Quote:
Originally Posted by hibodhi
Hiiii
I apologize in advance haha
I have never posted on a website before and I'm not exactly sure what I'm doing... No lies, it also feels terribly awkward!!
With that being said, I registered yesterday to hopefully get some suggestions, tips, opinions... Absolutely any sort of knowledge or insight is welcome because I'm so lost.
I'm 29 years old, female
Three months ago I was diagnosed with "non-length dependent small fiber neuropathy" after skin biopsy results (ankle and thigh) showed there were zero nerve fibers left in both locations. I have pain consistently in my legs but also random attacks on my face, scalp, ears, collarbone, upper back, arms, and stomach. My neurologist does not seem to be very concerned but I'm feeling the polar opposite of that. During my most recent visit, I explained my newest symptoms and was told that it is progressing to my autonomic nerves. My next appointment is not scheduled until mid March... Should I be concerned? Gut feeling, I think so!
Thanks so much for any response!!!
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Hi Hibodhi,
I'm sorry that your having such nasty symptoms. Of course you should be concerned. The neurologists seem to not take small fiber neuropathy very seriously. One specialist told me - "don't worry, it might be uncomfortable - but it won't kill you".
Unfortunately, there's generally no "cure" for SFN, but there are some treatments that can help - if you can find the underlying cause. What tests have your doctors done to try and find the cause?
Even if the doctors can't find the cause, there are still things you can do to help slow the progression, and/or relieve the symptoms. The primary things you should be looking at beyond working with your doctors are: dietary improvements, dietary supplements, exercise, and stress reduction. These things have proven to be helpful to many, if not most of the people who frequent this forum. Although, how much it helps varies greatly from person to person.
If you truly have no nerve fibers left on your biopsy, and progression to your autonomic nerves, that is pretty severe. Chances are, the conservative treatments might not be enough. There are various medications that your doctors can provide to help with pain, but their effectiveness and their side effects vary from person to person. There are also medications that can help with the autonomic symptoms. (There are others here who can probably provide better information in that area.)
Best of luck. I know it is overwhelming, but spend some time to go through this forum. Take some time to read through some of the old posts, to get a feel for what others are going through and how they cope. Research your condition and what can be done to help. Work with your doctors to try and find the cause, as well as to find the right medications to relieve the symptoms. Hopefully you will start to feel at least a little better very soon.
