Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for pyrifera @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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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?

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Profile picture for pyrifera @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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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

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Hi, @dbeshears1 - I just saw these Bombas slipper socks advertised - maybe they'd be helpful for you? https://bombas.com/collections/womens-slippers

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Profile picture for runnergirl @runnergirl

Hi, @dbeshears1 - I just saw these Bombas slipper socks advertised - maybe they'd be helpful for you? https://bombas.com/collections/womens-slippers

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Thank you - I will look at them!

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Profile picture for Debbie @dbeshears1

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

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Hello Debbie, I posted about Bombas sock previously. I wear them as the gripper bottoms offer a light massage on my feet. They are well made and long lasting. I hang dry them to help them last longer.

I’m also wear the Bombas gripper slipper. The slippers are amazingly comfortable as well.

Athena

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I found the Bombas slippers to be too expensive at least for us to afford.

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Profile picture for runnergirl @runnergirl

Hi, @dbeshears1 - I just saw these Bombas slipper socks advertised - maybe they'd be helpful for you? https://bombas.com/collections/womens-slippers

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Just wondering if you’ve tried Thorlo thick socks, and if so, how they compare to Bombas? I used to run my races in Thorlos (not the thin socks) I wear old ones I have now as house socks, but they’re getting worn. I love Bomba’s charity matching sock program, but couldn’t easily tell from website how cushioned the heels and toes were - I just saw arch support info.

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@dbeshears1 - I like other brands for jogging. I just thought the Bomba's slippers would be a good option for around-the-house non-slip wear. I haven't purchased them for myself yet, so can't really give an opinion.

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Profile picture for pyrifera @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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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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damn, I'm so happy you have a shot at getting back to the mountains. they're waiting for you.

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