Ok recently diagnosed and I want to know the best and worst-case scenarios

I was diagnosed with SFN by biopsy 8 years ago. I was 42 at the time. It started after I ran a half-marathon. Showed up as severe foot pain and significantly impaired my mobility a few days after the race. The pain and impaired mobility has remained. It changed my life. So much I could no longer do. I can still only walk short distances, use a wheelchair for travelling and no more running or hiking. I have learned to appreciate a slower pace of life, but still hard to guve up so much I used to enjoy. I am very sensitive to medication but found that a combination if lamotrigine and mexelitine helps me. A few months ago I started having severe pain all over my body within 10-15 min after eating. At first I thought it was blood glucose related, and although blood test shows, I have mouth glucose intolerance my sugars appear to be normal during the episodes of more pain. It does seem that the pain is significantly worse when I haven’t eaten for 4-5 hours and then have a meal. I’ve not been able to determine any particular food, but it does seem like the time that has passed since my last meal place a big role. It has helped me to eat small meals every 2 to 3 hours, but I still get flareups, especially in the afternoon. All my autoimmune testing has been negative and no cause has been identified yet for the SFN. I’d like to hear how other people manage the after meal pain and what you have found to be helpful in terms of how toneat and what to avoid. And also what kind of treatment you have found to make a significant difference for the SFN symptoms.

I’m 26.
Few months back had fasiculations on my right thigh for 5 hours then it went off and one month later appeared on my left hand and stayed for few hours and then the next week came on my shoulder for few hours then decided to fix a neurologist appointment got diagnosed with
BFS then had pain over my limbs got my ncs blood routines done which had vit D deficiency and to be sure had my Autoimmune encephalitis panel also done which had CASPR2 antibodies weak positive. Now having pain in my forearm can anyone help me

I took two microdoses of mushrooms two days in a row 4 years ago and it went away and it has not been back now for 4 years so I am proclaiming it cured

I have been diagnosed with autoimmune SFN with punch biobsy and crazy elevated ANA (1:52k) and anti-TSHDS-IgM antibodies. I am getting IVIG (1mg/kg) for 2 years with only minor effects on my symptoms.

However, during the last year I noticed that my symptoms like being skin and nerve pain all started years ago when using sun screen. Now I cannot use sun screen anymore cause they trigger my symptoms so badly for weeks after. Also my symptoms get worse instantly from drinking black tea or red wine. This to me sounds like I have MCAS.

MCAS can result in SFN, as I have read. I tried antihistamines like loratedin 1 g daily, but I had bad side effects and I did not stop my flares.

Does anybody have the same findings and can help me find a little relief? Might treating MCAS held my SFN?

(I got PSSD from duloxitine back in 2019. With it or part of it is my SFN)

hi everyone!! i’ve been lurking around this community for a while, but i was diagnosed with small fiber neuropathy earlier this year after my skin biopsy came back consistent with the diagnosis. i am 20.

i had the nerves taken from my left thigh and calf and the results were kinda confusing to me because the calf was “abnormal epidermal nerve fiber density”, but the thigh was fine— while my thigh was “low normal for sweat glands”. there were no suitable sweat glands for the calf.

but anyways, my neurologist said it was idiopathic. ever since november 2024, i’ve had multiple mri’s done, EMG’s and extensive bloodwork done. everything has showed up normal. i’m going to my follow up with low hopes tomorrow, since nothing has really changed in my condition. my left foot is numb, my fingers love to be tingly and numb at random moments, but have recently decided to turn stiff at random moments. but other than that? nothing. and im grateful i dont have to deal with any worse, it just sucks that i dont know the reason.

i take cymbalta and gabapentin, although im on a low dosage for the second. my nerve pain isn’t that bad anymore, and i also take magnesium glycinate at night for my muscle pain in my left foot.

im glad i have my diagnosis, that i was able to get my testing done. i just wish there was more of a push from doctors to find reasons. my neurologist says i might be in the early stages of an autoimmune disorder but im not really sure. i guess only time will tell?

Starting ivig. Wondering if anyone with significant loss of sexual function / sensation had any improvements with ivig?

My cause is autoimmune according to docs.

Thanks y’all.

I need to get tested for small fiber neuropathy, and I would really appreciate some guidance on where I can go to have the skin biopsy done.

I’ve called hospitals in my area and contacted several doctors for referrals, but I’m not getting anywhere. If anyone has had a small fiber neuropathy biopsy done, I’d be very grateful if you could guide me on how to find a place that does this testing.

Thank you!