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Small Fiber Neuropathy: What helps?
I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.
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I'm so happy it has helped you, it gives me hope. First time I'm hearing about it, I have seen at least 7 neurologists (I have moved many times because of hubby's work) and no one had mentioned it. I will bring it up on my upcoming appointment. Like you, nights are the worst but lately days are unbearable too. It now feels that my entire body is on fire 24/7. I'm constantly swollen, probably because I don't sweat. Many blessings 🙌
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1 ReactionI lived with most of those symptoms for years and was told over and over that it was either on my head and that it was fibromyalgia. I was referred to new Dr and he finally ordered skin biopsy and diagnosed me. The symptoms can be related to SFN but also other things. I also have Hashimoto's and because Dr's insited in was in my head, I'm not sure what came first. I too lost a lot of weight 40lbs in 6 months, without trying. My recommendation, if your Dr is not listening, seek 2nd opinion. Good luck and I hope you find answers.
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3 ReactionsI've been on the protocol since Sept 2016 have some feeling returned to my feet but I still have numbness and some tingling. I do think it's stopped the progression but it's only my opinion and since I didn't have a nerve skin punch biopsy when I was diagnosed there is no evidence that the progression is stopped. For others on the protocol it's actually allowed them to get pain relief without the seizure medications normally used to treat neuropathy pain.
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2 ReactionsWelcome to Mayo Clinic Connect. Thank you for sharing your experience.
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.