Small Fiber Neuropathy

I'm 78yrs old now. I was finally diagnosed with small fiber neuropathy several yrs ago. It was puzzling why it presented that way. Awhile later, it occurred to me that I was a heavy alcohol drinker until about age 30yrs. I mentioned it to my doctor and was told it could cause it. The affected area is just on the facial side, down to behind the toes. I experience all the sensations such as tingling, burning, numbness. After trying a few medications, which none helped, I was started on Amitriptyline and it was substantial help immediately. That's what I take now. I discovered a balm called +Plus CBD, 100mg. When it bothers me more than usual, I apply the balm to the affected area and it gives substantial relief. It's something I live with anymore - don't know if this helps anyone but that's my experience.

Hi there Joy (if I can call you by your name?), I understand. It is frustrating. I guess you can wait on the skin biopsy........it is just that a confirmed diagnosis tells other medical entities and professional clinicians what they are dealing with in order to help you. You can have multiple punches, e.g. ankle, leg, etc. They are hardly invasive. It takes about 3 seconds and a small bandaid. As long as your neurologist is the only clinician you have and he treats you for SFN, you should be fine. However, if you want to seek help at another facility like Mayo Clinic, you will need the skin biopsy results. And if you want to take advantage of MFR or other therapies, your insurance may require confirmation of the diagnosis.

Now....let's focus on something else.......medical cannabis. Do you live in a state in which medical marijuana is legal? Have you had any experience with medical cannabis? I have managed to control my SFN pain and discomfort without any other pain medicine. I happen to be highly sensitive to medications so this is perfect for me.

I do have GAD.....general anxiety disorder as a result of my SFN and so I use Duloxetine (Cymbalta). Since anxiety creates pain and pain creates anxiety, this helps me avoid that whole merry-go-round.

I see that you are learning a lot from John Bishop about the supplements which help him tremendously.

We are here for you..........no questions or thoughts are ever unwelcome.

Chris

Chris -
I had a sural nerve biopsy last year that confirmed I had PN and severe axonal nerve damage. I’ve never been told whether it is SFN. Would the sural nerve biopsy discover SFN, or is the skin punch biopsy a specific test for this? I ask because I finally get to see a new neurologist in our system in late June, and am getting my questions ready!
I’m sorry to hear of your Covid exposure after all you do to take care of yourself. It must be harder in our bodies given the challenges we face. But I’m glad you finally got to restart your SFN care and relief. Hugs!! I appreciate your help!

Hi Debbie, Thought I would jump in for Chris @artscaping to share some information I found that may answer your question.

"What is sural nerve biopsy for?
According to literature, sural nerve biopsy provides the most useful results in interstitial neuropathies, such as vasculitis, granulomatosis, amyloidosis, or atypical forms of CIDP (7, 22). Nov 22, 2019" --- Diagnostic Value of Sural Nerve Biopsy: Retrospective Analysis of Clinical Cases From 1981 to 2017: https://www.frontiersin.org/articles/10.3389/fneur.2019.01218/full

Thank you for reaching out. My neurologist has been discouraging me from doing the skin biopsy for several reasons. He said he is pretty sure that’s what I have, so why do something invasive that isn’t necessary. He also said if it comes back negative, that doesn’t mean I don’t have it, it could just be that it didn’t show up in the piece they took. So I thought I wanted to do the test to know for sure, but am now pretty confused if I won’t know either way. I just recently found out this might be the diagnosis, so I haven’t tried a lot of things yet. I did try acupuncture, and that didn’t help. I am also taking a 5000 mg of Vitamin B12 every day. I guess I could have SFN without pain and burning. I’m just fearful of what is to come and how fast the progression will be.

Thanks for sharing what works for you. How did you discover these medications? I am sure other members would like to know. Sometimes it seems like such a big, messy world and it is hard to trust some of the promotors and their ad campaigns.
Chris

I also have little feeling in my hands, feet and lower legs, but no pain. I had to give up golfing and bowling because of the balance problem and stopped driving when I couldn't feel the gas and brake pedals. I also tried acupuncture, but it did not help. My father and one sister had the same problems so I am convinced mine are genetic.