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DiscussionJust Diagnosed with Small Fiber Neuropathy
Neuropathy | Last Active: Aug 12 10:26am | Replies (236)Comment receiving replies
Replies to "Hello @nlangmack, Welcome to Connect, an online community where patients and caregivers share their experiences, find..."
@johnbishop, I watched the TED Talk last night and found it incredibly moving. I’ve been thinking about Ms. Brea a lot today, her strength and resolve to help others with ME and bring more awareness to this devastating illness. I think that the attention being paid to Covid long-haulers will reveal the need for greater research and provider training into ME and other autoimmune diseases.
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.