school, and as it happens I am seeing the best specialists in the state, so you giving your medical suggestions doesn’t help me one bit, and you bagging on my very hardworking medical professionals won’t achieve anything but make me more angry, they’re doing all they can, there is a reason it is called ‘unexplained pain’. Yes, I am sick of wearing tape and braces, and yes, I’d much rather have them off then on. Of course it bloody well hurts, what did you expect? And no, you can’t touch it. Thank you for telling me I look horrible, it’s makes me feel so much better, and you can probably assure yourself that I had the same thought and overwhelming feeling when I got out of bed that morning. Also, thank you for telling me I look better, it doesn’t, and won’t, make me feel any better, ever. And if I look like I haven’t had any sleep, that is most probably because I haven’t, because, as it turns out, it is quite hard to go to sleep when pain plagues your nights. My team of doctors is probably better than your GP ten fold. Acupuncture won’t help, nor will Bown therapy, yoga or witchcraft. My mental health is fine, I don’t need a shrink. I think I am more than qualified to know when I should take a break. Panadol or Neurophen, even both of them put together, don’t even come close to the course of pain medications that I am on. And for heaven’s sake, I am trying my hardest. I am here, at school, almost every day, other than the days I am sitting with my legs wrapped around a chair in a doctors office. Sure, it takes its toll, I get angry, I get impatient but I’m still trying to live my life. I am still a human being, and I am still able to pull my weight, the only difference between you and I, is that my weight is 50 fold heavier than yours, and I am pulling mine through ten feet of mud.
I am living, just as every other person, there is no need to segregate me into a little pen of the unwilling and broken, population of only one. I am willing and I am not broken. I am strong. I can see through the clouded vision of pain, I can push through the voices that titter at my head, I can overcome the pain, if not halt it in its tracks. Though, alone it is very hard.
I want them to see, I want them to understand. I want them to empathise. I don’t want pity, I don’t want sorrow, I don’t want a cutting of flowers and a box of chocolates with a nice card every week, all I want is for them is a shred of integrity and understanding. The line between the two seems to get so clouded, and that rarely ever gets addressed. From the outside, a person who would see me on a daily basis, but not know me, would know that I live in some sort of pain, and that I was not the most pleasant person to be around. From the inside, a person who knew me well and took their time to talk to me, would know that I struggle a lot, but I push through the pain, they know when the pain is talking, not me. Though neither of these two groups know it true…
Pain is my best friend. I’ve stopped reaching for the white flag, and have kept fighting. Everyday is like a little battle, and everyday, when I take my last set of drugs and lie in bed, a little victory is on my side. Even though this happens, everyday, I’m still losing the war. No matter the amount of little wins I gain, there’s no hope for a victorious war. I’m lost for hope. I’ve given in. Every time I used to see a new doctor, or a new specialist, I used to entertain the possibility that this one might know. And every time afterwards I was silently reminded by myself that there was a reason it was called ‘unexplained pain’. I am strong, though tiny little chips have been made every day, and I’m at breaking point. My story isn’t a glamorous one. Nor is it one that is in sights of a happy ending. I try to live in the future. For the last few years I have worked so hard at school to set myself up for the career in medicine that I have wanted for a while now. Though that sometimes seems as if it is sliding away, that it was a foolish goal, being easily stopped by the army that is pain. Will it ever go away? I’ve learnt over the years to be hard, to grow a leathery skin, so that nothing can get in, and nothing can get out. Though, this has left me with no feeling for the niceties of our society.
All I want is people to see that, to understand that.
I don’t think life is meant to be a losing war, but I guess some manage to pick up the broken army.
I am 21. I am young. I played soccer for my university, and I was a highly competitive cheerleader. I was a jock. I played every sport. I won races, and competitions. I have jackets, and trophies filling my closet and basement. I was happy.
Then slowly, pain crept in. It took over. It ruined relationships. It scared me. Treatments, and surgeries took over my planner. Nothing worked. I have tried everything. I have travelled to different countries looking for help. I have accepted that this pain will last forever.
Lately things have been very bad. The pain has made it hard to concentrate. Pain meds don’t relieve the pain, and I can barely concentrate. I feel like I’m living in hell. I feel alone. I feel depressed. I need help, because I don’t know how to do this. I don’t know how to live like this. I want to be happy. I want to learn.
I feel like a burden to my family, friends, and boyfriend. I text them constantly and I seem clingy. I am home alone though while they are out. They are the things that make my bad days slightly bare able. Please help. Please give me hope. Please give me kind words. I don’t know how long I can live like this.
I would like to start by saying that I cried when I read “Letter to People without Chronic Pain“. I was diagnosed with 3 herniated discs in my neck, multiple bone spurs and degenerative bone disease. I had been working for years with neck damage and had no idea! Neck pain had become a part of my life and considering that I was in my mid to late 30’s I knew I was no longer a spring chicken. So until the morning of August 17, 2012 I thought that I was healthy as a horse.
August 17, 2012 at 5:00am started out like any other day. I got up started my coffee and proceeded to take a shower and get ready for work. By the time I got out of the shower the pain was so severe that I laid down on the couch and to my absolute fear I could not move! I also was having trouble breathing mainly because every time I tried to take a breath it felt like a vise was around my ribs and chest! I could not breath, I had no idea what was wrong with me.
When my doctor came into the room after I had an MRI, my jaw dropped as did my doctor to be honest. She stood there with one hand on her hip and told me that I have 3 herniated discs, multiple bone spurs and degenerative bone disease. I thought ” how in the world does this happen to some one who has never even been in ANY kind of accident! Her only explanation was the degenerative bone disease mixed with the type of physical labor work that I have always done ( and some weight lifting in the past ) had created this problem.
I went to a specialist was told surgery was not an option because no doctor where we live would touch me because of where the discs are and how they are herniated. So I went through physical therapy and home traction, which did help for a little while. After my case went from a short term to a long term disability case my employer with the state terminated my position and I lost my insurance. When that occurred I was no longer able to go to the doctor as needed and I lost my long term disabililty and my disability advocates. I have since tried to go back to work, but I am unable to do the same type of physical labor work that I used to do. Since trying to work I have noticed new symptoms. Some times I think that my husband thinks that I am full of it, and some times even rolls his eyes when I mention pain. But he has NO idea how bad my pain is! It is not just Physical pain but now has become Emotional pain as well.
Until this happened to me I worked took care of my kids, and now I can not hold a job! People look at me like I am full of it, like I am trying to ride the system! That could not be further from the truth! I want my life back, I do not want to be in pain literally 24/7! I want to sleep at night, ALL NIGHT and not wake up 4 times a night because an arm or a leg has gone numb or because I had my head in a wrong position for to long and a sharp pain wakes me up!! I am trying to get some financial assistance as a hospital near where I live but it is taking forever. I am even trying to get help from state and they are questioning why I have quit 2 jobs. I do not have an advocate or medical prof anymore of my condition because I have lost it all. All I do when I am by my self is cry, I want the pain to end, I want to stop feeling like people are judging me and talking about me like I am this drain on society! I do not know how much more I can take! Even my concentration is suffering, I feel like I am going CRAZY, I WANNA DISAPPEAR!!!!!
I have seen numerous Urologists , Renal Physicans , Pain Specialists . Iv tried many pain reliefs . Im in pain 24/7 . Every urine test for the past six years has had blood in it , microscopic or visable . I have bad bouts , or ‘attacks’ as i call them , not so often anymore . every two months or so , it was weekly at one stage and i spend weeks in and out of hospital on I.V morphine . I have had a stent put in , a camrea put into my kidney my urologist saw my kidney was bleeding inside . He said he would try to laser it , but it was bleeding from so many different spots that if he tried he would just damage the kidney . My kidney function is fine , and other than low iron levels occasionally im pretty healthy .
LPHS has had a massive impact on my life . I left school at 15 , to study from home . I lost the majority of my friends , if it wasn’t for my boyfriend and family i would have been miserable . My Mum has been there for me , takes me to all my doctors visits . She brought a house just over a year ago with a flat underneath it for my boyfriend – Devin & I to live it . Its great to have our own space , but the comfort of having Mum upstairs if I need her . Iv been with Devin for five years in July , friends say we are like an old married couple and im happy with that . Hes my strength when i have none , hes my best friend and such a blessing to have . It hasn’t been easy for him either , its not nice having a girlfriend who is in and out of hospital , drugged up & always in pain .
Another love of my life is my puppy . his name is Bailey and hes a chihuahua pappilon cross . hes a little over a year old . he sleeps in bed with me , keeps me company when im up late at night.
I’m at a loss as what to do . I’m tired of this, I spend most of the time at home . I dont work and rarely see my friends. As awful as it sounds I do find some comfort in emailing people who know what its like . If you would like to email me its , [email protected] .
Hope you are all having a painfree day / night .
I am a 34 year old married mum of 3 children. I have suffered depression and pain for as long as i can remember. About six months ago i was finally diagnosed with fibromyalgia. I honestly wish i still didnt have a name to put to my condition. It’s like i’ve hit a brick wall i know what is wrong with me but none of my health workers can give me any advice on how to manage.
I have gone from being reasonably happy most of the time to a wreck. I have to admit my symptoms have gone far worse than they ever were in the last 12 months or so. i seem to be having some sort of flare up. Some days i cant even manage to put my own t the shoes on without a great effort. And running around after my 2 year old is almost impossible.
I feel so low at the moment i sometimes think i cant go on. Even the usual thoughts of what it would do to my family are not enough to make me feel i am being silly. I feel i have gone from being a mum and wife, and become a burden on everyone.
No one seems to understand me and i think everyone is getting fed up of hearing me say i dont feel well or i am tired. What i am going to do is beyond me i feel so tired of everything and worthless.
Usually i am the one cheering everyone and absorbing everyones problems. I feel guilty for writing this even as if you were not depressed before reading you will be after. So as usual i apologise for being me. xxx