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.

@ray666

Hi, Mike. I'm not sure I got mine figured out. I did have one lucky break at the time of my knee op and that was to be invited to be part of a federal study to try to find out why our quads quicker and to a greater degree than other leg muscles get weak in the wake of knee replacement surgery, For a month before and a month following the surgery I went to a hospital lab where I was made to exercise my both legs so that my quad strength could be recorded. I credit that fed study with keeping my legs, including the one with the replacement, in at least half-good shape. Today, my legs, and in particular my knees, still feel pretty good –– except for arthritis! That seems to get a little worse every year. I figure that the time-release diclofenac that my doctor gave me is at least helping to keep arthritis from getting too painful. These days I miss the pleasure of walking more than anything. Walking isn't much fun anymore. –Ray

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Hi, Ray and Mike @mikem75 - My husband lost the ability to run several years ago. He enjoyed running as part of his overall workout. He played a lot of sports when younger, mainly football then TKD into his 40's, and has been a floor installer by trade... you see where I'm going with this? The knees never stood a chance!

He'll be 60 this year and had a knee replacement 2 years ago followed by an unfortunate revision on same knee 1 year ago. There were complications during the revision which left his bend limited. Now he is hoping to at least get enough bend to ride his bike.

He also says how much he misses running. One thing I'll throw out is that he does enjoy kayaking. Not sure if that is possible for either one of you gents, pretty low getting in and out. It always stinks giving up things you love. I relate and have had to look outside the box for new joys, as well.

I enjoy walking but am time limited so I like to visit my nearby park and rest on the bench to watch the kids and pets play. Have you found any other "void fillers" (besides biking) that you've tried and found helpful? Maybe something to give the feet a moderated break?

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@rwinney

Hi, Ray and Mike @mikem75 - My husband lost the ability to run several years ago. He enjoyed running as part of his overall workout. He played a lot of sports when younger, mainly football then TKD into his 40's, and has been a floor installer by trade... you see where I'm going with this? The knees never stood a chance!

He'll be 60 this year and had a knee replacement 2 years ago followed by an unfortunate revision on same knee 1 year ago. There were complications during the revision which left his bend limited. Now he is hoping to at least get enough bend to ride his bike.

He also says how much he misses running. One thing I'll throw out is that he does enjoy kayaking. Not sure if that is possible for either one of you gents, pretty low getting in and out. It always stinks giving up things you love. I relate and have had to look outside the box for new joys, as well.

I enjoy walking but am time limited so I like to visit my nearby park and rest on the bench to watch the kids and pets play. Have you found any other "void fillers" (besides biking) that you've tried and found helpful? Maybe something to give the feet a moderated break?

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Thx winney,ray,your husband had a bad knee repl. Too? Dr. Told me 1 knee replacement. IN 1000 have problems(WRONG). GOT APPT. W/MY GP ON THURS.ONCE A RUNNER I JUST DON'T GET THE WORKOUT I USE TO. BUT YOUR HUSBAND IS STILL YOUNG. Feet are numb,cold,tingling and takes a lot to walk,and get up from sitting. Rambling on,think I'm anxious for Thursday. Mike

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@rwinney

Hi, Ray and Mike @mikem75 - My husband lost the ability to run several years ago. He enjoyed running as part of his overall workout. He played a lot of sports when younger, mainly football then TKD into his 40's, and has been a floor installer by trade... you see where I'm going with this? The knees never stood a chance!

He'll be 60 this year and had a knee replacement 2 years ago followed by an unfortunate revision on same knee 1 year ago. There were complications during the revision which left his bend limited. Now he is hoping to at least get enough bend to ride his bike.

He also says how much he misses running. One thing I'll throw out is that he does enjoy kayaking. Not sure if that is possible for either one of you gents, pretty low getting in and out. It always stinks giving up things you love. I relate and have had to look outside the box for new joys, as well.

I enjoy walking but am time limited so I like to visit my nearby park and rest on the bench to watch the kids and pets play. Have you found any other "void fillers" (besides biking) that you've tried and found helpful? Maybe something to give the feet a moderated break?

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Hi, Rachel

Have I found any new "void fillers"? Nothing yet, nothing that quite compares to walking. My partner is always asking when we'll start some sort of low-intensity walking "program" (she's a vigorous walker), but I keep postponing, putting off Day One, and changing the planned Start Day. My favorite excuse is when spring arrives for good! Well, spring seems to have arrived—or will be arriving tomorrow (!!!). I feel threatened! 🙂

Ray

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@ray666

Hi, Rachel

Have I found any new "void fillers"? Nothing yet, nothing that quite compares to walking. My partner is always asking when we'll start some sort of low-intensity walking "program" (she's a vigorous walker), but I keep postponing, putting off Day One, and changing the planned Start Day. My favorite excuse is when spring arrives for good! Well, spring seems to have arrived—or will be arriving tomorrow (!!!). I feel threatened! 🙂

Ray

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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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Hello! I am 65 years old and have had idiopathic neuropathy in my feet for 23 years. I use The Rebuilder to manage my pain. I am interested in finding out others manage theirs. Does anyone use CBD!

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@gmbuckhalter

Hello! I am 65 years old and have had idiopathic neuropathy in my feet for 23 years. I use The Rebuilder to manage my pain. I am interested in finding out others manage theirs. Does anyone use CBD!

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Welcome @gmbuckhalter, I also have idiopathic small fiber peripheral neuropathy and have had it since my 50s (now 80) but only have the numbness and some tingling and no pain. Myself and others have shared our neuropathy journey and what has helped us in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

Here is a search of Connect listing discussions and comments from others on using CBD for neuropathy - https://connect.mayoclinic.org/search/discussions/?search=cbd%20for%20neuropathy.

Another great source for information on living well with neuropathy is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

Are you able to share a little more about your diagnosis and any treatments you have tried?

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@johnbishop

Welcome @gmbuckhalter, I also have idiopathic small fiber peripheral neuropathy and have had it since my 50s (now 80) but only have the numbness and some tingling and no pain. Myself and others have shared our neuropathy journey and what has helped us in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

Here is a search of Connect listing discussions and comments from others on using CBD for neuropathy - https://connect.mayoclinic.org/search/discussions/?search=cbd%20for%20neuropathy.

Another great source for information on living well with neuropathy is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

Are you able to share a little more about your diagnosis and any treatments you have tried?

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I have it in my feet. They hurt and burn a lot

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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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@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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Good morning, julbpat (@julbpat)
I couldn't have described it any better! That's exactly how I feel when I do the "bold" thing and go for a walk. It wasn't that many years ago when going for a walk –– any kind of walk, from a mile-and-a-half ramble to my local supermarket to a 17-mile trek on the Continental Divide Trail. Those days are gone. As I have told my partner and my friends –– especially my old trekking buddy friends –– walking just isn't fun anymore. I still do it, in a sadly limited sort of way, but now I go at it with a sense of "push through;" I do it strictly because I believe I must, that even my limited walking (stretching, stationary bike riding, etc.) is pretty much all I've got left between me and severe worsening of my PN.
Here's wishing you a cheerful day!
Ray

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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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After taking Gabapentin and Lyrica, I switched to Tegretol(carbamazepine). It has worked very well for me. I take 1000mg/day.

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