Quote:
Originally Posted by heb1212
Mrs. Redman: I have axonal nerve swelling discovered on a punch biopsy that the neuro and pathologist said was of "unclear clinical significance." The fiber densities were in normal range. However, the neuro has said that based on the type of symptoms I have and the widespread nature of them that I have a central sensitization syndrome. You can read my other posts if you'd like a full description, but I burn from head to toe and from inside out. I also have severe muscle pain and joint pain. But no diagnostic tender points typical of fibro. Fibromyalgia is a central nervous system sensitization; but you could have SFN too. In fact the prolonged SFN pain could trigger the central sensitization of pain. That's what they think may have happened with me. It's really hard when the best of the best doctors scratch their head about your case. Anyway, I've arrived at a place where THE PAIN IS THE DISEASE. It took a long time for me to get to that understanding, and it has helped me be open to more aggressive pain management.
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Thanks for your input. I was dx'ed with SFN by punch biopsy after every imaginable test alive! (all negative, of course) Since SFN is so rare, this test wasn't considered until all else failed. From most of the posts I've read with people with SFN, they all mention severe burning throughout their bodies. I do not have this (yet? maybe never?), though my feet burn at times but not in excess or for days on end. They will hurt, though, and I suspect that my sore feet for years were a precursor to SFN without me knowing it. Ah! Hindsite! I want to begin taking the supplements that have been mentioned in past posts by others. I am starting B-12 (though that reading was ok), Magnesium (though my first dose made me somewhat sick), alpha lopoic acid (gave me a bad case of GERD even though I took it with food) and some of the others that I will research yet again. I believe Mrs. D has a Sticky on that. I am not diabetic, but my reading was 99, just a tad below 'bad'. But when I asked about this, I was told it had to be REALLY high to be considered diabetic or pre-diabetic. Sweets are not my downfall but carbs are. Perhaps, because everyone is different, my 99 is actually too high.
I see my specialist next month. I need to talk to her about what is causing my SFN because I keep reading that once a cause is found, other than idopathic, it can be treated. I hope to get some encouragment from her even though every test was negative. I was also tested for large fiber just to be sure they were ok and they were. Perhaps she will test me again. Ugh! Thanks for your input. I will keep reading.