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.

deanna2 | @deanna2 | Oct 17, 2021
In reply to @mcd123 "Not sure where to ask this question...do others feel more pain in toes when wearing socks?..." + (show)
@mcd123

Not sure where to ask this question...do others feel more pain in toes when wearing socks? ...if so any suggestions...thanks...cathy

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Wearing socks helped me with neuropathy at night because it kept the sheets from rubbing my toes.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Oct 17, 2021
In reply to @pfbacon "I'm at 1200 gaba twice a day and a 325 Lyrica at night. We need to..." + (show)
@pfbacon

I'm at 1200 gaba twice a day and a 325 Lyrica at night. We need to raise the gaba or add something else as I'm in pain most of every day, I get a few hours relief when I focus on something else. We started with one 300 gaba each day, it worked for awhile, then 3 of those, then my doctor referred me to a neurologist who did testing and official diagnosis. Gradually, she raised it as my condition progressed, then referred me to a pain specialist who has gradually raised it to present levels,I hope that helps. I don't remember exactly how much when. I hope that helps ... Peggy

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Hi Peggy! I'm glad to hear that you get a few hours of relief when you focus on something else. That is the goal indeed. What type of things do you like to focus on for distraction?

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kskill39 | @kskill39 | Oct 17, 2021

My toes hurt with or without socks. It feels like every nail is ingrown

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1 reply
pfbacon | @pfbacon | Oct 17, 2021

When I'm with people, I'm okay, so I have breakfast with my friends often, and we have been meeting via zoom almost every day during covid to help each other stay sane (by the way - there are a lot of crazy people out there who have been alone, breathing their own carbon dioxide for 1 1/2 years, and some of them have gone nuts), I run on the beach every day no matter what the weather (I have amassed gear for all kinds), I pet doggies out there and compliment their owners, I smile and wave at everyone who looks at me (I've gotten a range of reactions, some of them hilarious), and I play a couple games of cribbage with hubby every night. Before covid, I had girlfriends over to play games at least once a month. I have bumper pool, indoor/outdoor croquet, indoor mini golf, indoor and outdoor badminton, air hockey and a dozen more. I like to play poker and trivia games but haven't found anyone to play those with me. Does that give you some ideas? Peggy

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1 reply
pfbacon | @pfbacon | Oct 17, 2021
In reply to @pfbacon "When I'm with people, I'm okay, so I have breakfast with my friends often, and we..." + (show)
@pfbacon

When I'm with people, I'm okay, so I have breakfast with my friends often, and we have been meeting via zoom almost every day during covid to help each other stay sane (by the way - there are a lot of crazy people out there who have been alone, breathing their own carbon dioxide for 1 1/2 years, and some of them have gone nuts), I run on the beach every day no matter what the weather (I have amassed gear for all kinds), I pet doggies out there and compliment their owners, I smile and wave at everyone who looks at me (I've gotten a range of reactions, some of them hilarious), and I play a couple games of cribbage with hubby every night. Before covid, I had girlfriends over to play games at least once a month. I have bumper pool, indoor/outdoor croquet, indoor mini golf, indoor and outdoor badminton, air hockey and a dozen more. I like to play poker and trivia games but haven't found anyone to play those with me. Does that give you some ideas? Peggy

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What do the rest of you do to cope? What distracts you?
I relate to constant ingrown toenails - my feet feel constant burning, like they have athletes foot all over or I'm standing in a bonfire. Peggy

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tigreyes2004 | @tigreyes2004 | Oct 23, 2021

I have peripheral neuropathy . I had a MRI & it shows I have disk herniation & spondylolisthesis.
In the neck I have spondylolisthesis of c-4 &5. Do you think if I have surgery it will help with the terrible chronic pain I am experiencing?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 23, 2021
In reply to @tigreyes2004 "I have peripheral neuropathy . I had a MRI & it shows I have disk herniation..." + (show)
@tigreyes2004

I have peripheral neuropathy . I had a MRI & it shows I have disk herniation & spondylolisthesis.
In the neck I have spondylolisthesis of c-4 &5. Do you think if I have surgery it will help with the terrible chronic pain I am experiencing?

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Hi @tigreyes2004, I don't think anyone on Connect can really answer your question since we are not doctors or medical professionals and can only share our experiences. Does your doctor or surgeon think surgery will help with the chronic pain you are experiencing?

Have you ever looked into Myofascial Release Therapy to see if that might offer some relief for the pain? There is another discussion and a really good video that explains it at the top of the discussion here: https://connect.mayoclinic.org/comment/247117/

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tigreyes2004 | @tigreyes2004 | Oct 23, 2021

Hi John
All I wanted to know was if anyone ever did surgery & felt better. My Neuropathy dr. has recommended me to a Neurosurgeon & I don't see him till the end of Nov. I'm trying to get opinions. I will look into the Myofasial Release Therapy.
Thank you
tigreyes

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1 reply
bcool123 | @bcool123 | Oct 23, 2021

Wondering if anyone has tried or had any positive results taking turmeric powder?

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Leonard | @jakedduck1 | Oct 23, 2021

@bcool123
My mother went to the Orthopedic doctor complaining of knee pain and he suggested she take turmeric.
It got rid of her pain completely.
Jake

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