Never ending pain

Hi my name is Denise I’m in chronic pain constantly every minute of the day sometimes I feel my life is over I get depressed and sometimes I feel like a prisoner in my own home because I don’t go out much because of the pain when I go to the doctors they don’t give me the right kind of meds or something that isn’t strong enough I try to explain to them that the medicine doesn’t work but I believe they think I’m making this up but why would I be making this up if it relieves pain I would have no problem taking it I cry mostly every morning because I know once I get out of bed it will not be any relief I have a 22 year old daughter she’s doing the best for me but I can’t take her life from her because she is too young to be dealing with this I can see the pain in her eyes when she asked me to do things with her and I can’t do it it breaks my heart knowing I can’t share activities with other or mother daughter time shopping things like that just a little things little things – her R very big ones to me because of my pain I have no love life and I fear I’m going to be alone for the rest of my life and when I meet someone the last thing I want to tell them is about my pain fear of them walking away who wants to be burdened with someone that can’t do anything and in constantly pain I can only stand about 5 minutes with out moaning I feel like this isn’t life living this way everything I used to do its gone I have no more friends and my family isn’t close like we used to be because I can go to any events and when I force myself to go I have to leave early so people who talk about chronic pain you don’t know our lives unless you lived with this pain it’s not about being lazy or anti sociable it not comfortable and without the right kind of meds to at least get you through the day life as it was is no more I used to be a happy person now I feel like I don’t have a purpose for living anymore because day to day pain is my life so with out any proper solution for this pain I have no idea how to get through this but I love my daughter she keeps me strong but I am not strong enough to do the things I need to do with her the smallest something to get me back on my feet would make the world of difference so to cut this short when your life is riddled with pain constantly do what I do because I have no other solution I just pray to God and hope that one day i will find relief and for those in my situation or I can find the right meds that will give me an edge something’s got to be out there I’m asking for a little help not a miracle thank you for listening to my story

Fix Me!

I have been tormented with lumbar spinal problems for over 10 years now. When it first happened, I had no idea that hell could reach a new level. I was told by the first treating family doctor after an MRI revealed a bulging L4 lumbar disc that this was “normal”. Oh my God, then I suspected that I was crazy which was reinforced by the ‘medical professionals’ uncaring for me at the time. I altered my activities and gave up on answers. I tried physical therapy and discovered a special loathing for TENs. I consumed pills and suffered projectile emesis. I got thoroughly disgusted and decided to handle things on my own. I became so good at managing my pain without external help that I was assumed to be cured. Truth is, I just felt that getting help was pointless, so I suffered alone. I gave up my horse, my home, my garden, my remodeling activities. It just hurt way to much to do these things. I self medicated intensely with alcohol for several years-which was extremely bad for my body and mind. The negative effects eclipsed the short term oblivion, so I abandoned that sort of self treatment. I blessedly experienced times of almost non existent pain for several years, and became hopeful.

I tried to resume the things that I loved over these years. Then pain returned and began to morph into more awful pain when I was attending college to hopefully re train for a different sort of employment. I was horrified when I lost the ability to sit for any but brief periods of time. This began in 2011. I forced myself to continue with classes until spring of 2012. I still entertained the idea that I was simply crazy to be feeling what I was feeling. I contemplated suicide. My world crashed. And then, I got really really pissed off. I am still pissed off. Deadly pissed off. I now have sciatica that extends to both of my feet, and although I can walk, it becomes increasingly painful the more I persevere. I recently resigned from a job that I loved, after losing the battle with this morphing and increasing pain. I am clinging to another part time job that I can tolerate. I have a certain autonomy in my duties, and I can limp slowly as needed. Thank God my job does not involve sitting-which I absolutely can’t do for much longer than the length of time required for bowel elimination! That in its self is a tricky proposition. My legs tend to tingle and go numb if I linger. I have been blown off repeatedly by two different medical practices. Finally, I demanded a referral and will soon be going to a pain management clinic. This isn’t what I want at all. The symptoms that I endure suggest that I have a possibly severe disc herniation in my lumbar spine and now since I have pain in my cervical spine that shoots horridly into my arms at inopportune moments as well-most likely a cervical disc herniation. I have done years of research into the anatomy and physiology of the body in my quest for understanding and healing. I will be extremely surprised if I am proven incorrect. I hope fervently that the new doctors I see order some MRIs.

If I am proven correct, I intend to rain fire and brimstone on the doctors that did nothing for me but negate my symptoms. I don’t want to manage this with poisons, I want to be CURED. I know many people that have had surgeries for their ruptured discs and these people are now living happily and pain free. I don’t want nasty poisonous epidurals, There is the rare chance of developing arachnoiditis after these procedures, and I don’t want to descend into the 10th circle of hell. I don’t want quack remedies. I have already tried them all and am certified now to practice my own form of quackery. I did find some herbs that actually do speed up the healing of certain types of infections based on subjective trials. Can one cure a broken leg through exercise? Can one heal torn knee cartilage through exercise? No, of course not! Likewise, injured structures within the spine will not be healed through physical therapy. Been there, done that. The science is unsupportive in my case. Recall that old adage “Misery loves company”. If I find that I have structures damaged beyond repair due to delay in adequate diagnosis, I intend to do my utmost to make the “medical professionals” that refused to do that which was right suffer as much as I am suffering if at all possible.

I do what I can do, because therein may lie the antidote to madness. I started my own little business so that I might have absolute flexibility with my physical limitations. Most of the time, this has worked. Lately I find myself unable to devote the attention to this venture that I would find satisfactory. I study microbiology and have been slowly accruing the equipment for my own in house laboratory. Since my back deteriorated further, these endeavors have slowed to speed less than that of a garden slug’s progress on dry ground. I am extremely pissed off. This is a very brief account of why. I have one extremely valuable thing: The ability to think. I do believe the torment is clouding how I use my mind. I like it not at all. Some people cry when they suffer and some become berserkers. Some seek solace and others retribution. Some find a measure of grace and endure while others determine to drag more souls into their torment. I would rather not be the berserker, but alas, animals tend to bite when injured to the point of madness. My daughter sought to comfort a lizard the cat had mangled and it firmly did just that. It latched onto her finger with the last determination left in this life. I understood the poor creature completely.

Cervical Epidural

I typically don’t have problems with steroid injections but this time I have an excruciating headache that will not stop. My blood pressure is through the roof as well. I have not gotten any sleep due to my head feeling like I want to pull if off my shoulders. I have taken 2 pain pills together and it is not doing anything for the pain. Right now my pain is mostly headache but if I bend my neck the nerves that are pinched radiate pain down the back or arms and the neck is in pain as well.

I had a neck discogram on 5 levels and 3 of the disc are bad. I only went through with the epidural injection because my insurance stated that I needed to do a more conservative treatment. I have been to therapy, nerve block, chiropractors, massage therapy, you name it I have done it for my neck and lower back. I don’t understand why they will not consider chiropractic as a treatment but will pay for me to have it done. They consider Acupuncture as a treatment but do not help in paying for that treatment…seriously!

I really not overly upset just don’t get it when people need the structural part of the pain fixed to keep the pain away forever! I have had several steroid shots in knees, shoulders, low back and now the neck and have not found relief, so I am one that just wants the problem fixed. Maybe this is wrong but I will say with my first low back surgery, I was so glad to get it because I could play sports again and was without pain for years. Due to age, I have just started feeling pain again but had many good years with out pain! Well it will all work out and I wish you all the best!

Puzzled

Hi my name is Lenny im puzzled i have had cronic pain since I beat my first desiase alcoholism i stopped drinking in 2004 Thanksgiving day then found out i had a dead liver i walked in pain severe pain till 2008 then 09 wife saved me getting me a new liver amen.. I’ve been out of surgery for six years here is the puzzleing???? Getting sober is awesome but you don’t slow down and think about drinking was my pain pill for 34 years i killed my pain with buddy and Jack but I also started a new page of pain my old injuries started to appear nurothopy cronic arther three slipped dics torn ligament in left elbow finally me knee i tore that at twenty im 49 now and i just got that replaced april 14 2015 now at this point im on pain meds doctors are supposed to tell the paitiont to ween your pain meds before you get operatied on mine my doc forgot???? So imagine your leg is broke and you have no help no pain reliever thats how i felt when i woke from surgery no relief i started screaming the pain was deadly my whole bodey constricted pulling muscles in my knee all because they didn’t tell me to ween. Off my pain meds sorry im so pissed now.. well my knee is not well and im in cronic pain again i quit oxy cotin weened my self off the meds im taking tramadol and mind over matter for pain i agree shut up to for now there is know cure I quit the addiction to meds and grew some larger balls for my wife sorry gram…… finally i just want to know the writer of this page do you take anything for your suffering or recommend anything I take tramadol fifty mg does not help i want to try the patch if you and others help i would appreciate it thank for listening to hope i didnt piss any one off but this relieved some pain!!!!! God bless everyone

Chronic Pain in the Education System

They say that being a teenager is hard. And, I can attest to that, it’s been the hardest part of my very short life – and that seems consistent with those around me too. The pressure that is placed on the ones who want to achieve is excessive: grades, exams, uni applications, meeting deadlines, the lack of sleep, the excess of work to complete. The current education system places us under extreme conditions, pushes us to the breaking point, it stretches us beyond limits – and in some cases, breaks us. I see way too many of my talented and intelligent peers crumble under the expectations and pressure set to us to get a grade that is suitable to get into academic pathways such as law, or engineering, or medicine.

This is more than hard enough without constant debilitating chronic pain.

To get up in the morning and know that the day is going to be difficult is something that I feel is somewhat consistent throughout my peers, though I feel this way for a completely different reason.
I wonder if I can get out of bed and get my clothes on.
I wonder if I can eat breakfast without dropping it everywhere or feeling sick enough to regurgitate it back into the bowl.
I wonder if I can make the bus ride without having to take a stop and get a breather.
I wonder if I can sit in class and take all of the notes.
I wonder if I can pull myself away from the pain well enough to follow what the teacher is saying.
I wonder if I can sit the assessment to my full ability.
I wonder if I can make a day without having to remove myself from the classroom in an attempt to stop myself breaking.
I wonder if I can complete all of my school work that has been assigned to me for that night.
I wonder if I can make the night without the need of an ER doctor.
I wonder if I can get more than four hours sleep.

I wonder if I’ll make it.

The worst part about all of this, is that I know I can do it, and I know I can do it well – but the thing that is stopping me is my own body, the largest betrayal known to man.

You could walk past me, and you’d think I was a completely normal person, going here, and going there, though what you don’t see is the internal warfare. The constant battle between yes and no.

And the drugs specifically given to me to make me better, ofttimes do the exact opposite. Can you imagine an essay written by a brain clouded with heavy opioids? (Spoilers: it’s not pretty, as my literature teacher knows all too well). And the judgement that goes along with the drugs is especially evident. You get pretty good at doing a Taylor Swift and shaking it off, but it is still always there. They don’t know what you’re taking, which is probably for the better, but when you’ve got a rather extensive regime of drugs to take at all different times during the day, you’re subject to some speculation.

Aside from the drugs, the constant questioning of just about all of my actions really begins to take a large toll. There is a fine line between curious and invasive, and that seems to get overly clouded when in the realm of chronic pain.

The pressure that is placed on students is exemplified majorly by the presence of chronic pain, and, unfortunately, that is largely misunderstood, and seems to be passed over when assessing students in their adeptness to situations. I can work at the same level as the average (when I’m functioning), but I could be working at a far superior level without the burden of chronic pain, and that is what really gets to me.

How is it that some manage to be dealt the bad hand, and are expected to win the game?

The name of my monster

I’ll try to keep this brief and would appreciate any input from people, especially those with similar symptoms who perhaps found a diagnosis somewhere down the line.

Background on me: I just turned 24, I’m a final year med student and I’m set to graduate may-june of 2016 (God Willing). I used to be pretty active, take very long walks, go kart-racing and loved any sort of vigorous activity.

About 18 months ago, I started having recurring lower back pain on exertion. Things like doing dishes, picking things up and putting them away, walking for 15-20 mins etc. It wasn’t regular pain like the sort you get from a muscle strain, it was of a very different character. It started off sharp and then tapered into a very dull gnawing ache in my lumbo-sacral region but it would be relieved by rest.

About a year ago, this pain was no longer “recurring” but rather a constant ache that I classified as either “tolerable” or “intolerable”. I had trouble doing the simplest things and i couldn’t walk or stand or even sit for too long. 6-7 months ago this was followed by tingling, numbness and heaviness of my right lower limb along with very obvious weakness.

Today, my pain is always at a level 6-7/10 on the severity scale (hence it has now become the new 1-2/10 for me since my scale doesn’t have a ‘no pain’ number), I can stand/walk about 7-8 minutes before the pain becomes severe and I get a limp within 15 minutes which becomes more and more pronounced the more i have to walk/stand. Along with this, my leg also gets numb and heavy and eventually, becomes nothing more than dead weight that I have to drag along.

Seeing as how I’m in the medical field, I diagnosed myself with having a prolapsed disc or some other sort of lumbosacral pathology with nerve impingement leading to sciatica. The pain was unrelenting so I got an LS and pelvis MRI and it showed a very mild annular tear with broad disc protrusion and some very minor degenerative changes in L5-S1. We were told by multiple doctors that we consulted that these changes were quite insignificant and didn’t at all explain my symptoms.

This last week, I went to an excellent ortho who noticed that my clinical examination signs and description of symptoms warranted another MRI, this time for brain and full spine to rule out multiple sclerosis. My sister is a doctor and I myself knew this was highly unlikely and the doctor was just being thorough by admitting me and seeking a neuro consult. The neuro also believed it was highly unlikely but wanted to rule it out anyway. I was excited because I thought that even though i was sure it wasn’t MS, this MRI would show us what it actually was and the mystery would be solved. But I wasn’t that lucky.

The MRI came back unremarkable. I should’ve been happy like my family was, but I wasn’t. The neuro told me that it was “nothing” and I knew she meant there was nothing neurological but the tone in which she said it made me think that now I had lost credulity with professionals because they couldn’t find a clear medical explanation. I often given this analogy that “if there is a monster in my house that i can’t get rid of, I’d rather know where it is at least”, which means that since i do have pain and it’s not going anywhere, I’d at least like to have a diagnosis or give a name to the monster.

It’s very hard for me to get narcotics because no one wants to give a 24 year old narcs and if I hear one more doctor tell me to take an NSAID and “not jump to heavy pain meds”, I will tear my hair out. It takes about 120mg codeine for my pain to be influenced at all. Even morphine shots don’t take the pain away entirely anymore. The last time I remember being pain-free was the first time I got a morphine shot a few months ago and those magical 40 minutes showed me what a pain-free existence was like because I had forgotten. There are people out there, majority of people actually, who live in that bliss almost everyday! and they don’t know how blessed they are!!

My previous semester at med school was awful because I had to be sent home or had to go to the er multiple times from pain exacerbation. Ward rounds became torture to me because by the second bed we’d go to, my body was done and I can’t even begin describing how difficult clinical examinations were. I was almost not allowed to give my exams because of my attendance (even though the days i missed were mostly times I was sent home by doctors because of how pathetic I looked dragging myself along, using the wall for support with pain-glazed eyes). Thankfully I gave my exams and got through the semester and now I’m on to my last one which is going to be brutal and mostly on my feet, and I have no idea how the hell to do this. I can barely shower without needing to take rest afterwards and little things like combing are now an ordeal.

I want this monster gone.

I’m a lucky one with LPHS

I wanted to write my story here, but it is super long so you will get the abbreviated version! I have had LPHS for almost 20 years. I have been to hell and back. I lost my friends and some of my family, my fiancee, and my career. If it weren’t for my parents, I probably wouldn’t be here today. I want everyone to know that there is hope, and I am proof of that.

When I was diagnosed, the treatment for LPHS was auto transplantation. With a 10% success rate, I said no thank you. I was then shuffled from pain clinic to pain clinic, because the docs said they couldn’t help me, most just looked at me like I was a drug seeker. My nephrologist was in Ohio, but I live elsewhere in the Midwest. I have taken every narcotic that you can take, not to mention all the other medications that doctors prescribed off-label. I also had many procedures (ultrasounds, CT scans, IVP’s, cystoscopies and a kidney biopsy that positively identified the LPHS). Then there was the numerous experimental procedures.

I was at my last hope of having a pain pump implanted, when my nephrologist suggested I see their pain doctor for a procedure called Pulsed Radiofrequency Ablation (PRFA). I went for the consult, and the doctor said I was a candidate for the PRFA, but not to get my hopes up. I was the sixth person with LPHS to have this done, and the results of the other five were not good. And of course being experimental, my insurance company did not pay for the PRFA. I didn’t care, I needed it done. Made a payment plan with the hospital, and had it done. My doctor said that it would be a success if it lasted 3 months and I could get off of 75% of my medications.

The PRFA lasted for 9 and a half months and I got off of 95% of my meds! I was thrilled! The good news is that the PRFA can be repeated. The bad news, is that you don’t know if it will work again. I had it repeated, and it has lasted 7 and a half years. Yes, I said YEARS! I am completely pain free in my kidney. I’m one that passes a lot of blood clots. I do have pain when the clot is moving down the ureter into the bladder and then out of my body. This is why I have to stay on a maintenance dose of morphine, to help when I pass the clots. But the dose is so small compared to what I used to take before I had the PRFA.

My life has completely changed. I now have a husband and a child. I wanted to share my story to let you know that there are options out there. When I was diagnosed almost 20 years ago, there was not many options for treatment.

I am not saying that the PRFA will work for you, but it is an option. All I know is whatever you do, do NOT give up. Keep searching, keep trying and keep your head up. Find what works for you.

You are not alone