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Idiopathic Small Fiber Neuropathy Research
Neuropathy | Last Active: 1 day ago | Replies (141)Comment receiving replies
Hello @solobeee, Welcome to Mayo Clinic Connect. Unfortunately, small fiber PN is not a condition I would wish on my worst enemy so to speak. I'm glad you found Connect where you can learn what other members have shared helps them and hopefully find some relief for the pain. There are a couple of discussions you may wish to join to read the experience of other members including myself. I have small fiber PN among other conditions but I only have numbness without the pain. My neurologist said I'm in the 20% group of folks with PN who don't have the pain.
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/405325/
- Living with Neuropathy – Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/
- Illusive Diagnosis, Pain Increasing: https://connect.mayoclinic.org/discussion/illusive-diagnosis-pain-increasing/
What helps me is taking each day one step at a time and learning as much as I can by researching my condition and reading everything I can find on new research and treatments. Are you able to share a little about any treatments you've tried or thought about trying?
Replies to "Hello @solobeee, Welcome to Mayo Clinic Connect. Unfortunately, small fiber PN is not a condition I..."
I know this is a response to a post from last year, but I am new to this group. Do you, or anyone know of someone who has urinary incontinence due to SFPN? My research has shown that this can be caused by SFPN, but I have yet to connect with someone with this condition...And what might be done about it? Thanks to everyone for any help.
Dear John, I saw this old post of yours and, as I also have SFPN with numbness ONLY, I wondered if you have found anything that improves your condition since you posted last. One neurologist opined that "it's the flecainide" (which I only take as needed for an atrial fib episode, not daily). I also have a long history of ulcerative colitis, and certain research indicates maybe 30% of people with inflammatory bowel diseases get PN. I guess we have to say we are the "lucky ones" who don't have pain, but... it is still an uncomfortable and unpleasant condition. A podiatrist put me on Metanx (an algal oil) which I'm trying. Since no one talks about the "numbness only" type of PN, I am hoping you may have some news from the last 4 yrs since you wrote. Many thanks, John! Blesssings, Diane
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I’m new to this diagnosis, about 13 months. The pain is increasing as is my dosage of gabapentin! I’m not finding much encouragement reading this sight regarding treatment nor research. I’m going to naively ask has anyone found any relief from a diet? I’ve completely stopped drinking alcohol, 10 months even though this wasn’t an issue. I’m a celiac / hypothyroidism gal tested positive by skin graft.
Also are any of you having gastric issues?
Thanks!