Ideas for pain relief from Small Fiber Neuropathy (SFN)

@burningfeetinphoenix
Hi, Pam
Yes, I've looked into it and noted that the article which you mention is a single case study. I've also come across other studies which have given me pause, such as https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057686/ which concluded the following:
"Topical capsaicin leads to degeneration of sudomotor, vasomotor and pilomotor nerves accompanied by impairment of sudomotor, vasomotor and pilomotor function. These results suggest the susceptibility and/or pathophysiologic mechanisms of nerve damage may differ between autonomic and sensory nerve fibers treated with capsaicin and enhances the capsaicin model for the study of disease modifying agents. The data suggest caution should be taken when topical capsaicin is applied to skin surfaces at risk for ulceration, particularly in neuropathic conditions characterized by sensory and autonomic impairment."

In the circumstances, I moved on. - Liz

Thanks @elizm...You are probably right but the the paper by the French researchers is dated 2019 and the NIH one is 2010. Perhaps progress has been made. I'll ask my neurologist. Pam

@burningfeetinphoenix My pain specialist suggested I try capsaicin, and I saw no improvement. Stepping up to the level of having application in the doctor's office sounded like a real hassle. I learned that I have to wear gloves to rub the cream on my feet because even after washing my hands thoroughly, if I touched my eye, it burned badly.

Jim

Hello @dazzah1234, I would like to add my welcome to Connect along with @artscaping and other members. I chose to answer your private message here in the Ideas for pain relief from Small Fiber Neuropathy (SFN) discussion in the Neuropathy group so that you could meet other members with small fiber neuropathy and learn what helps them. I have small fiber peripheral neuropathy but I only have the numbness and no real pain. I shared my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

There is also another discussion that might be helpful to read through and meet other members with SFN.
> Groups > Neuropathy > Small Fiber Neuropathy?
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

In your message you mentioned that you use methadone 20 mg 10 mg twice daily and that has helped over the last 4 years but you have had a increase in pain and and are hoping to get it back under control. Have you discussed any other medications or supplements with your doctor that might work better for the pain?

Has anyone tried electrotherapy for small fiber neuropathy, specifically the ReBuilder? I read about in the book "Reversing Neuropathy" by Dr. Brian Prax. It is like a TENS unit, but it supposedly transmits nerve signals from one foot to another. It is supposed to measure your actual nerve signals and tries to cancel out the "bad" signal. I talked to a local retired physical therapist who has used it extensively and he says he has a 80% improvement rate. I made an appointment with another physical therapist to try it out. Does anyone know anything about Dr. Brian Prax? He seems to have a lot of ideas on how to relieve neuropathy symptoms.

My son knows one person who has used the rebuilder, and swears by it. I know you can even by your own, and there are websites for it. I also saw it being sold by a chiropractor on eBay. New ones cost about 1200.00 or so, if I remember correctly. I almost bought the one on Ebay, but it just kind of bugged me why the chiropractor was selling it. He told me he just did not have much use for it in his practice, but I wondered if he was selling it because it did not help people much. I never bought one, and as I have said, I just heard about one person who has gotten relief from it. I have listened to Dr. Prax on youtube. How was his book? I almost bought it. I think he made a point though, that if a certain percentage of nerves are damaged, the neuropathy is irreversible. I think I thought mine was irreversible. He is a bright guy who does all kinds of health videos. Anyway, best of luck...Lori Renee

Hi @cwallen, There is another discussion you might be interested in that discusses using the Rebuilder.

> Groups > Neuropathy > Rebuilder
-- https://connect.mayoclinic.org/discussion/rebuilder/

Can you let us know how your appointment goes if you try it?

Thanks for the input. I'll let you know if it helps me. I saw some on EBay for only $500. Dr. Prax's book sounds good if everything he says is correct. I haven't finished the whole book yet - it is pretty short. I'll have to watch his Utube video.

Yes, I certainly will. Thanks for the link.

From @burningfeetinphoenix...re. PEA update. I've been on the trial recommended PEA capsule dosage for several weeks and started the PEA topical (Soothamide 2%) on my feet a week ago. So far I have noticed some improvement in the burning. However, it has gotten cooler in Phoenix and my mail problem is heat sensitivity. I have been emailing with Dr. Kopsky, one of the Dr's from the Netherlands who does pain research and has written numerous papers on pain treatments including topical Phenytoin and other compounds. He says I should get the 10% Phenytoin compounded at a compound pharmacy. You can read several of the studies available on-line about the how this product works and several of the studies he has done showing great promise for this compounded topical cream. I cannot post a link but here is one of their case studies. You can just Google it. This will be my next "clinical trial of one"! Will keep you posted...Pam

Phenytoin Cream for the Treatment of Neuropathic Pain: Case Series
David J. Kopsky1,* and Jan M. Keppel Hesselink2