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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@julie11

Hello! I've been diagnosed with Small Fiber (Poly-) Neuropathy. I have pain due to sensory symptoms (mostly aches and shock-like pains) as well as autonomic effects (gut pain, esp. at night, from Slow Transit Constipation, STC). I'm in a local pain support group, which is helpful. I also take Cymbalta for the sensory nerve pain and use medical cannibis to help me get to sleep. The hardest part is finding good medical care. It took me three years, numerous specialists, and a provisional self-diagnosis using info from the web to get to the SFN testing. I tried to schedule a follow-up appointment with my gastroenterologist in May 2022, and was told that her first opening is in Sept. 2023. Nobody (except the sympathetic PCP it took me years to find) wants to prescribe opioids, even when badly needed. And while there is a research literature on a connection between SFN and STC, the specialists I see don't both to look at it. And I have good insurance and live a a big city known for its excellent medical care! I'm guessing its even worse elsewhere.

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Replies to "Hello! I've been diagnosed with Small Fiber (Poly-) Neuropathy. I have pain due to sensory symptoms..."

Welcome Julie @julie11, Sorry you haven't been able to find much help from the specialists you see. It can be troubling when you find research information showing a connection but the doctor doesn't seem interested to try and help. There is another discussion on STC that I'm not sure you've seen but it might provide some suggestions:

-- Slow transit constipation and surgery: https://connect.mayoclinic.org/discussion/slow-transit-constipation-and-surgery/

I'm guessing you have done a lot of research to find things that might help. Have you seen the list of complementary and alternative treatments some neuropathy patients have found helpful on the Foundation for Peripheral Neuropathy site here? - https://www.foundationforpn.org/treatments/