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Old 02-02-2017, 03:17 PM
NicoAvA NicoAvA is offline
Junior Member
 
Join Date: Nov 2016
Location: France
Posts: 13
5 yr Member
NicoAvA NicoAvA is offline
Junior Member
 
Join Date: Nov 2016
Location: France
Posts: 13
5 yr Member
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Quote:
Originally Posted by boiler1993 View Post
Hi NicoAvA - I am currently only taking a beta blocker for tachycardia that started after all the other nerve issues. So here is the odd thing, my large fiber involvement stopped about 6 mos after it started and then the small fiber took over. Doctors originally told me that my symptoms were a reaction to a virus and that the small fiber symptoms should fade in time. Well they did not fade and my docs diagnosed it as Non-length dependent SFN. I did have a skin biopsy however because I was 19 at the time the results could not be fully interpretted. I had ENFD that were within "normal limits" however my issue here was always that the normal is for an average age of like 45 or 50 and it is proven that nerve density decreases with age. Anyway with the same biopsy I had an abnormal sweat gland nerve fiber density. That along with two abnormal QSART test my doc felt comfortable diagnosing SFN.

I took several medications over the past 5 years. I started with gabapentin but found it made me spacey and light headed. Then I tried cymbalta. This was a terrible choice for me - completely made me "lose myself" and made me lose all appetite. After that awful experience I did not decide to try again until a huge flare when I started my first job. I had symptoms all the time every day for months before I decided to try again. This time it was Lyrica. I tried that for about a year before realizing it was the reason I would almost fall asleep at the wheel of my car and also was effecting my mood a lot. So now I have been drug free for about a month and half. So far no major flare, just feet hurting when I first wake up and some occasional other sensory symptoms.

Do your symptoms come and go as well? that is what perplexes me the most. Every time they go away I really do think they will never come back. So I guess we'll see what happens this time.
Sorry to hear that you had such a bad experience with pills....
My symptoms absolutely seem to come and go. During my first two years, it remained mild and the flares sometimes lasted one or two weeks only. So a normal life, a manageable pain. But a couple of months ago I had a huge flair with burning and bad allodynia. Allodynia is my main problem, by far. These days the pain seems to gradually go.
Before my huge flair I really felt like I was almost healed, so it has been very hard. It is very confusing that it comes and go. In a way, that gives me hope that we can work on preventing the flares, and eventually be healed.

My doctor said, so far, that I have no nerve death but "nerve hyperexcitability"
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