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Just Diagnosed with Small Fiber Neuropathy
Neuropathy | Last Active: Jul 4, 2023 | Replies (235)Comment receiving replies
Thanks for the suggestions! Since it's been a 5-year path to diagnosis I'm pretty familiar with the disease, but continue to find it strange that I'm the only person I know of with skin sensitivity as the primary symptom (having looked at a lot of forums). The worst symptom is just sensitivity to clothing/seams. I also have a hypersensitivity to room temperatures (eg 73 is way too hot for me and I get nauseous), but the clothing thing is by far the worst because there's so few pieces of clothing left that I can wear. It sucks that there are truly no treatments for SFN - only pain management (which doesn't seem to be working for me). I'll definitely keep an eye on google scholar.
Replies to "Thanks for the suggestions! Since it's been a 5-year path to diagnosis I'm pretty familiar with..."
Hi @nlangmack, I too have extreme hypersensitivity to clothing, temperatures, room air or anything that even touches my skin. It is very very frustrating and the only thing that helps me (almost a catch-22, honestly) is constant compression. Tubigrip has been the best so far personally, tho there are many options out there w/ many fabrics and compression levels based upon your individual needs. The second thing that's really helped me is kinesio tape (medium strength). Many days I am rolling up my sleeves or putting my arms where they are out of touch from anything. My inner elbows are SO sensitive that I cannot even rest them or touch anything. I even self-tattooed "Don't Touch" on my left arm to hinder others from casually grabbing. Pain management for me as well has been unsuccessful, and the pain continues to change/increase daily. I definitely can relate and sympathize with your frustrations...so so sorry you are suffering. I hope permanent relief comes your way soon. Keep your head up, and know you are not alone in this fight! Neuropathy is one of the ugliest invisible diseases there is!
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I found Connect when I was searching for answers because I was pretty disappointed with the treatment options or non options that I had available until I finally found some supplements that really do help. I was taking most of them after doing research on Google Scholar but didn't have a clue on amounts, best brands for quality, etc. until I found a Facebook group who put together a list so we could order them from Amazon. After a few years the groups leader cut a deal with a local pharmaceutical company to package the supplements into fewer pills which helped a lot.
I posted my story in the following discussion along with the supplements I take which have helped reduce and I think stop the progression of my neuropathy which I have had for over 20+ years. Other members with pain have been helped considerably and no long have to take meds to manage the pain.
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/