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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.

dieterreuther | @dieterreuther | Mar 31 4:40pm
In reply to @joanland "Hi dieterreuther, and welcome to a club you never dreamed of joining . . . I'm..." + (show)
@joanland

Hi dieterreuther, and welcome to a club you never dreamed of joining . . . I'm about 9 years into my PN journey. I have absolutely no medical teaching; I'm simply a patient, so take this or leave it. My feeling is to do as much exercise as you want and can while you can. I think the stronger a person is when they enter the more debilitating effects of this process, the slower the effects will be. I have nothing to back this up other than my experience. Be good to your feet, make certain you are with a medical provider you trust and have confidence in, and enjoy what gives you pleasure. (I only ran one marathon, many years ago, the Seaside Marathon, in Seaside, OR.)

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Sounds good @joanland. Thank you! I am keeping my fingers crossed that I can make it through this probably last Marathon. Many years ago when I lived in Portland OR I ran the Hood to Coast relay race several times which always ended in Seaside. Good memories!

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joanland | @joanland | Mar 31 5:47pm

Hi dieterreuther- Yes, many friends participated in the Hood to Coast, but it was one I never did. I rode my bicycle in the Pole, Pedal, Paddle several years in a row. That was a hoot - riding from Mt. Bachelor down to Bend. I was clocked at 43 mph! Fortunately, the bicycle route down Century Drive was swept, by hand, right before the race to get anything off the roadway that could divert those skinny tires. Those rides were great fun!

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mrbip | @mrbip | Apr 1 8:36am

I have PN, no pain, just a serious balance problem. My neuro says the balance problem will slowly get worse, and that's what's been happening. My docs say the only treatment is physical therapy, which I was doing until i had a bad fall about a week ago. The balance problem prevents me from traveling, so I see my son and brother only when they come here (Santa Monica). It does not help that I'm 89.
- Mr Bip

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smokey80 | @smokey80 | Apr 1 10:48am

Hello Colleen and John:
I am new to this group and have been living with neuropathy for several years. Although I understand that little can be done to alleviate the problems neuropathy presents, I have tried to educate myself s to what other options could be available for some relief.

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1 reply
harley22 | @harley22 | Apr 1 10:56am
In reply to @smokey80 "Hello Colleen and John: I am new to this group and have been living with neuropathy..." + (show)
@smokey80

Hello Colleen and John:
I am new to this group and have been living with neuropathy for several years. Although I understand that little can be done to alleviate the problems neuropathy presents, I have tried to educate myself s to what other options could be available for some relief.

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Me also.
Please share as I’m looking for some helpful relief also!

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jlnda | @jlnda | Apr 2 4:39am
In reply to @joanland "Hi dieterreuther, and welcome to a club you never dreamed of joining . . . I'm..." + (show)
@joanland

Hi dieterreuther, and welcome to a club you never dreamed of joining . . . I'm about 9 years into my PN journey. I have absolutely no medical teaching; I'm simply a patient, so take this or leave it. My feeling is to do as much exercise as you want and can while you can. I think the stronger a person is when they enter the more debilitating effects of this process, the slower the effects will be. I have nothing to back this up other than my experience. Be good to your feet, make certain you are with a medical provider you trust and have confidence in, and enjoy what gives you pleasure. (I only ran one marathon, many years ago, the Seaside Marathon, in Seaside, OR.)

Jump to this post

I totally agree with you. We should just keep moving. I like to do Tai chi and qigong with channels on YouTube. Many to choose from.

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1942marilyne. Marilyn McFarland | @1942marilyne | Apr 3 10:17am
In reply to @julbpat "I definitely endorse doing land PT over water, if you can. I do water only because..." + (show)
@julbpat

I definitely endorse doing land PT over water, if you can. I do water only because it’s too painful to do land exercises. Being in the water takes away the pain, but I know pain isn’t a problem for you. I have no doubt I was getting a better workout when I went for a brisk walk, or used the machines at the gym.

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Have not been able to do land walking for any distance. Water walking has kept me mobile

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dieterreuther | @dieterreuther | Apr 4 9:34am
In reply to @harley22 "I started applying Salonpas pain patches to the bottom of my feet for pain, and they..." + (show)
@harley22

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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@harley22 I have been testing CareLand 4% Lidocaine Gel Patches and WELMATE 4% Lidocaine Numbing Patches. I personally prefer the CareLand brand because the patches stick well and are easy to handle. The Welmate patches might be worthwhile exploring in your case because they don't stick that much. Available at Amazon.

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1 reply
0612judy | @0612judy | Apr 5 10:31am
In reply to @dieterreuther "@Harley22 I have been testing CareLand 4% Lidocaine Gel Patches and WELMATE 4% Lidocaine Numbing Patches...." + (show)
@dieterreuther

@harley22 I have been testing CareLand 4% Lidocaine Gel Patches and WELMATE 4% Lidocaine Numbing Patches. I personally prefer the CareLand brand because the patches stick well and are easy to handle. The Welmate patches might be worthwhile exploring in your case because they don't stick that much. Available at Amazon.

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I use Salonpas pain relief patches at night when the pain in my legs keeps me from sleeping and they are pretty effective. Have just started on Gabapentin at bedtime which keeps my toes pretty pain free until about 7 pm the next evening but does nothing for the pain in my legs. Unfortunately, it also makes me feel a bit groggy all day but I have only been on it for a week so not sure if this will lesson as my body adjusts.

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dieterreuther | @dieterreuther | Apr 5 10:48am

@0612judy I have just been prescribed Gabapentin and am wondering whether it is OK to take it "on demand", for example at bedtime like you do or before a walk/run. The instructions that came with my prescription state to never stop taking the medication.

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