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Spinal Cord Disorders Message Board

Spinal Cord Disorders Board Index

Feelbad, I'd especially appreciate your wisdom, if you have the time.

I've had problems in my back since I was 18, I'm now 28. I have mentioned it on healthboards before, but I have not posted about it specifically because I've taken it for granted for so long. I apologize for the length, but I want to provide all relevant information.

My symptoms are, briefly:

Aching pain throughout the upper back/shoulders, focused sharply between the shoulder blades. Painful trigger points all around both shoulder blades, especially the right one.

Every time I roll my shoulders, they make crunching noises. It's not a normal joint pop, if I roll them 10 times in a row, they will crunch every time.

When they get especially tight, I get symptoms down my arms. Pain in random places, like the elbow, or the last joint of the middle finger. Sometimes it's all 3 of the first fingers, or all 3 of the last (I'm familiar enough with nerve maps to know why it's 3 fingers at a time.) Sometimes part of my hand goes tingly or numb. Sometimes one hand goes ice-cold and pale, or gets puffy (not swollen as such, just too much fluid). Once in a blue moon it gets so bad I start dropping things unexpectedly.

I also have pain in the small of the back, just on each side of the spine (better since the trigger point injections last month.)

I've had nerve EMG on my arms, x-rays of my hands, neck and lumbar spine, neck MRI, and blood tests to rule out inflammatory arthritis, lyme or autoimmune disease. The only thing they found was that my neck lacks curvature, presumably due to muscle spasms.

I was eventually diagnosed with fibromyalgia, but since then several doctors have said I probably don't have fibro, because my energy levels and moods are pretty good.

In recent years, I've gotten to a point where I simply accept that I don't have answers and I probably never will. I take 20 mg of nortriptyline per day, and I try to stretch a lot and maintain good posture. Sometimes I get massages.

Just recently, I started a new job and began feeling particularly bad, so I went to a physiatrist I'd seen before. She gave me some trigger point injections, helped a lot in the lower back, didn't do much for the shoulders. She also believes that, because I have nerve symptoms affecting my hands, I should look harder for an explanation.

I spent two years looking for answers. It cost money, time, and energy. I saw lots of different doctors, but none of them ever did a darned thing to make me feel any better. They just said basically, "Tests are negative, therefore you are fine, go away now." I was in considerable emotional distress during this time, just barely reaching adulthood and fearing I'd never be able to have a job, live a normal life, or do any of the things I'd dreamed about growing up.

Here's the question: I've found a measure of peace. I modify my life as little as possible to keep things under control, and the rest of the time I hardly think about it. Do I really want to open that can of worms again? But as I was describing things to the new doctor, I began to realize that, no, living with nerve pinches every day is not normal. Falling asleep in pain and waking up in pain at age 28 is unusual. I trust my current dr to accept that my pain is real regardless of what the tests show, but would it be worth the trouble to investigate all over again?

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