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.

@julbpat

One of my favorite activities for at least 20 years was a brisk 2 mile morning walk. Well, I CAN walk now of course. I could even run if something was chasing me! But the pleasure? That’s gone. It’s more like a grim task. Every tiny muscle fiber from my hips to my toes hurts. And the pain intensifies as I proceed. I finally have to find a place to sit - a stranger’s porch? So I could take a walk in my neighborhood on this beautiful Spring day. But why? Same with biking. I went a year without getting on my bike. I used to take a ride in my lovely neighborhood almost every evening in the summer. I tried it a few months ago. Oh my God. This time not only my lower body hurt, but my hands, shoulders, neck …
So off I go to the indoor pool! I do some pool calisthenics and swim laps. For years I said “please don’t tell me I have to swim for exercise”, yet here I am.

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But, swim nonetheless! I give you credit for exercising, no matter what way and not giving up on your body or yourself. Shall I call you "Diana Nyad"? Way to go!

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I am an 80 year old Vietnam Veteran and way past the 70,000 mile warranty. I have tried everything I come across on the Internet and all have the same pitch to me- all find some type of exotic plan or herb that will surely cure people like me with severe PN and it now appears my blood sugar is way up- so things are not looking good for me. I try exercise but that only seems to inflame the nerves and muscles.
I have tried Nerve Savior and it does not work at all- only makes things worse if you can believe that and they don't respond to communications for refunds. At my age I believe one just has to count their blessings as I do each and every day and endure to horrific pain as I am totally allergic to opiates and most drugs like Gabapentin, Pregabalin, and Flexitine. Amazing 3000 years of Chinese Medicine and no one has found help with pain control for PN. Hang in there and Semper Fi.

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@leelou03

Hello,, my neuropathy started about a year ago, in my feet. They burn. My neurologist just upped my cymbalta, That's not working. I take Turmeric, it helps some. Id like to find something else. I can't take Gabapentin. Makes me goofier lol

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Hi. My Neuropathy manifests itself in the underside of my toes and the effects are burning and numbing sensations. Is this similar to your condition?

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Have been having leg pain/numbness primarily from knees down. Have arthritis but the primary issue is peripheral neuropathy. On Pregabalin but still have leg and feet pain. Wondering if anyone has had experience with gummies. If so I have a lot of follow up questions. Thanks

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Has anyone have compression neuropathy on their feet? After my knee repl. 18 months later I took up walking. I bought new Hokas online and I bought 1/2size to small. I SCREWED UP MY FEET,WENT NUMB,PAIN. MONTHS LATER I BOUGHT RIGHT SIZE BUT PUT DR.SHOLLS INSERTS WITH THE ORIGINAL INSERTS. WALKED(PUSHED) FOR A YEAR HOPING NUMBNESS AND PAIN WOULD GO A W AY. NOPE ANYONE EXPERIENCE SIMARLAR.....

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@mikem75

Has anyone have compression neuropathy on their feet? After my knee repl. 18 months later I took up walking. I bought new Hokas online and I bought 1/2size to small. I SCREWED UP MY FEET,WENT NUMB,PAIN. MONTHS LATER I BOUGHT RIGHT SIZE BUT PUT DR.SHOLLS INSERTS WITH THE ORIGINAL INSERTS. WALKED(PUSHED) FOR A YEAR HOPING NUMBNESS AND PAIN WOULD GO A W AY. NOPE ANYONE EXPERIENCE SIMARLAR.....

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Hello @mikem75, I think there are a lot of members with neuropathy caused by nerve compression or entrapment. I would think wearing shoes a half size too small would cause blisters or sores on your feet with pain more than numbness. What has helped me is buying shoes with wide toe boxes since I have hammertoes on both feet along with my neuropathy.

Myofascial Release Therapy (MFR) may be something that will help with neuropathy caused by nerve entrapment or compression from what I've read. You might want to checkout this discussion started by @jenniferhunter to learn what others have shared:
--- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@waterloobob

Have been having leg pain/numbness primarily from knees down. Have arthritis but the primary issue is peripheral neuropathy. On Pregabalin but still have leg and feet pain. Wondering if anyone has had experience with gummies. If so I have a lot of follow up questions. Thanks

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Welcome @waterloobob, There is another discussion that you might want to check out on gummies for neuropathy.
--- New gummy’s for neuropathy: https://connect.mayoclinic.org/discussion/new-gummys-for-neuropathy/

If you haven't already seen this site, you might find it helpful for learning more about neuropathy and treatments:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/

How long have you had the peripheral neuropathy?

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@johnbishop

Welcome @waterloobob, There is another discussion that you might want to check out on gummies for neuropathy.
--- New gummy’s for neuropathy: https://connect.mayoclinic.org/discussion/new-gummys-for-neuropathy/

If you haven't already seen this site, you might find it helpful for learning more about neuropathy and treatments:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/

How long have you had the peripheral neuropathy?

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Thanks for your reply and the links, which I will certainly check out.

As for when the neuropathy began I can't be specific. I started having mobility issues seven years ago. I had an EMG May 2022 which didn't show anything. A new neurologist advised repeating the EMG which I took earlier this month. This time it showed diabetic peripheral neuropathy.

Again, thanks.

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Hello. At age 65, I was recently diagnosed with chronic idiopathic axonal polyneuropathy. After trying to get answers from my PCP why my feet were bothering me at night and wearing socks in bed so that I could sleep, as well as a detour with orthopedic insoles which only made me walk funny, I finally found a neurologist who tested and diagnosed me. Things are getting worse and I started applying lidocaine patches to the bottom of my feet to get rest at night. I expect that I will be put on medication at my follow-up appointment with the neurologist.

I eat pretty healthy and have been running 10 Marathons since 2013 (the Boston Marathon bombing initiated my running). Currently I am scheduled to run the Chicago Marathon in October. However, I do feel my feet more and more when I run and hope that I will be able to continue my training. Is there any evidence that running might further damage my nerves? Or is good to challenge myself by continuing to run?

My peripheral neuropathy journey has just started and I look forward to learning from others as well as sharing what works for me.

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I started applying Salonpas pain patches to the bottom of my feet for pain, and they do provide relief but my skin is so thin,when I pull them off,I also take off some of my thin skin, and then I’m bleeding and need bandaids!

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