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Hi Mary, I'm so sorry for all your pain and hope that by now you have some relief. You do not indicate how old your are and this may make a difference.
It sounds like you have a lot going on. I was diagnosed with small fiber neuropathy about two years ago and I am now 65. It took a long time to get to that DX because I had every test imaginable first. All nerve diseases seem to need an exclusion process to determine what you may have. EMG's won't dx SFN. EMG's only detect large fiber nerve problems. Only a skin punch test will dx SFN so you will need to find another neurologist who can and is willing to do the test. I understand that not every dr will do it, thinking it unnecessary (check your insurance coverage) or have the capability to do it. It's rather simple and not really painful. Test results are sent out to a special company that studies it. When you have SFN, you have less nerve cells in your skin that you should have which is why certain symptoms appear. It usually starts in the feet and could work it's way up the leg. Your hands can be affected. But I'm going ahead of myself.

After I was DX'ed with SFN I began to have other symptoms that did not seem to match those of SFN. I made a record of how I felt each day. It was much like yours: pain all over but goes away with rest (initially). More and different pain developed. I waited to see my specialist but in that time, I did some research and noticed my NEW symptoms matched fibromyalgia. I was a little disheartened to hear this, but I wasn't about to DX myself. When I went back to my specialist, I gave her my record and we discussed my 'new' pains. She recognized it right away and told me fibro is probably what I have as they go hand-in- hand. Ugh!

To make a long story short, I found a very good rheumatologist, upon finding one over the recommendation of my neurologist, who agreed with the fibro dx. Please do some research on this and you will find that the way they dx fibro now can be somewhat different than in the past, mostly with the pressure points dx. Please consider pain management. I have never read that pain meds ruin your nerves, but I'm afraid pain meds are the only relief. Exercise helps. My dr. does not believe that certain foods affects EVERYONE, but MAY affect some people. I was particularly interested in his answer to this question. It didnt seem that food affected me one way or the other. For me, I think the weather may affect me. I life in the Northeast and wet, cold rainy weather seems to be the culprit.

I hope you are feeling better and my recommendation is find a GOOD rheumatologist and see him. Studies have been done that indicate that fibro may be related to our brain system and thus our nerves. Research that as there is a very renowed dr. who studies fibro and the brain. His name excapes me but you'll find him.

Feel better!





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