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.

fb4 | @fb4 | 20 hours ago

Just want to thank you all for sharing your experiences. I am kind of new to PN. It became a serious concern the last 2 years. I did not connect my PN with my balance problems, but reading your experiences and suggestions is extremely helpful.

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Mentor
John, Volunteer Mentor | @johnbishop | 19 hours ago
In reply to @fb4 "Just want to thank you all for sharing your experiences. I am kind of new to..." + (show)
@fb4

Just want to thank you all for sharing your experiences. I am kind of new to PN. It became a serious concern the last 2 years. I did not connect my PN with my balance problems, but reading your experiences and suggestions is extremely helpful.

Jump to this post

Welcome @fb4, I think most of us dealing with neuropathy have some balance issues. Have you tried any exercises or physical therapy to see if it might help?

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1 reply
johnnieray47 | @johnnieray47 | 18 hours ago
In reply to @johnbishop "Hi @johnnieray47, Welcome to Connect. Sorry to hear you are dealing with peripheral neuropathy. PN is..." + (show)
@johnbishop

Hi @johnnieray47, Welcome to Connect. Sorry to hear you are dealing with peripheral neuropathy. PN is what brought me to Connect back in 2016. I shared my neuropathy journey along with other members in another discussion here - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

I know it's not much comfort but you are not alone. I think most of us suffering with the different neuropathy symptoms came to Connect hoping to find the magic bullet that cures neuropathy when one doesn't exist. What we can do together is share our experiences and learn from each other what we have found that has provided us with some type of relief. The best thing we can do is be our own best advocate by learning as much as we can about our condition and what treatments may provide a form of relief. A great place to learn more about neuropathy is the Foundation for Peripheral Neuropathy website - https://www.foundationforpn.org/living-well/.

Have you done any research on alternative or complementary treatments for neuropathy? What symptoms bother you the most if you don't mind me asking?

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@johnbishop , I have tried acupuncture, mama bear, several different internet pills, Gabapentin, etc. The best relief so far has been copper fit compression sleeves for plantar fascia.
Worst problem is numbness on balls of feet and swollen feeling.

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linda6101 | @linda6101 | 17 hours ago
In reply to @johnnieray47 "Hi, my name is johnnie ray and I have had peripheral neuropathy for about three years...." + (show)
@johnnieray47

Hi, my name is johnnie ray and I have had peripheral neuropathy for about three years. My VA doc and Medicare doc both tell me nothing will help. All they offer is gabapentin or Lyrica .

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I have recently gotten neuropathy from a recent minimally evasive surgery done in October. Just had a new MRI and I will be discussing why I have this symptom now. Will keep you posted on his answer. I know physical therapy and exercises on line that suppose to help. Pain meds also help but you can only get them from a pain specialist doctor. I take Norco.

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fb4 | @fb4 | 15 hours ago
In reply to @johnbishop "Welcome @fb4, I think most of us dealing with neuropathy have some balance issues. Have you..." + (show)
@johnbishop

Welcome @fb4, I think most of us dealing with neuropathy have some balance issues. Have you tried any exercises or physical therapy to see if it might help?

Jump to this post

Yes, I am exercising with a goal of improving my balance. I do find some positive results, and I hope by continuing, it improves my sense of stability.
Thank you.

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bjk3 | @bjk3 | 8 hours ago
In reply to @ray666 "Hi, Barb Fetching that morning newspaper is Ray's First Great Adventure of thr the Day. Our..." + (show)
@ray666

Hi, Barb

Fetching that morning newspaper is Ray's First Great Adventure of thr the Day.
Our front door has an unusually muscular pneumatic tube that, as you attempt to step out, tries its damnedest to push you back indoors. (We've tried adjusting the tube. No luck.) After that, there's the garden walk. Once you reach the end of the walk, the next giggle is finding where the morning paper, pitched from the passing delivery van, has landed: findable? reachable? beyond the curb? on the roof of my Jeep? unfindable? (always a possibility). All the while, my eyes are darting right and left, knowing that if I'm not vigilant I'm sure to be mowed down by a 80 mph skakeboarder.

Cheers!
Ray (@ray666)

Jump to this post

Hi Ray (@ray666) --
My front door has the same unusually muscular pneumatic tube as yours, white in color (as if that matters). My youngest son, frustrated with the bother of trying to adjust it one day when he was over, just removed the tube altogether. It isn't the most attractive fix, but it sure solved the problem! Now I just need to be extra vigilant on real windy days that the door doesn't blow itself off the hinges as I open it to retrieve the mail - lol.
Enjoy the week!
Barb

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