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Profile picture for Colleen Young, Connect Director
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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 Ray Kemble
Ray Kemble | @ray666 | Feb 10 6:25pm
In reply to @jum13 "Hi, just found this group today. I have had PN for a couple of decades. Mine..." + (show)
Profile picture for jum13 @jum13

Hi, just found this group today. I have had PN for a couple of decades. Mine is alcohol, 5 years sober now. I have it in my fingers and from my feet to my waist. 5 years ago I began exercising, last year I averaged 8 miles per day on my feet. This did wonders for balance and not walking with clukiness. I could move normally. Recently I have had to take days off from the routine. I noticed that in less than two days my legs are weak and I’m walking clunky and the tightness is at a higher level. I’m wondering if I am going to have to move 8 miles a day the rest of my life or become in a wheelchair? Does anyone else find that big a difference between exercise and not exercising? Also gabbapentin does nothing but make me forget. Ha ha

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Hi, jum13 (@jum13)

Welcome to Connect! Pull up a chair and make yourself at home. I'll keep my reply short as I know you'll get better answers to your questions in short order than I could possibly give––although our situations are not entirely dissimilar. My neuropathy is large-fiber polyneuropathy, which means, for the most part, I'm blessed with having no pain but big, big balance issues: getting around safely, especially outdoors, is a study in deep concentration. I also have a history of alcohol, but I quit something like 35 years ago, so long ago that I no longer count the years. The neurologist who spotted my alcohol abuse (a "shadow," she called it, on a brain MRI)was pretty positive that my history with alcohol had nothing to do my neuropathy today. You see, that's it, too: my neuropathy is idiopathic, meaning "cause unknown." I used try to problem-solve the cause, but gave up trying. Nowadays I concentrate on trying to prevent my balancing from getting worse, chiefly by doing all I can to strengthen my legs. I'll stop at this point. I'll be watching with great interest the replies you get––and I'm sure you'll get many!

Cheers!
Ray (@ray666)

REPLY
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Feb 11 7:37am
In reply to @jum13 "Hi, just found this group today. I have had PN for a couple of decades. Mine..." + (show)
Profile picture for jum13 @jum13

Hi, just found this group today. I have had PN for a couple of decades. Mine is alcohol, 5 years sober now. I have it in my fingers and from my feet to my waist. 5 years ago I began exercising, last year I averaged 8 miles per day on my feet. This did wonders for balance and not walking with clukiness. I could move normally. Recently I have had to take days off from the routine. I noticed that in less than two days my legs are weak and I’m walking clunky and the tightness is at a higher level. I’m wondering if I am going to have to move 8 miles a day the rest of my life or become in a wheelchair? Does anyone else find that big a difference between exercise and not exercising? Also gabbapentin does nothing but make me forget. Ha ha

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Hi @jum13, I would like to add my welcome along with @ray666 and others. I'm glad to see that you have started on your journey to learn more about neuropathy and what helps. There are many discussions on different topics in the Neuropathy Support Group here on Connect that might be good to scan through - https://connect.mayoclinic.org/group/neuropathy/.

I can't walk any distance but I do have a recumbent exercise bike of sorts (Teeter FreeStep cross trainer) that I try to use 30 to 45 minutes a day and I find if I go for a day or two without riding the bike that my limited walking is even worse. So I do think there is something to that saying "motion is lotion".

Have you looked into specific exercises that can help build up your leg strength?

REPLY
2 replies
Profile picture for Ray Kemble
Ray Kemble | @ray666 | Feb 11 11:02am
In reply to @johnbishop "Hi @jum13, I would like to add my welcome along with @ray666 and others. I'm glad..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi @jum13, I would like to add my welcome along with @ray666 and others. I'm glad to see that you have started on your journey to learn more about neuropathy and what helps. There are many discussions on different topics in the Neuropathy Support Group here on Connect that might be good to scan through - https://connect.mayoclinic.org/group/neuropathy/.

I can't walk any distance but I do have a recumbent exercise bike of sorts (Teeter FreeStep cross trainer) that I try to use 30 to 45 minutes a day and I find if I go for a day or two without riding the bike that my limited walking is even worse. So I do think there is something to that saying "motion is lotion".

Have you looked into specific exercises that can help build up your leg strength?

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Good morning, John (@johnbishop)

I found the most telling words in your reply to @jum13 to be: "I find if I go for a day or two without riding the bike that my limited walking is even worse." Those words certainly had impact on me. I felt, for any reading these posts, your words were well worth highlighting. I can pomie you this: I'llnot let this day go by without a half-hour's ride on my recumbent bike. 🙂

Here's wishing you and @jum13 and all Connect'ers reading this a good, good day!
Ray (@ray666)

REPLY
Profile picture for blowerk1216
blowerk1216 | @blowerk1216 | Feb 11 3:12pm
In reply to @billurzada "I am 78 years old going through 16 th year with neuropathy and tired of a..." + (show)
Profile picture for billurzada @billurzada

I am 78 years old going through 16 th year with neuropathy and tired of a new cure every day.i tried lazer,acupuncture and many many false items.my feet are now going numb at night which is very painful.is the end game to have them removed?took 9 gabepentin per day for two years and no change

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@billurzada have you had any steroid injections?

REPLY
Profile picture for jum13
jum13 | @jum13 | Feb 11 4:07pm
In reply to @johnbishop "Hi @jum13, I would like to add my welcome along with @ray666 and others. I'm glad..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi @jum13, I would like to add my welcome along with @ray666 and others. I'm glad to see that you have started on your journey to learn more about neuropathy and what helps. There are many discussions on different topics in the Neuropathy Support Group here on Connect that might be good to scan through - https://connect.mayoclinic.org/group/neuropathy/.

I can't walk any distance but I do have a recumbent exercise bike of sorts (Teeter FreeStep cross trainer) that I try to use 30 to 45 minutes a day and I find if I go for a day or two without riding the bike that my limited walking is even worse. So I do think there is something to that saying "motion is lotion".

Have you looked into specific exercises that can help build up your leg strength?

Jump to this post

@johnbishop
Thanks for the information. I do heavy lifting, squats, leg presses, etc. Everything was working, until I took a couple days off. As soon as I get fatigued my legs are stiff walking and uncoordinated. I’ll keep plugging and see, but I hate talking to the neurologist (dummies, ha) and I certainly don’t want to go back to parking next to the cart coral so I can get a “walker “ into the store.

REPLY
1 reply
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Feb 11 4:36pm
In reply to @jum13 "@johnbishop Thanks for the information. I do heavy lifting, squats, leg presses, etc. Everything was working,..." + (show)
Profile picture for jum13 @jum13

@johnbishop
Thanks for the information. I do heavy lifting, squats, leg presses, etc. Everything was working, until I took a couple days off. As soon as I get fatigued my legs are stiff walking and uncoordinated. I’ll keep plugging and see, but I hate talking to the neurologist (dummies, ha) and I certainly don’t want to go back to parking next to the cart coral so I can get a “walker “ into the store.

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@jum13 - Now that made me smile! Here I thought I was one of the only ones that parked near the cart corral to pick up a walker 🙃

REPLY
Profile picture for bingo2a
bingo2a | @bingo2a | Feb 11 7:20pm
In reply to @blowerk1216 "@bingo2a is the ALA helping at all?" + (show)
Profile picture for blowerk1216 @blowerk1216

@bingo2a is the ALA helping at all?

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@blowerk1216 Hi, no m, the ALA doesn’t seem to be doing anything. Have you had any experience with R-ALA?

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1 reply
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bingo2a | @bingo2a | Feb 11 7:25pm

Has anyone had any success with R-Alpha Lipoic Acid and if so, what dose are you taking? I asked my neurologist if I should take it instead of Alpha Lipoic Acid and he didn’t think it would help. I am currently taking Alpha Lipoic Acid and it doesn’t seem to be having any positive effects.

REPLY
Profile picture for blowerk1216
blowerk1216 | @blowerk1216 | Feb 11 9:22pm
In reply to @bingo2a "@blowerk1216 Hi, no m, the ALA doesn’t seem to be doing anything. Have you had any..." + (show)
Profile picture for bingo2a @bingo2a

@blowerk1216 Hi, no m, the ALA doesn’t seem to be doing anything. Have you had any experience with R-ALA?

Jump to this post

@bingo2a I am using R-form ALA, which is the recommended type

REPLY
1 reply
Profile picture for blowerk1216
blowerk1216 | @blowerk1216 | Feb 11 9:28pm

Has anyone had a steroid injection for neuropathy pain?

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