1. < Neuropathy
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.

sullivan3401 | @sullivan3401 | Mar 30, 2023
In reply to @pinkton "I have neuropathy which is getting worse lately. Does anyone out there have good exercises to..." + (show)
@pinkton

I have neuropathy which is getting worse lately. Does anyone out there have good exercises to help with circulation. Also what medications are everyone happy with in helping with the burning and coldness in their feet, if any. Also having trouble with walking and balance lately. Any recommendations or info to help with this situation ?

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I am on 1200 mg gabapentin 3 times a day with 50 mg of amitriptyline at bedtime.

REPLY
Amanda Roe | @amandajro | Mar 30, 2023
In reply to @lorrainehackett "Have idiopathic peripheral Neuropathy for 15 years but lately progressing quickly. Any way to stop itm" + (show)
@lorrainehackett

Have idiopathic peripheral Neuropathy for 15 years but lately progressing quickly. Any way to stop itm

Jump to this post

Hello @lorrainehackett, and welcome to Mayo Clinic Connect. I wanted to bring you into a welcome discussion for members who have neuropathy, so you will notice I have moved your post here:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I see that @jakedduck1 and @pnu have joined you already, so I hope you might be able to explore the information Jake sent for you!

Has your neurologist recommended any changes for you at this time?

REPLY
1 reply
lorrainehackett | @lorrainehackett | Mar 30, 2023
In reply to @jakedduck1 "@lorrainehackett @pnu Both Gabapentin and Lyrica can take up to a month or so to be..." + (show)
@jakedduck1

@lorrainehackett
@pnu
Both Gabapentin and Lyrica can take up to a month or so to be fully effective.

The only way I know to decrease progression is to repair what caused the Neuropathy.

Here is a link to The Foundation for Peripheral Neuropathy.
https://www.foundationforpn.org/
Jake

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Thank you. Have Msy appointment at Mayo in Rochester MN to see if the can identify causr.

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Amanda Roe | @amandajro | Mar 30, 2023
In reply to @pinkton "I have neuropathy which is getting worse lately. Does anyone out there have good exercises to..." + (show)
@pinkton

I have neuropathy which is getting worse lately. Does anyone out there have good exercises to help with circulation. Also what medications are everyone happy with in helping with the burning and coldness in their feet, if any. Also having trouble with walking and balance lately. Any recommendations or info to help with this situation ?

Jump to this post

Hello @pinkton, and welcome to Mayo Clinic Connect. I wanted to connect you with others who understand neuropathy, so you will notice I have moved your post here:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Members such as @artscaping, @crissy123 @dbeshears1, and @sullivan3401 have all joined and responded to you.

Have you heard of the benefits of lymphatic massage/drainage for neuropathy?

REPLY
lorrainehackett | @lorrainehackett | Mar 30, 2023
In reply to @amandajro "Hello @lorrainehackett, and welcome to Mayo Clinic Connect. I wanted to bring you into a welcome..." + (show)
@amandajro

Hello @lorrainehackett, and welcome to Mayo Clinic Connect. I wanted to bring you into a welcome discussion for members who have neuropathy, so you will notice I have moved your post here:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I see that @jakedduck1 and @pnu have joined you already, so I hope you might be able to explore the information Jake sent for you!

Has your neurologist recommended any changes for you at this time?

Jump to this post

Was on Cymbalta and my lady two Neurologist s moved or retired after one or Teo years. New Neurologist started m e on Gabapentin and titering me up since symptoms worsened.

I will check out PN Foundation.

REPLY
1 reply
dabbs | @dabbs | Mar 31, 2023
In reply to @iandunlop "Hi I am Ian Dunlop in Perth Australia. I have had a neuropathy for some years..." + (show)
@iandunlop

Hi I am Ian Dunlop in Perth Australia. I have had a neuropathy for some years now. My main problem is how to exercise with this condition. Walking and jogging are out and I am near useless with an exercise bike.
So what works?
I was extremely fit but now at 81years still good but not up to my expectations. I am a strong believer in keeping fit as you age.

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Have you tried exercise stretch bands? Their inexpensive and can help maintain muscle tone…David

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1 reply
jimmccown1 | @jimmccown1 | Mar 31, 2023
In reply to @lorrainehackett "Was on Cymbalta and my lady two Neurologist s moved or retired after one or Teo..." + (show)
@lorrainehackett

Was on Cymbalta and my lady two Neurologist s moved or retired after one or Teo years. New Neurologist started m e on Gabapentin and titering me up since symptoms worsened.

I will check out PN Foundation.

Jump to this post

I have neuropathy due to a spinal cord injury. Gabapentin has been brought up. I was prescribed it years ago at Bethesda Naval Hosp because of TBI. It worked for the pain, but two weeks later I went cross eyed. Was removed from it and 30+ days later regained full sight. Watch out for reactions.

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lorrainehackett | @lorrainehackett | Mar 31, 2023

Thanks for the information. I will be on alert for side effects

REPLY
1 reply
lorrainehackett | @lorrainehackett | Mar 31, 2023
In reply to @lorrainehackett "Thanks for the information. I will be on alert for side effects" + (show)
@lorrainehackett

Thanks for the information. I will be on alert for side effects

Jump to this post

Thanks for the info. Will be alert

REPLY
lorrainehackett | @lorrainehackett | Mar 31, 2023
In reply to @dabbs "Have you tried exercise stretch bands? Their inexpensive and can help maintain muscle tone…David" + (show)
@dabbs

Have you tried exercise stretch bands? Their inexpensive and can help maintain muscle tone…David

Jump to this post

I do a lower body stretch with bands from my physical therapist.

Have cubital tunnel right elbow which limits upper body exercise.
Of course I walk 4 to 6 miles daily and bike or exercise bike. But does not help upper body.

PT gave me a lot of bands

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