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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.

Mentor
John, Volunteer Mentor | @johnbishop | May 17 8:39am
In reply to @gramma206 "I have chemotherapy-induced peripheral neuropathy in my hands and feet. Last year it was so severe..." + (show)
@gramma206

I have chemotherapy-induced peripheral neuropathy in my hands and feet. Last year it was so severe that I ended up in a nursing home/rehab facility for 3 months. I've been working with physical therapists since then and am getting stronger. I can put up with the pain easier than the bilateral foot drop which affects my balance. I wear large AFOS on both feet to keep me from tripping over my toes. Would love to hear from people with similar issues and successful treatments.

Jump to this post

Welcome @gramma206, Sorry to hear you are struggling with chemo induced neuropathy. You might find reading through the following discussion helpful:
--- Chemotherapy-induced neuropathy: What helps get rid of it?
https://connect.mayoclinic.org/discussion/chemotherapy-induced-neuropathy/

REPLY
justjudy | @justjudy | May 18 3:35pm

Hi Roger,
Is the Lumbar stenosis /neuropathy coming from your Mitral replacement, is that what you are saying ? I am looking at Open Heart someday, they are keeping ECHO'S , it was every 3 months now it went to 6 months, actually looked a little better this time if that is possible, I had RF as a child. How would you say you surgery went and you did in fact have a replacement ? Mechanical or tissue. I sure hope you got to the bottom of your issue. I just got on this site and now noticed that your post was from a few years ago.

REPLY
boho44 | @boho44 | May 20 8:19pm

I have axonal peripheral neuropathy. I’ll be interested to read what others who have have it have to say.

REPLY
2 replies
mrbud | @mrbud | May 20 8:30pm

Hi I’m Bud and i have peripheral neuropathy that’s what the doctor says. I was burned when I was seven years old up to midcalf. I’ve always had neuropathy in my legs that I can remember as I’ve gotten older. The neuropathy has gone to my hands and fingers. People don’t have it and never experience it, have the slightest idea what pain is burning and tingling all day long all night long keeping you awake yeah it gets to be rough anyway I’m Bud and thank you for allowing me to be here

REPLY
2 replies
mrbud | @mrbud | May 20 8:37pm
In reply to @gramma206 "I have chemotherapy-induced peripheral neuropathy in my hands and feet. Last year it was so severe..." + (show)
@gramma206

I have chemotherapy-induced peripheral neuropathy in my hands and feet. Last year it was so severe that I ended up in a nursing home/rehab facility for 3 months. I've been working with physical therapists since then and am getting stronger. I can put up with the pain easier than the bilateral foot drop which affects my balance. I wear large AFOS on both feet to keep me from tripping over my toes. Would love to hear from people with similar issues and successful treatments.

Jump to this post

I found Naturmade Super B complex lessened my pain and zinging

REPLY
1 reply
gramma206 | @gramma206 | May 20 8:47pm
In reply to @mrbud "I found Naturmade Super B complex lessened my pain and zinging" + (show)
@mrbud

I found Naturmade Super B complex lessened my pain and zinging

Jump to this post

Thanks for your thoughtfulness. I take super B complex and also 2400 mg daily of alpha lipoic acid, which my neurologist said was the only substance that had shown any possibility of lessening PN. Our body needs the B vitamins to metabolize it.

REPLY
1 reply
harley22 | @harley22 | May 21 2:19am
In reply to @mrbud "Hi I’m Bud and i have peripheral neuropathy that’s what the doctor says. I was burned..." + (show)
@mrbud

Hi I’m Bud and i have peripheral neuropathy that’s what the doctor says. I was burned when I was seven years old up to midcalf. I’ve always had neuropathy in my legs that I can remember as I’ve gotten older. The neuropathy has gone to my hands and fingers. People don’t have it and never experience it, have the slightest idea what pain is burning and tingling all day long all night long keeping you awake yeah it gets to be rough anyway I’m Bud and thank you for allowing me to be here

Jump to this post

You hit the nail on the head exactly.
Hoping for at least one day pain free!

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 21 7:57am
In reply to @mrbud "Hi I’m Bud and i have peripheral neuropathy that’s what the doctor says. I was burned..." + (show)
@mrbud

Hi I’m Bud and i have peripheral neuropathy that’s what the doctor says. I was burned when I was seven years old up to midcalf. I’ve always had neuropathy in my legs that I can remember as I’ve gotten older. The neuropathy has gone to my hands and fingers. People don’t have it and never experience it, have the slightest idea what pain is burning and tingling all day long all night long keeping you awake yeah it gets to be rough anyway I’m Bud and thank you for allowing me to be here

Jump to this post

Welcome Bud @mrbud, You are right about folks that have not experienced the pain and other symptoms of neuropathy have no idea of the daily struggles it presents for many of us. There are many other discussions in the Neuropathy Support Group that you might like to scan through to learn what others have shared. Here is a link to the list of neuropathy discussions - https://connect.mayoclinic.org/group/neuropathy/.

Another site you might find helpful for neuropathy is the Foundation for Peripheral Neuropathy and their Living Well with Neuropathy page here - https://www.foundationforpn.org/living-well/.

I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. It's good to hear that you have found some relief for the pain and zinging using Nature Made B Complex Super.

Have you tried any other complementary or alternative treatments?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 21 8:12am
In reply to @boho44 "I have axonal peripheral neuropathy. I’ll be interested to read what others who have have it..." + (show)
@boho44

I have axonal peripheral neuropathy. I’ll be interested to read what others who have have it have to say.

Jump to this post

Welcome @boho44, You might want to scan through the following discussion to learn what others have shared:
--- Axonal peripheral neuropathy: Finally, a diagnosis!: https://connect.mayoclinic.org/discussion/axonal-peripheral-neuropathy-finally-a-diagnosis/

Are you able to share a little more about your symptoms and any treatments you have tried?

REPLY
1 reply
memyselfi | @memyselfi | May 22 3:39pm
In reply to @gramma206 "Thanks for your thoughtfulness. I take super B complex and also 2400 mg daily of alpha..." + (show)
@gramma206

Thanks for your thoughtfulness. I take super B complex and also 2400 mg daily of alpha lipoic acid, which my neurologist said was the only substance that had shown any possibility of lessening PN. Our body needs the B vitamins to metabolize it.

Jump to this post

For some reason I can't remember hearing of alpha-lipoic acid as a possible treatment for PN pain. Has it worked at all for you?

REPLY
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