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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 1 day ago | Replies (6021)Comment receiving replies
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.
Replies to "Hello all, 38yo newly diagnosed with small fiber neuropathy with hyperesthesia and tremors in my arms..."
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!
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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?