Small Fiber Neuropathy: What helps?

...hope you get your needed increase in pain meds today and that they will soon bring some relief for you; my day turned itself upside down, now have heating pad on belly and back and a cold pack on right side of face which feels numb but actually isnt: so many things it could be on top of what I already have.... then my anxiety kicks in and the tears which don't help: I am not a jealous person but I must say I envied the many folk walking past our house today - it was cold - but sunny..... walking their dogs and laughing..... I really don't envisage that for myself any more.... well only almost 7pm but that's it for me tonight, again, our clocks go ahead an hour tomorrow in Ontario: wish they would stop that.... oh must be feeling slightly better as starting to complain: take care poppsy1 and everyone, and especially those who had a really bad day: the Ides of March? J.

Hi, I am a sufferer from small fiber neuropathy and I am also a neuroscientist. I am so sorry that you have to go through this pain without a good neurologist at your side. Small fibers make up 80% of your peripheral nervous system. It controls the bowl, the bladder, part of your vision, your sweat glands, the feeling you have in your skin and it modulates your heart activity. My advice to you, fine and new neurologists.

Hi Lacy Meds help a little, trying to stay calm. Have to limit myself by just walking around my flat, eg making drink etc. Scared to walk any further as pains around my sensative area's will shout at me. So very sorry your having a rough time Lacy, its so unjust. I beleive that for us all its the unpredictably of what we are going to be faced with every waking day. I'm with you on the subject of being envious of others going about their daly buisness. What we would give to be in their shoes. Im going to try and cheer myself up a bit by having my favourite meal Fish and Chips, bread and butter. ( Chip Butty) Take Care Big Hugs!

Hello @ncameron, Welcome to Mayo Clinic Connect. I imagine being a neuroscientist makes it a little easier to understand what's going on with your body and neuropathy. That's originally what drew me to Mayo Clinic Connect in 2016, wanting to learn more about my condition and what the future may hold for my small fiber peripheral neuropathy. I did like my Mayo neurologist but wasn't really happy with his diagnosis and treatment since he said I was one of the lucky folks with small fiber PN with only numbness and no pain. You may also be interested in another discussion here on Connect.

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

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

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?

I'm sure @johnbishop will reply with more information.
I am not aware of any medicine or technology that can regenerate nerves, although I believe there are one or more candidates in clinical trials.
There are numerous alternative approaches which claim to regenerate nerves, but I haven't seen any scientific studies which validate these claims. There are numerous individuals and groups advocating for these products, presenting only anecdotal evidence.
Of course, if the underlying cause can be identified (diabetes, pernicious anemia, etc.), then any efforts which addresses these conditions beneficially will possibly stop or slow down the progression of PN.

@ncameron I got P.N. after taking a Quinolone medication, Norflox, for bladder infection in 2016. Toes, feet, lower legs, fingers hands lower arms tingling etc. but no neurologist here; saw one and decided not to take meds for it because I have so many allergic reactions and other illnesses (cancer survivor, tinnitus, ibs-d, c.diff, migraines, glaucoma, fecal inctontinence and some others not all at once but over the years.not complaining just saying) however in last few months have internal tremors which dont hurt but are very disturbing so that's why upcoming appointment - and also a lot of catch up dental work using lidocaine and epinephrine and others and I would like to ask neurologist IF these numbing agents has made P.N. progress to the internal tremors, if thats whaT I have along with teeth out nd a bit of a numb face one side..... there are a lot of nice people on this site are having much more problems with SFN than me and taking appropriate meds... but some seem to cause a lot of side effects also
yes: is there prevention as well as treatment is that what you are asking..... for one thing, medications that warn "could cause neuropathy" should be in GIGANTIC LETTERS ... best wishes in your search for information, J.

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

Wow John, I was there at that meeting? Was I asleep? Thanks for the notes and references.
May you find joy today.
Chris

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.