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Just Diagnosed with Small Fiber Neuropathy

Neuropathy | Last Active: Aug 12 10:26am | Replies (236)

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@johnbishop

Hello @nlangmack, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. It sounds like you certainly have a lot going on. I only have numbness with my idiopathic small fiber neuropathy. I think that it's good that you are doing your own research to learn as much as you can about your health condition. One of my favorite search tools for medical research type information is Google Scholar (https://scholar.google.com/). Another good resource for neuropathy information is Neuropathy Commons (https://neuropathycommons.org/).

I found an article that discusses some of your symptoms of sensitive skin that sounds a lot like you describe.
"Tactile allodynia: This is pain caused by touch. This can include clothing pressing against the skin (especially the tighter parts of clothing, such as ..." -- Allodynia: A Rare, Distinct Type of Pain in Fibromyalgia and ME/CFS: https://www.verywellhealth.com/allodynia-definition-and-types-fibromyalgia-715929

There are a couple of discussions that could have some helpful information also based on the article above.
-- Allodynia: https://connect.mayoclinic.org/discussion/alloydinia/
-- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

The second discussion has a link to a TED Talk by Jennifer Brea, that seems to relate to a lot of your symptoms so may be helpful -- What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I know it must be terribly difficult for you. Are you able to share which of your symptoms is the worse?

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Replies to "Hello @nlangmack, Welcome to Connect, an online community where patients and caregivers share their experiences, find..."

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.

@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.