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.

Hi Mark,

I also have neuropathy in my feet and ankles. I've tried Gabapentin but it is not affective for me. I also have severe Restless Legs and Myoclonus and wonder if you have this also? I`d appreciate any information anyone has about treatment of Restless Legs at the Mayo Clinic and the cost if possible.

Thanks,
ShoeBag Lady

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@marigest

Has anyone tried Vitamin B 12? prescribed on FOX from Dr. Barbara O'Neil? Is it a scam? I have such burning in my right foot. I've used Gabapetin (side effects make me muddled) and Capsasion (in the summer it burns my feet if I wear flip flops). Tired of burning in the day with Capsasion, but not at night???? Appreciate any comments.

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These are the things my husband is taking
B COMPLEX CAPS
LYRICA 100 mg
Feet massage with BLACK SEED OIL
Wears low cut diabetic socks all the time
And when he has a flair up before it gets really bad he applies a 4 % LIDOCAINE cream or spray
Hope something helps

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@shoebaglady

Hi Mark,

I also have neuropathy in my feet and ankles. I've tried Gabapentin but it is not affective for me. I also have severe Restless Legs and Myoclonus and wonder if you have this also? I`d appreciate any information anyone has about treatment of Restless Legs at the Mayo Clinic and the cost if possible.

Thanks,
ShoeBag Lady

Jump to this post

Hello @shoebaglady, Welcome to Connect. Here is some information from Mayo Clinic on the diagnosis and treatment of Restless Leg Syndrome - https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/diagnosis-treatment/drc-20377174.

There is another discussion that mentions restless legs and myoclonus that might be helpful to scan through:
-- 1 year later: involuntary limb movements, toe twitching, VERY jittery:
https://connect.mayoclinic.org/discussion/1-year-later-involuntary-limb-movements-toe-twitching-very-jittery/

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@markherbert70

Hi all, thank you for letting me join your group. I have peripheral neuropathy in my hands and feet, causing considerable discomfort. I am on a very high dose of Gabapentin, and this is helping slightly. I've been told about and also researched red light therapy. Has anyone got any information/experience with this, good or bad? As I'm writing this, I'm struggling with my hands, so please excuse the short message.

Thanks Mark

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Welcome Mark @markherbert70, Sorry to hear your treatment is not helping much with your neuropathy symptoms. Here are a couple of discussions on red light therapy but there are many if you want to search "red light therapy" in the search box at the top of any Connect page.

-- Anyone tried using red light therapy?:
https://connect.mayoclinic.org/discussion/anyone-tried-using-red-light-therapy/
-- Medical grade red light therapy:
https://connect.mayoclinic.org/discussion/medical-grade-red-light-therapy/
Have you seen the Foundation for Peripheral Neuropathy website? They have a lot of great information on the different treatments, as well as some tips for vetting the different neuropathy cures being offered on the market.
-- Treatments: https://www.foundationforpn.org/treatments/
-- Vetting Information on Peripheral Neuropathy: https://www.foundationforpn.org/wp-content/uploads/2025/01/VettingPNinfo.pdf

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I have also been living with the effects of neuropathy in my hands, legs and feet for several years now. I was admitted into a neuro and brain program in Mesa, CA, and they connect with my neurologist at Mayo. I also decided Gabapentin was doing me no favors health wise and I stopped taking the medication. I do still take Cymbalta. My OT and PT people at the neuro and brain clinic have started a process called scrapping on my hands, feet and legs to help stimulate my nerves. This therapy has primarily been used for MS patients but seems to be working for neuropathy as well.

There are several You Tube videos on the process. It is actually quite simple. You need a butter knife and lotion, like Aquaphor. Apply a thick amount of lotion and scrap your hands gently but firmly with the DULL side of the knife. I find for me every other day seems to be bringing my hands back to life. Just starting on my feet and legs, and hoping for great results!

The less drugs and more exercise with yoga bands or standing at the kitchen counter doing feet exercises helps as well. I also have gone to wearing Hike shoes but you need the extra insert they sell for any relief.

My experiences and I truly understand the path you are on. I hope maybe one little thing helps!

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