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Living with Neuropathy - Welcome to the group

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

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@pyrifera

Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms and legs. I thankfully have a very good neurologist. I have gotten some relief from the hyperesthesia in the last few months from 300mg Gabapentin enacarbil each morning and night, with 300mg Gabapentin in the middle of the day. I use CBD balm and take 30mg CBD in oil twice a day, which helps with the tremors. I wear padded gloves and padded socks to minimize the sensations on my hands and feet. Hoping to have a skin biopsy later this year to see if I can get a test that affirmatively says I have SFN instead of just a diagnosis by exclusion. Glad this community exists.

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Replies to "Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms..."

Welcome @pyrifera, It's good to hear you have found a neurologist that is helping you find some relief. You might also be interested in another discussion where members have shared their journey with neuropathy and what has helped them -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Other good sources of information to learn more about neuropathy are:
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Do you mind sharing your biggest challenge with neuropathy, the symptom that bothers you the most?

Hi! Welcome to the group as you start this journey. You mentioned wearing padded socks. I am searching for good ones to especially walk around the house with, and to sleep in so I can easily walk to the bathroom in the middle of the night. I can’t walk barefoot without discomfort, and I just haven’t found the right socks with padding in heels and toes. Do you have a recommendation for what works with you? Thanks, Debbie

I have done all the above and more for my neuropathy . I am just nearing my 70th birthday and always was told by doctors that there is no remedy or cure. I am on a zoom call with many people who have neuropathy once a month, and a few months ago a Dr. by the name of Jacoby in Scottsdale gave a presentation on small fiber neuropathy and how he and his colleges developed a procedure to operate and relieve the nerve pain. I am now in week three and to have my staples taken out of the areas in concern that the Dr. thought needed it the most. I have high expectations so far that the procedure was a success. Probably will not be able to make a full recovery review until a month or so. As of now I cannot believe the less pain I have in the leg and foot that was bothering me for the last 50 plus years. He considered me a severe case but felt he could make me a high percentage of relief . Looking forward to getting back into my Montana Mountains soon!