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?
Has anyone bothered to MRI your shoulders? OA in the acromio-clavicular joints where the clavicle meets the scapula is very common and causes just about everything you listed. You develop osteophytes that press on the huge subacromial bursa and that then impinges on the rotator cuff tendons and nerves. That along with a loss of lordosis in your neck(not normal for your age) it could be causing a lot of nerve impingement. There are also various impingement disorders affecting the cervical spine and shoulder muscles.
If you haven't seen a rheumatologist, try to. They are the medical side of orthopedics and more likely to stay with you until you have an answer. If you have and have been turned away, see another. Bad docs come in all forms.
I've had 2 major cervical spine surgeries and am probably facing a third and had both shoulders operated on for AC joint impingement. They simply remove the end of the clavicle and "presto".....pain is gone. The bursitis clears up, the tendons can function and the associated tendinitis disappears and the inflammed nerves calm down. And someone needs to monitor your neck!
Actually, no, no one has really looked closely at the shoulders. (either scans or physical exam) It might be worth thinking about. I suspect the nerve impingement is at the thoracic outlet, but I don't know for sure. It could be occuring in more than one spot, also.
I have seen two rheumatologists. One was a complete waste of sheepskin who diagnosed me with fibromyalgia, then did not give me any useful information nor offer or recommend any treatments other than Celebrex. Which I turned out to be allergic to. Which he then tried to prescribe a second time. The other said "I don't treat fibromyalgia, byebye, but pay for the visit anyway."
I'm a bit soured on rheumatologists at this point. Then again, I was soured on surgeons till I found that brillant young fellow who diagnosed my ankle in 5 minutes and repaired it gorgeously.
I've now had a chance to look up some of the problems you mentioned. I don't have much pain at the front of the shoulder, so I don't think that's it. Still, thanks for the info!
Last edited by janewhite1; 04-08-2009 at 07:49 PM.
Reason: Add
i would have to agree just going thru my own rotator cuff hell in my shoulders that it would be something to really nahve much further evaluated. some of what you described "could' have to do with impingment within those shoulders too. i have had this repeated issue myself,but i also know my c spine is kind of falling apart and IS most definitely firing out angry signals withhin those shoulders too. this is what my amazing myofascial release guy told me. it just keeps regenerating itself all the time.
what i am wondering is two things really. how long ago was that c spine MRI and do you, yourself actually have a copy of that rad report? unbelievably,when any 'specialist" is giving us results, in MANY cases either the do not actually tell us everything that was even found in our own reports or they don't happen to "feel" any real prominence in a particular finding only because they don't understand that it IS a significant finding,you know what i mean? there are some NSs out there and other spoine specialists who,only because they hve never or had very little experience in any given issue, just do not give it the gravity it deserves sometimes.
i went thru this myself with my cavernoma. three seperate opinions and only the very last one who was the head of NS at the U of MN actually had had enough overall experiencve and knowledge in dealing with these in a spinal cord that i found out finally just what this thing was going to cause and that it needed to come out efore it bled again. my other two NSs never even mentioned that this had actually even bled??
if there are ANY hard findings in that summary at the very end, they do need to be a bit mote closely looked at. one other thing you also need to keep in mind here is that an MRI or any other type of actual scan will always show everything that could even be going on in there either. its just the overall way any "scan' is. it is NOT an actual picture. and from what i have learned over all my 16 MRIs and just reading other peoples stories here, not even the true overall severity of a finding will always show either. my own personal opinion on actual MRIs is that they will only give at best a "rough" idea of possible findings and not at all the true picture of what 'could' actually be there,ya know what i mean?
any scan is also only as good as the tech who is doing it,the rad ho reads the films and the specialist who gives their 'second' opinon on the films too. it all comes down to overall experience and knowledge of everyone involved. and of course, any and all of your actual ongoing symptoms too. in some cases, its a matter of just trying to track back the symptoms to that underlying source that is generating them.
you DO have 'something' there in that upper that is 'feeding' the symptoms you are displaying right now and have been. that is for certain. with the right doc,and testing and depending upon any findings in that MRI and just HOW old that is, will help in getting to the source.
just wondering if you have ever actually tried the myofascial release therepy for this? it does amazing things for all my muscle mess i have up there. just a suggestion for you if you have never gone there? but i would get those shoulders checked. the rotator tendon i tore was called the supraspinatus,it actually runs along the very top from the base of the neck to the top shoulder area. this is the MOST common tendon that people tend to tear. mine eventually snapped on me and i did not have a clue my shoulders were that bad til my MRI just showed all my real damage. i just had assumed alot of my crap was "just" my bigger c spine mess and it was not all. i do really think you just need to dive into this and get some things going towards a real dx of all of whats feeding your muscle hell. thanks for asking for me jane, it means alot. there are also many many good experienced knowledgable people here too who are wonderful. good luck hon. marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
Oh, yes, I am well aware of the pitfalls and uncertainties of MRI interpretation, that was something I encountered personally in the Ankle War (apparently feet are particularly hard to image, too many tiny but vital parts).
All of the tests related to this are at least 8 years old at this point, so I suppose newer tests might be necessary. I have seen the original reports at least, so I know there wasn't anything exciting there.
I have had myofascial release, and I learned a lot about my body there. I can self-release most of the trigger points around my right shoulder blade, too, but literally 3 minutes later they are all back in. My other trigger points elsewhere in my body tend to stay released for at least a few hours. Hence, I give credence to your theory that something is feeding them.
It's a little ironic, when I first saw this doctor, for my ankle, she was saying stuff like, "pt, exercise, pain control, maybe a nerve problem but there's no ligament damage," and I was saying, "No, there is something really wrong right in this spot here, figure out what it is." Now, it's the other way around, I'm the one saying, "There's no explanation, I just want it to hurt less," and she's saying "We should investigate more."
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