Small Fiber Neuropathy: What helps?

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....

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.

thank you for reaching out! suffering with SFN can be such a lonely journey. my husband found it, and suggested i join. i am not sure what he was searching for - likely he just googled Small Fiber Neuropathy.

You are not alone! The one suggestion I would have is to read, search and learn as much as you can about your condition and possible treatments. The more you know, the better questions you can ask your doctor or neurologist and hopefully find something that helps you. Here are my two go to websites for information on neuropathy.

Neuropathy Commons: https://neuropathycommons.org/
Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Good luck on your journey and feel free to jump into any discussion and ask questions of members. If you see a post by a member and you want to ask a question about it, just click the REPLY button directly under the post. If you have a question not to any specific member but just something you want to ask members following the discussion, scroll to the bottom of the page and type your question in the Comment box and click the POST COMMENT button.

Hello @lcassotta, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. A healthy lifestyle can certainly slow down and help some of the symptoms of neuropathy or at least not make it worse which not so healthy lifestyle can make it worse. There is another discussion where members have shared their neuropathy journey which I think you may find helpful.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

@artscaping has some experience with using THC but I'm not sure about micro-dosing. Here's a link to her story in the discussion above - https://connect.mayoclinic.org/comment/310344/

The Foundation for Peripheral Neuropathy has some information on Complementary + Integrative Therapies on their site: https://www.foundationforpn.org/living-well/integrative-therapies/

Do you mind sharing what you were searching for when you found Connect?