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.

andyjustin | @andyjustin | 21 hours ago

In reply to @johnbishop "Or maybe .... Living Well with Neuropathy 🙃 https://www.foundationforpn.org/living-well/" + (show)

Not to be a downer somehow I don’t like living well with neuropathy I could say living in hell with neuropathy or I could say maybe not hell just purgatory because there’s always hope in purgatory However the point that living well with neuropathy means taking care of yourself and doing the best I’m all for it but now on a sidenote, I have to check in with my neuropathy and see if it approves. I do treat my neuropathy as an alter ego a Jekyll and Hyde kind of thing I hope everybody reads my post understanding. I always try to take lemons and make lemonade always could use a little more sugar.😎👍

andyjustin | @andyjustin | 21 hours ago

I’m just wondering if anybody on this website actually has autonomic neuropathy I’d love to exchange experiences with them

newnye | @newnye | 21 hours ago

Has anyone heard of a Cionic Neural Sleeve for neuropathy. It was just approved by FDA

John, Volunteer Mentor | @johnbishop | 20 hours ago

In reply to @andyjustin "I’m just wondering if anybody on this website actually has autonomic neuropathy I’d love to exchange..." + (show)

Quite a few members have posted about autonomic neuropathy. Just click the search icon at the top and type in autonomic neuropathy to find the different discussions and comments.

sharonanne3 | @sharonanne3 | 20 hours ago

I have MS and wonder if my burning painful feet and ankles could be connected walk is excruciating!

John, Volunteer Mentor | @johnbishop | 18 hours ago

In reply to @sharonanne3 "I have MS and wonder if my burning painful feet and ankles could be connected walk..." + (show)

Welcome @sharonanne3, There are quite a few members who have posted about burning and painful feet with MS. Here's a link to the list of discussions and comments by members with similar experience - https://connect.mayoclinic.org/search/?search=MS+and+burning+feet.

There are also many different discussions and comments on MS that you might find helpful - https://connect.mayoclinic.org/search/?search=Multiple+sclerosis.

andyjustin | @andyjustin | 6 hours ago

In reply to @lamkj5 "I’ve had neuropathy for 10 years and had to up my gabapentin to 2400 mg daily...." + (show)

I think I’m a little like you who cares about dosage you need to take whatever works for you. What’s most important is to alleviate the pain

mrgirl | @mrgirl | 5 hours ago

I was dx with peripheral neuropathy last summer 2024. Idiopathic. Have recently noted increasing pain,cramps in my feetwhen working out in the hot springs in my area. Water temp is about 92 degrees. Has anyone experienced this phenomenon? What to do?

John, Volunteer Mentor | @johnbishop | 4 hours ago

In reply to @mrgirl "I was dx with peripheral neuropathy last summer 2024. Idiopathic. Have recently noted increasing pain,cramps in..." + (show)

Hello @mrgirl, Welcome to Connect. Sorry to hear that you have joined the neuropathy club. I also have idiopathic small fiber peripheral neuropathy but don't have any pain, just some numbness. I have had leg cramps that sometimes come with a little pain but it's mostly if I haven't stayed hydrated and drinking more water helped me. I imagine I would need a lot more water if I was working out in hot springs.

For neuropathy symptoms in general, the best thing you can do to help yourself is to learn as much as you can about your condition and what treatments are available that may provide some form of relief. Lots of experience here on Connect. There are many different discussions in the Neuropathy Support Group that you might find helpful - https://connect.mayoclinic.org/group/neuropathy/.

What symptoms do you have with your neuropathy?

mrgirl | @mrgirl | 3 hours ago

In reply to @johnbishop "Hello @mrgirl, Welcome to Connect. Sorry to hear that you have joined the neuropathy club. I..." + (show)

Oh, thank you John gor the heartfelt response. I have begun my journey. What an adventure! Being an ACTIVE 80 y/o this diagnosis came as a ig surprise. The Idiopathic dx is perplexing. Trying to narrow it down to possible causes . Some may be not being hydrated, excessive artifical sweeteners. A conundrum? Again thank you as I journey for improved results. Has anyone you know tried Class IV laser therapy? Am in process but can get expensive.