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Non-Length Dependent Small Fiber Neuropathy
Neuropathy | Last Active: Oct 4 4:36pm | Replies (131)Comment receiving replies
HI I am new to the group. I have not understood how to private message anyone ...
I have been dx with Non-Length Dependent Small Fiber Neuropathy last week, after 2 years of symptoms. Mine started avec my booster. Actually, after the 2nd one I had join pain and high inflammation markers but after the booster my neuro symptoms started. For 16 months I was on prednisone. Then in February, when I was at 2mg of prednisone, I started having burning on my face. Until then, I only had internal vibrations. I then started LDN which was magically helping until last week, it just suddenly stopped working.
The day I learned about my Non-Length Dependent Small Fiber Neuropathy diagnosis, I started having burning hands and feets, nerve pain everywhere but mostly hands and feet as well. My vibrations are back worst than ever! I feel that I am living in hell. I have refused all the medication you guys discussed: lyrica, gabapentin, cymbalta ... because I tried them before and went through hell with them and the withdrawals side effects.
I don't know how you are all able to live and function with these horrible symptoms. I feel that I am at the end of the rope. I don't know what I can actually do to help. I have tried soooo many supplements, and diets, nothing works. I can not live like this, I can not sleep because of the vibrations.
Replies to "HI I am new to the group. I have not understood how to private message anyone..."
I have the same condition (small fiber neuropathy). I also don’t take Cymbalta, gabapentin, et. al. I don’t tolerate medication well and so I’m afraid to try them.
I do take LDN, but I see you were taking it, and it mysteriously stopped working. Would you try a higher dose? You didn’t mention your dosage, but I used to take 4.5 mg and increased to 6 mg.
One thing you could talk to your neurologist about (if you have one) would be testing you for the FGFR3 antibody. There’s ongoing research at Washington University in St. Louis on this antibody. Your sample would have to be tested there. It’s associated with small fiber sensory neuropathy. If you have abnormally high levels of the antibody, you may qualify for IVIG or plasmapherisis (sp?). There’s not much research, and it’s hard to get it covered by insurance, but it’s intriguing if you truly want to try very medical intervention. I’m considering it.
Otherwise, I’ve had good success with PT, specifically for chronic pain (graded motor imagery) and/or you may want to consider a chronic pain rehabilitation similar to what Mayo offers if you’re not comfortable with medication (I am not). Or a pain management doctor, as @daj3333 mentioned.
It is tough and really unfair, both that this happened and that the medical system is not set up for treating chronic pain conditions. There may still be options out there. It stinks it takes so much digging to get to them, but we’re with you and can relate.
I can’t begin to tell you how many times I have said that I can’t live like this. And yet I keep on living like this. All that you can do is try to make it through that moment to the next. That’s how you keep on living like this. My sustains me as I know this is not the end or how things will be permanently.
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Try not to give up and keep searching for the right doctor and/or the right medicine. I haven’t found either yet but I hope the pain management doctor I see in two weeks will help. I know it’s not easy.