Small Fiber Neuropathy: What helps?

Hi @johnbishop, I am trying to find out if someone is getting treatment not only for the symptoms of SFN (pain treated with Gabapentin, Lyrica and Cymbalta,...) but the disease itself. SFN is so new in Neuroscience that research is more focus on detection than on a cure.... So my questions to you all is, are you on a treatment to slow down the degeneration of small fibers? If yes, what are you taking?

Hi @ncameron, I am of the same mind frame as @jeffrapp on when it comes to a treatment that can regenerate nerves. WinSanTor has a clinical trial on Pirenzepine that is supposed to work by helping nerve regeneration - https://winsantor.com/ --- A 24-Week Study of Topical Pirenzepine or Placebo in Type 2 Diabetic Patients (T2DM) With Peripheral Neuropathy: https://clinicaltrials.gov/ct2/show/NCT04005287. I think it's a long way off to help most suffering from neuropathic pain (just my opinion).

I think the supplements I'm taking have helped slow and possibly stopped the progression of my small fiber PN but I only have numbness that it's pretty subjective on my part unless I want to pay for a nerve conduction test or skin punch biopsy to see if it's gotten any better or worse. I can say that I'm finally having a little more feeling in my feet lately but they are still numb. It's just that I can feel areas on the feet and wiggle the toes and they feel more normal now than a year ago. I shared that in my previous post that I think you saw in the Member Neuropathy Journey Stories: What's Yours discussion.

I think all of us would love a fix 🙂 to take us back to pre neuropathy days. I had held out hope for a long time on stem cell therapy for neuropathy but there doesn't seem like there is much support and testing on it. We had a researcher speak at a meeting of the Minnesota Neuropathy Association on stem cell therapy research in August of 2018. I took some notes and added the research links when I got home. The last section of the notes details why the science is not there yet.

Minnesota Neuropathy Association Meeting Notes Aug 4, 2018:
- https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2019/02/18Aug04-MNA-Mtg-Notes-1.pdf

Hi @ncameron, I am of the same mind frame as @jeffrapp on when it comes to a treatment that can regenerate nerves. WinSanTor has a clinical trial on Pirenzepine that is supposed to work by helping nerve regeneration - https://winsantor.com/ --- A 24-Week Study of Topical Pirenzepine or Placebo in Type 2 Diabetic Patients (T2DM) With Peripheral Neuropathy: https://clinicaltrials.gov/ct2/show/NCT04005287. I think it's a long way off to help most suffering from neuropathic pain (just my opinion).

I think the supplements I'm taking have helped slow and possibly stopped the progression of my small fiber PN but I only have numbness that it's pretty subjective on my part unless I want to pay for a nerve conduction test or skin punch biopsy to see if it's gotten any better or worse. I can say that I'm finally having a little more feeling in my feet lately but they are still numb. It's just that I can feel areas on the feet and wiggle the toes and they feel more normal now than a year ago. I shared that in my previous post that I think you saw in the Member Neuropathy Journey Stories: What's Yours discussion.

I think all of us would love a fix 🙂 to take us back to pre neuropathy days. I had held out hope for a long time on stem cell therapy for neuropathy but there doesn't seem like there is much support and testing on it. We had a researcher speak at a meeting of the Minnesota Neuropathy Association on stem cell therapy research in August of 2018. I took some notes and added the research links when I got home. The last section of the notes details why the science is not there yet.

Minnesota Neuropathy Association Meeting Notes Aug 4, 2018:
- https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2019/02/18Aug04-MNA-Mtg-Notes-1.pdf

I am going to reiterate what John has said. To my knowledge Winsantor is the only regrow treatment in the works that has shown promise, but it looks to be years away unless you qualify for a trial.

Knowing John I take the same vitamin supplement program that has stopped and I feel reversed my neuropathy progression. Now I did also do a treatment called Neogen Synaxes that I feel had really good results with but that’s purely based upon feeling not fact. I tried multiple other treatment programs with zero results.

Hi everyone! I have been closely following this thread and want to thank everyone for the valuable information that has been posted. I too suffer with SFN and have not found any relief with the medications that my neurologist has suggested. I am very interested in trying the vitamin regimen that Jordan and John mentioned. I would very much appreciate if you could share the details of the regimen. If this supplement program was previously posted, perhaps you could direct me to where I might find it. Thank you so much for all the information!

Hello @tappanzee, Welcome to Connect. You also may want to share your story and read what others have shared in this discussion - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You can find all of the details for the supplements myself and some other members take in the following discussion.

Have you tried the new Protocol 525 product for neuropathy relief?
- https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

Can you share what treatments you have tried?

@lisadog33 I have a lot of the same issues. I was diagnosed in July. But like you said they said my other issues weren't apart of my SFN. Then I was diagnosed with chronic fatigue and bladder issues with it releasing it self to not being able to go at all. And diagnosed with IBS. I have a whole bunch of other things going on too but after being with mayo for 16 months, they still had no answers. And they weren't treating anything. My insurance found me another opinion and I was finally diagnosed with AAD-EDS (articilo-autonomic disorder/ Ehlers- Danlos spectrum disorder) which explains everything I have going on. From what I was told is that small fiber is caused by something. But trying to pinpoint it is the hard part and sometimes they never do. I was blessed when my insurance did an evaluation over my medical record when I asked and got me to the right doctor to be diagnosed. Have they looked for POTs? I have POTs and they said it's lile your body is stuck in fight or flight and it makes everything work incorrectly. Like my bladder, heart, bowels and hearing, etc

Not sure this will be much help but please if you need to reach out.

Hello I wanna diagnosed with small fiber neuropathy in November. I have tried all the medicines lyrica cymbalta gabetin amptrypilline nothing has calmed the burning pain. I have burning pain on my triceps and entire back into my buttocks area and a band of numbness below my chest Around the upper area of my stomach which makes it difficult to breathe and eat. I was vitamin b deficient even though my numbers read high and my blood sugars where out of control. I have lowered my ac1 to 7.5 and have been receiving vitamin b-12 methlycoloban shots. Has anyone ever experienced the burning sensations on there backs and the band of numbness. I only read about hands and feet and nothing else.

Hello! Such helpful discussions. I am 57 and have been suffering w idiopathic SFN for almost 3 years. I am trying to manage with healthy lifestyle and such... Wondering...has anyone had success with microdosing w THC??? I have heard it can help symptoms. Possibly a better alternative to Gabapentin....