Discussions By Condition: I cannot get a diagnosis.

23 year old in desperate need of help, ongoing nerve/pain issues throughout body

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: scriabinsez
  • April 19, 2012
  • 07:30 PM

This is a long post, but theres a lot of stuff to cover. I have never heard of anybody with as unique a set of symptoms as this, and the sheer nature and longevity of these symptoms is baffling. Any time i have ever been tested or x-rayed, everything has shown up normal. Keep in mind that as you read through the different pains occurring at different stages in my life, that I only list them because I suspect they are being caused by the same thing.

For the past 6 years or so, rarely has there been a time when i didn't have some kind of chronic pain involving nerves presumably misfiring. It started in high school with mainly the hands and forearms. i was practicing a LOT of piano and playing computer games in the mean time. one day my forearms started getting this painful "pulling" sensation, as if they were wound extra tight. then the hands began to do strange things such as randomly tingle, burn, and nearly fall asleep in particular places. the palm of my hand would suddenly feel almost exactly as if somebody scratched the **** out of it (any ideas what that could be?) . Then really crazy stuff started happening: ears would start burning and turning red, neck would ache and feel like it was sunburned. This went on for several years, with no hope in sight. The doctors diagnosed me with a number of "possible" conditions, such as tendonitis, carpal tunnel, thoracic outlet syndrome, and myofascial syndrome. None of these diagnosis(es?) in my opinion could truly encapsulate the range of the symptoms. Finally, after I moved out of the house into a dorm, and completely laid off the piano and computer, virtually all the symptoms subsided. that is, unless I tried to start doing the same repetitive motions again, and to the same extent. I could never play computer games for very long without symptoms slowly creeping back in. So for a while, i attributed the remission to me laying off the repetitive motions, and the hands and arms etc. stayed in check.

one day my jaw began to bother me. it would also feel like it was being "pulled" a lot of the time. i would constantly have to shift it back and forth for relief, and it would make a clicking sound when i did. Doctor said i had TMJ, and i just shrugged it off and tried to make the best of it. It came and went, just as my other pain symptoms from the past did, and it wasn't nearly as painful or debilitating as the previous arm/hand pain had been.

last year, i started experiencing pain in my lower back. the pain would come and go constantly, and often would be accompanied by feelings of constant urgency to urinate, as well as pain in my bladder region. Again i was faced with a chronic condition that could neither be properly diagnosed (prostatitis, yeah right) nor treated. Miraculously however, once again when i moved out of my parent's home for the second time and lived afar, in the constant company of friends and busy activity, it seemed to miraculously vanish for good. Again i was stumped, but not willing to bog myself down in something that was by now completely over my head.

fast forward to now. Since living at home again, got back on adderall (incidentally i was on this stuff in high school, when everything started) which remotivated me to practice piano, since it is my college major and the path i wish to pursue for the rest of my life. I started surfing the internet more. well after about 2 weeks of everything running smooth, the pain in the arms and hands returned with a VENGEANCE. And now over the past couple weeks, the previous pains in the rest of my body have accompanied it. This almost forces me to suspect that all these seemingly unrelated pains ( the "tmj", the "prostatitis," and the "carpal tunnel") are all being caused by one and the same thing. I just can't imagine what. Of course, one could blame it on adderall revving up my nervous system, but I really doubt that it's the main cause, just merely a catalyst for it. plus i wasn't on adderall for the majority of the time in this saga.

heres a list of some of the condition's more unusual "features"

- all these pains, as stated before, come and go at random. Of course, if i were to play a Chopin etude on the piano right now it would be more likely to cause a spike, but even at rest the sensations are prone to surfacing.

- there seems to be a sort of balance going on in the way pain is distributed. for instance, rarely do both arms and hands hurt/burn/tingle/prickle at the same time. it's usually one or the other, back and forth. like-wise, when my lower back begins hurting, the pain in arms tends to subside. never do all 3 areas hurt in equal amounts at the same time.

- the sensations lately have extended into unusual regions, such as slight little burns going down my toes and even the skin of my face feeling, once again, "pulled on".

- there has always been one quick fix for the pain (particularly arms and hands), and that is alcohol. Now we all know that alcohol tends to "numb" us and kill certain pains pretty efficiently, but there is a difference, in my opinion, between drugs altering our perception of pain and what happens to me, which is complete eradication of the sensation altogether. When i am even partially intoxicated, i can carry out my activities of piano practice and computer time completely pain-free. Perhaps theres a type of nerve pill i could take instead?

- conversely, i have had to give up smoking marijuana lately because ( and this is only when the pain area is already activated somewhat) it actually makes the symptoms FAR worse. I have conducted many a search on links between marijuana and nerve problems, and have only found research indicating that it should make these problems better, not worse. Could there possibly be a psychosomatic nature to all this?

Hope you enjoyed reading. At this point, i'm desperate for any information, whether it be some enlightening idea as to the nature of this pain, a form of alternative treatment I haven't yet fathomed, or just some practical advice. I am so sick of living the majority of my life in pain. And at such a young age :/

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