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I would have listed symptoms in the "subject" line, however I seem to be accumulating symptoms and once your focus is on your health and symptoms become salient, at times one cannot tell which symptom(s) is tied to the overall dx (if one exists) and which ones are normal bi-products of everyday living which produces all sorts of things in everyone!? I have been searching for a Dx for about 2.5 -3 years and throughout this period I have found my symptoms to not only worsen, but develop new "threads" and produce a myriad of symptoms that have hitched a ride along the path.

I began with the suspicion of of having a Pheo. and honestly, event though the Octriotide scan produced no significant findings it seems to remain as a "rule out." I also had a hx of high blood pressure since I was 12, but really began to be problematic along with cholesterol, when I was in my mid-late 20's. I had a hx of h/a and migraines as well, that developed into 3-4 a week and thus, debilitating. I went for two Radio-freq txs. and had problems after the second. I began having more generalized pain, achy, flu-like symptoms, would become bright red with a rash on various parts of my body, and sweat to the point, I brought an extra shirt to work. Vertigo, nausea, and Autonomic activation soon followed.

We did the IVIG tx and even though evidence states to the contrary, I think that I began much worse and my pain went to more specific locations- mainly the limbs, and the pain level bumped up from an average of 4/10 to 7/10 and began to have balance,and cognitive impairments (word finding, word switching, and tangential thought with some shorter term memory loss.) I moved to be close to Nashville and the autonomic d/o clinic at Vanderbilt. Since arriving, I have had to rehash all of the "evidence" of why I was on so many medicines, and what tests were completed, etc. All of which is obviously rational and needed for new tx to begin. However, I face the whole case of "proving" my case again and have been met with some serious questioning of the tx and dx, even though I was seen by a well-known and reputable Neurologist/ Pain M.D. on my regular visits, and a specialist in Richmond. VA that has several associations of research and such at VCU. It has been suggested that my biggest problem was the medicines and that I would need to be detoxed on the Psychiatric ward since they are versed in the procedures and then "see how I feel" and perhaps start another medicine- syboxin (which may be more problematic than the ones I am one.)

I realize that the M.D. community has about three, 1/3 splits: 1/3 believes in fibromyalgia and the like, 1/3 might believe in some cases and 1/3 that thinks this is more of a psychological issue. (Perhaps overly stated) I am here though, waiting and feeling like death most days and barely leave the bed except to stand for 10 minutes to urinate or begin to, I should say, changing shirts soaked with sweat, trying to stretch and keep my muscles working and just hang on for my wife one more day. I worked in a field that was close to many of these issues and realize that depression, anxiety, and merely stress can and do produce these and more symptoms. I have these things but secondary to the pain and constant feelings of tiredness, and barely being able to get dressed without breaking into a sweat and changing clothes right away... seriously. I have people stop me while I hobble down an aisle in the store and ask "Are you okay, sir?" b/c I am soaked, out of breath, and red as a beet! Sometimes, I am dry as a bone and have a cold pallor with body temperatures staying at 95.6- 96.2 for hours and then later reach 101. Same with BP- my average last 80 readings amounts to 242/117 and that is the average. I am out of energy to "prove my case again" and hang on b/c my wife is so wonderful that I feel that I owe her so much more than I am able to give. I have lost the ability to do almost anything that I was active in prior to this, and isolate myself to prevent the interpersonal problems to become yet another issue- just best if I am left alone and lay in the bedroom and stay calm and keep the fatigue and achy pain down.

What in the world do I have to gain from this? I cannot locate any secondary gain, but admit that I constantly search it out since I think "These people are experts and maybe I am just zoning into the classic hypochondriac? I doubt myself so much from this all and just wonder why the medical community is so conservative that they have no room for me on their spectrum of treatment since I am on the tailed ends of the bell curve and therefore, get less attention. Again, I get this, but where does this lead me? Chronic Regional Pain Syndrome untreated properly can blossom into some awful stuff... Anyone out there want to say an "Amen?" I wish you all luck and mostly hope- I am out and "hope" to find some again.


you can get an "amen" from me! very similar symptoms as yourself. debilitating. have your doctors come to any conclusions?