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Small Fiber Neuropathy: What helps?
Neuropathy | Last Active: Jul 25 8:22am | Replies (285)Comment receiving replies
Sorry my life had been up in shambles lately. I haven’t really found any options for my neuropathy. The neurologist at mayo in Az told me it’s not a condition he will treat until they know the cause. Which knowing the cause is kinda impossible since I have so much else going on. I need to go back to the neurologist but won’t be doing that till I recover from my recent surgery.
Have you found anything useful or come across any ways to deal better?
Replies to "Sorry my life had been up in shambles lately. I haven’t really found any options for..."
ok, find another doctor. There is such a thing as idiopathic neuropathy and my neurologist says that is what I have and he treats it.
I have "idiopathic" small fiber peripheral polyneuropathy. I don't think my condition is idiopathic at all. I've had a few of the symptoms for years since 1989, which was then diagnosed as fibromyalgia.
However, in 2020 I asked my then PCP how to taper off long term benzodiazepines (always taken as directed). H¹er recommendation was to stop benzodiazepines without taper, to "just stop."
My "fibromyalgia" symptoms severely and immediately worsened to what they are now. I'm very sure the benzos damaged me and their abrupt cessation without taper kicked in the SFPN.
My diagnosing neurologist did not seem to associate the cold turkey benzo withdrawal with the sudden onset of worsening of existing symptoms and the many new ones, despite the obvious connection.
I too now have new bladder and bowel issues, worsened hearing that now require hearing aids, increased anxiety, hypersensitivities to smell, sounds, lights, clothing textures, Nd difficulty regulating my temperature. I am now hypothyroid (subclinical) and have read of the connection between that and SFPN.
I take supplements that are meant to help the nervous system. I avoid prescription drugs as much as I can, though I do take occasional sumatriptan for the migraines. Low dose Ritalin every week or so when i really need focus (I'm AuDHD). Gabapentin helps reduce the nerve pain a bit, but I take less than half the dose my doctor recommends. Capsaicin cream help to reduce burning in neck, shoulders, arms. My biggest help for burning is my near constant use of ice packs on burning ateas.
I trying to figure this out on my own, and hoping perhaps Mayo can help.
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Hi Brie
Please consider going to see Dr Todd Levine, a neurologist in Phoenix who knows a vast amount re SFN. PLUS he is fabulous and really a good listener. His staff is great too. He has authored a book with several other docs (including Ann Oaklander) re SFN. Good luck.!