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.

medman18 | @medman18 | Nov 17, 2022
In reply to @johnbishop "Hello Jack @medman18, No need to join the group, if you have neuropathy you are welcome..." + (show)
@johnbishop

Hello Jack @medman18, No need to join the group, if you have neuropathy you are welcome to share experiences, ask questions as we all learn from each others experiences. I see by reading through some of your previous posts you've posted in several neuropathy discussions. Wondering if you might also find the following discussions helpful.

-- Idiopathic Progressive Polyneuropathy: How to find a specialist?
https://connect.mayoclinic.org/discussion/idiopathic-progressive-polyneuropathy/
-- Member Neuropathy Journey Stories: What's Yours?:
https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here are a couple of websites I use for learning more about neuropathy and possible treatments:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Jump to this post

John thank you so much for all the information you sent. I will be checking it all out.
Jack

REPLY
annie88 | @annie88 | Nov 17, 2022
In reply to @peggioh "Hello again Chris. I'd like to ask my doctor for a prescription, for medical canabis, but..." + (show)
@peggioh

Hello again Chris. I'd like to ask my doctor for a prescription, for medical canabis, but what do people ask for? Is it pill form? (you certainly don't smoke it, I'm sure!) Is the CBD/THC you take a prescription also, or is that separate that you buy yourself? Any good brand? I'm desperate for SLEEP!!!!!

Jump to this post

I was to see my doctor just the other day and he informed me that he could not prescribe cannabis but he did recommend a supplement to get at the health food store. Next time I go to town, I will get some.

REPLY
1 reply
peggioh | @peggioh | Nov 17, 2022
In reply to @annie88 "I was to see my doctor just the other day and he informed me that he..." + (show)
@annie88

I was to see my doctor just the other day and he informed me that he could not prescribe cannabis but he did recommend a supplement to get at the health food store. Next time I go to town, I will get some.

Jump to this post

Hi Annie, it turns out that in Massachusetts where I live, a prescription isn't necessary, it's all legal for anyone. I just have to pick and choose on my own. Luckily I know someone who can order me a good brand of tablets. P.

REPLY
frattmaa | @frattmaa | Nov 18, 2022
In reply to @pamelaz "I wish I could say yes. But nothing works." + (show)
@pamelaz

I wish I could say yes. But nothing works.

Jump to this post

Nothing helps for your neuropathy?

REPLY
1 reply
luckyd2002 | @luckyd2002 | Nov 19, 2022
In reply to @pamelaz "I wish I could say yes. But nothing works." + (show)
@pamelaz

I wish I could say yes. But nothing works.

Jump to this post

I had back surgery 2 yrs ago that resulted in neuropathy in both feet.
So bad for while I didn’t drive. I have found couple things that give me some relief, Amitriptyline
Amitriptyline is a tricyclic antidepressant that is widely used to treat chronic neuropathic pain (pain due to nerve damage). It is recommended as a first line treatment in many guidelines. Neuropathic pain can be treated with antidepressant drugs in doses below those at which the drugs act as antidepressants.
Also I use a foot roller with the spiky knobs to activate nerves and roll back and forth while sitting in chair and alternate feet. The roller can be chilled but I prefer room temp.
I am always looking for more ways to get relief so please share.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Nov 19, 2022
In reply to @luckyd2002 "I had back surgery 2 yrs ago that resulted in neuropathy in both feet. So bad..." + (show)
@luckyd2002

I had back surgery 2 yrs ago that resulted in neuropathy in both feet.
So bad for while I didn’t drive. I have found couple things that give me some relief, Amitriptyline
Amitriptyline is a tricyclic antidepressant that is widely used to treat chronic neuropathic pain (pain due to nerve damage). It is recommended as a first line treatment in many guidelines. Neuropathic pain can be treated with antidepressant drugs in doses below those at which the drugs act as antidepressants.
Also I use a foot roller with the spiky knobs to activate nerves and roll back and forth while sitting in chair and alternate feet. The roller can be chilled but I prefer room temp.
I am always looking for more ways to get relief so please share.

Jump to this post

Hello @luckyd2002, Welcome to Connect. Sorry to hear that your back surgery resulted in neuropathy in your feet. Thank you for sharing what helps you. Thought you might also find the following list of treatments on the Foundation for Peripheral Neuropathy website helpful - https://www.foundationforpn.org/treatments/.

You might also find the following discussion helpful:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of or tried Myofascial Release Therapy (MFR)?

REPLY
1 reply
luckyd2002 | @luckyd2002 | Nov 21, 2022
In reply to @johnbishop "Hello @luckyd2002, Welcome to Connect. Sorry to hear that your back surgery resulted in neuropathy in..." + (show)
@johnbishop

Hello @luckyd2002, Welcome to Connect. Sorry to hear that your back surgery resulted in neuropathy in your feet. Thank you for sharing what helps you. Thought you might also find the following list of treatments on the Foundation for Peripheral Neuropathy website helpful - https://www.foundationforpn.org/treatments/.

You might also find the following discussion helpful:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of or tried Myofascial Release Therapy (MFR)?

Jump to this post

Thx

REPLY
luckyd2002 | @luckyd2002 | Nov 21, 2022

Great suggestion appreciate that. Will definitely pursue the different avenues!

REPLY
pamelaz | @pamelaz | Nov 21, 2022
In reply to @luckyd2002 "I had back surgery 2 yrs ago that resulted in neuropathy in both feet. So bad..." + (show)
@luckyd2002

I had back surgery 2 yrs ago that resulted in neuropathy in both feet.
So bad for while I didn’t drive. I have found couple things that give me some relief, Amitriptyline
Amitriptyline is a tricyclic antidepressant that is widely used to treat chronic neuropathic pain (pain due to nerve damage). It is recommended as a first line treatment in many guidelines. Neuropathic pain can be treated with antidepressant drugs in doses below those at which the drugs act as antidepressants.
Also I use a foot roller with the spiky knobs to activate nerves and roll back and forth while sitting in chair and alternate feet. The roller can be chilled but I prefer room temp.
I am always looking for more ways to get relief so please share.

Jump to this post

Does this go by another name?

REPLY
2 replies
pamelaz | @pamelaz | Nov 21, 2022
In reply to @frattmaa "Nothing helps for your neuropathy?" + (show)
@frattmaa

Nothing helps for your neuropathy?

Jump to this post

Not that I have found. It is so painful.

REPLY
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