Just Diagnosed with Small Fiber Neuropathy

Rachel, on a post somewhere in this dialogue, you mentioned your experience with R-Alpha Lipoic Acid and the regimen you have found that best suits you. I ordered the R-Alpha Lipoic Acid 300 mg and thought I might take just one capsule/day for several weeks. Do you take it morning or night and also with or without food? Also I just receive liquid B12 Methylcobalamin & adenosylcobalamin. This is all new to me .. have you heard people mention with or without food etc? Thanks for sharing .. fresh diagnosis and a lot to wade through.

HI @rebe, welcome back to Connect. Thanks for reaching out with your questions about my experience with R-Alpha Lipoic Acid. I noticed you haven't posted in a while, I'm sorry for your recent diagnosis of small fiber neuropathy. Did you have a skin punch biopsy to confirm your diagnosis?

My neurologist recommended I begin taking R-Alpha Lipoic Acid and Acetyl L Carnitine for neuropathy. Although I no longer take supplements, I recall him prescribing the dosage. Have you spoke to your neurologist regarding supplementation and the best practices?

Has anyone had the Nerve Block done for peripheral neuropathy? I am having it done next month as the RX and other treatments haven't been successful. What should I expect? Doctor said they will do an injection on the inside of each leg below the calf. I hope this works cause I have no intent to do the stimulation implant. Thanks for your time.

I was just dx with sfn. I have it from head to toe and have had it for about 2 years. Did your pain Dr. recommend injections or your neurologist? I'm interested to know if they work. Thanks.

Hello @moni130, Welcome to Connect. While you are waiting for reply to your question from @myfeetareonfire, I thought I would ask what treatment you have been on since you were diagnosed 2 years ago and if it is helping or not?

This is a LONG thread and kind of all over the place. I originally came to this thread because of ischial tuberosity pain on the left side which I have dealt with for about 2 years. I have been in pelvic floor therapy for most of the year. If I sit too long, not only do I have the sitz bone pain but also pain in the pelvic floor itself. Probably because of my underlying condition of hypermobile Ehlers-Danlos, I am not coming to resolve on pelvic floor strength and improvement. So I am just on maintenance therapy. I have an appointment every three weeks and usually have some internal myofascial release done as well as external release around sitz bone and tailbone areas. I was feeling pretty frustrated but see that many of you are far worse than I am -- which gives me some perspective.

My pelvic floor therapist is stumped as to the sitz bone situation. I was just referred to another PT and will see her tomorrow and hope she has some ideas to improve my ability to sit. I have been wondering about upper hamstring tendinopathy or gluteal tendinopathy as a root cause. I am hopeful that we can find some exercise or forms of movement that will be helpful.

I did have some pudendal nerve entrapment for a while but that does not seem to be the issue now. With hEDS, because of the laxity of so many tissues, nerve impingements can be common and laxity of connective tissue can present many problems too.

Interestingly, I was diagnosed with EMG positive polyneuropathy and told that I had peripheral neuropathy in 2015. At that time, I had a lot of tingling sensations in my feet, felt like a hairbrush being pushed into feet, poor balance, couldn't tandem walk or stand on one leg. However, I think this is all just due to my hEDS. My neuropathy symptoms are very intermittent. I can now stand on one leg for over a minute. I can tandem walk. If I'm really tired or stood a lot in a day or am overly stressed, the tingling symptoms are more prominent. My feet can get really cold sensation but I haven't had that for quite a while either.

@affliction313 pretty much the same. Very scared of what my life will look like with this. But I can feel it started in my feet, legs and now it’s just not normal numbness and pain everywhere. Scares me a lot because I’m only 46

@albiet Hi, I'm brand new to this Mayo group, diagnosed with 'Small Fiber Neuropathy with Autonomic Involvement' in 2016. At least my neurologist's nurse said: "Your notes indicate this is the nearest diagnosis that matches your symptoms at this time". Since then, the stinging and burning pain is spreading from both buttocks (worst pain which prevents me from sitting for more than a few minutes and has destroyed my social life and travel) to all limbs, face and eyes. You ask about supplements so what I can say is, along with other things I do, being a Nutritarian partly involves taking supplements and my physician, who supervises this, assures me that along with the other health benefits being Nutritarian slows the progress of the disease.

Just saw this upcoming Foundation for Peripheral Neuropathy webinar and thought it might be helpful for newer members and folks struggling for some answers.

PN unplugged: Stories, strategies, and support
Thursday, May 07, 2026
12:00 PM Central Daylight Time
Register here: https://event.on24.com/wcc/r/5315590/EBE670BD94505B63A97FF6B493442656
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As part of this year’s Peripheral Neuropathy Awareness Week, join us for a new webinar format centered entirely on the patient experience. This interactive panel brings together people living with peripheral neuropathy to share their personal stories and what helps them navigate daily life.

The discussion will focus on lifestyle and symptom management, covering real-world topics like helpful techniques to manage symptoms, diet approaches, and mindfulness practices. Each participant will give a brief introduction and share their PN journey.

This session is truly for patients, by patients, a chance to hear from others who understand what it’s like to live with PN. While there’s no single solution for everyone, the goal is to share ideas, offer helpful tips, and remind you that you’re not alone.

Questions submitted during registration, as well as live polls and chat, will help guide the conversation in real time so you can be a part of it.

Don’t miss this opportunity to connect, learn, and be part of the PN community during Awareness Week.