Just Diagnosed with Small Fiber Neuropathy

Hey Man, my name is Steve—I am 35 and have what they are calling “suspicious of SFN” so far everything looks normal regarding tests. My symptoms are not so bad yet but the is my second time having the feeling of needles in my skin. It’s rough. Also looking for answers and someone to talk to. I’m worried I’m going to be hit with the SFN idiopathic diagnosis—what’s the prognosis for that sort of thing?

26 yo, Female. I was diagnosed with SFN through punch biopsy in the last year. My symptoms are non-typical for SFN - no burning pain, just extreme hypersensitivity sensitivity everywhere on my body to materials/fabrics. Materials that normal people aren't annoyed by feel like a scratching sensation on my skin that drives me crazy. Can't tolerate most clothing, and the seams on clothing are the WORST. The pain NEVER changes day-to-day, it just increases one level randomly each year. I'm barely able to wear any types of clothing anymore. I have ADHD, anxiety, exercise-induced asthma, acne, allergies, anemia, acid reflux, eustachian tube dysfunction, folliculitis, neuromas in both feet, and right now a lot of fatigue and high copper levels (likely unrelated to SFN though, working with a hepatologist to figure this out). Also take thyroid medication to tweak thyroid levels, even though they aren't out of range - since I'm only 26 just trying to get closer to what a normal 26 year old would have. Treating the anemia and hypothyroid and other conditions doesn't help the SFN at all. I've taken Lyrica, Vitamin B12 shots, Gabapentin, Abilify, Cymbalta, Trileptal, Clonidine, Desipramine, Naltrexone, Lamotrigine, Memantine, Mexiletine, Ketamine, Buprenorphine, Nortriptyline, Tizanidine, Tramadol, Lamictal, and had TMS (Transcranial Magnetic Stimulation) therapy. Starting to run out of meds to try. I'm ANA positive with RNP antibodies, have minor signs of Sjogrens but negative Sjogrens antibodies, high C50 but normal C3 and C4 complements, glucose at 90-100 usually, A1c at 5.6%, so borderline pre-diabetic but not enough for a diagnosis. Working with Stanford Autonomic Disorder program for some more antibody testing to see if we can find a cause. I'd really prefer not to run out of options and have to take opioids the rest of my life, but it's pretty terrifying to have the disease already in an extremely bad state when I'm only in my 20s. Any additional medication/treatment suggestions welcome. I would need a formal autoimmune diagnosis to get IVIG covered.

26 yo, Female. I was diagnosed with SFN through punch biopsy in the last year. My symptoms are non-typical for SFN - no burning pain, just extreme hypersensitivity sensitivity everywhere on my body to materials/fabrics. Materials that normal people aren't annoyed by feel like a scratching sensation on my skin that drives me crazy. Can't tolerate most clothing, and the seams on clothing are the WORST. The pain NEVER changes day-to-day, it just increases one level randomly each year. I'm barely able to wear any types of clothing anymore. I have ADHD, anxiety, exercise-induced asthma, acne, allergies, anemia, acid reflux, eustachian tube dysfunction, folliculitis, neuromas in both feet, and right now a lot of fatigue and high copper levels (likely unrelated to SFN though, working with a hepatologist to figure this out). Also take thyroid medication to tweak thyroid levels, even though they aren't out of range - since I'm only 26 just trying to get closer to what a normal 26 year old would have. Treating the anemia and hypothyroid and other conditions doesn't help the SFN at all. I've taken Lyrica, Vitamin B12 shots, Gabapentin, Abilify, Cymbalta, Trileptal, Clonidine, Desipramine, Naltrexone, Lamotrigine, Memantine, Mexiletine, Ketamine, Buprenorphine, Nortriptyline, Tizanidine, Tramadol, Lamictal, and had TMS (Transcranial Magnetic Stimulation) therapy. Starting to run out of meds to try. I'm ANA positive with RNP antibodies, have minor signs of Sjogrens but negative Sjogrens antibodies, high C50 but normal C3 and C4 complements, glucose at 90-100 usually, A1c at 5.6%, so borderline pre-diabetic but not enough for a diagnosis. Working with Stanford Autonomic Disorder program for some more antibody testing to see if we can find a cause. I'd really prefer not to run out of options and have to take opioids the rest of my life, but it's pretty terrifying to have the disease already in an extremely bad state when I'm only in my 20s. Any additional medication/treatment suggestions welcome. I would need a formal autoimmune diagnosis to get IVIG covered.

Hey Man, my name is Steve—I am 35 and have what they are calling “suspicious of SFN” so far everything looks normal regarding tests. My symptoms are not so bad yet but the is my second time having the feeling of needles in my skin. It’s rough. Also looking for answers and someone to talk to. I’m worried I’m going to be hit with the SFN idiopathic diagnosis—what’s the prognosis for that sort of thing?

thank you laura. how does steroids work.? what have been the side effects for you?
are they taken for a long time or just a short course/when i looked at the mass general/harvard research it looked like out patients got 1mg/kg/day x 4 weeks then a brief taper.

It seems most people with SFN talk about pain. I've never had pain. My symptoms are tingling and such tightness in the foot arch and the outside ankle that my balance is compromised and I don't feel my feet properly to walk. It is like trying to walk while your feet are asleep. The tingling is overwhelming and can travel up the legs. Currently I have assistance walking and cannot drive. Is this the same for anyone else and what is your treatment? Thank you.

Hello @retired123, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I have idiopathic small fiber peripheral neuropathy with only numbness and some tingling but no pain. I also have to wear compression socks which makes the tingling a little worse but so far at 78 I can still drive and walk but not very far. My walking problem is more to do with my lower back and having what I think is bent spine syndrome (BSS) which makes it difficult to stand up straight when walking and I tend to lean forward. I shared my story and what has helped me in the Member Neuropathy Journey discussion here: https://connect.mayoclinic.org/comment/310341/

There is another discussion which you might find helpful - Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/

Awhile back I saw a new device for people with diabetic neuropathy that helped them walk. The researchers came and talked to us at one of our Minnesota Neuropathy Association meetings before they had FDA approval and it was still under development - https://rxfunction.com/. It sounds like it could help a lot of people with symptoms similar to yours.

What type of walking assistance do you currently use?
https://youtu.be/J2OZczG_72E

Thank you for your information. I will look into all of it. In your post you mentioned a list of supplements and vitamins that have helped you. Could you share it, please? Thank you.