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.

John, Volunteer Mentor | @johnbishop | Jan 2, 2021

In reply to @sevenwoods "Have chronic coat hanger pain (among others). Nothing seems to help." + (show)

Hello @sevenwoods, Welcome to Mayo Clinic Connect. I wasn't familiar with coat hanger pain but did find a YouTube video that might provide some helpful information.

Has your doctor or care team provided any suggestions to help with the pain or have you tried any alternative treatments/therapy?

lorirenee1 | @lorirenee1 | Jan 2, 2021

In reply to @sevenwoods "Have chronic coat hanger pain (among others). Nothing seems to help." + (show)

@sevenwoods You might try doing vagus nerve resetting exercises to help your neck pain. You have 2 vagus nerves running through your neck, and exercises for them may help. Go to youtube for vagus nerve resetting videos. I think a lady named Suki Baxter does them. LoriRenee1

mce | @mce | Jan 2, 2021

Hello to the group. I worked as a Respiratory Therapist for 40 years. I loved my job, but as a result of the work and genetics, I have osteoarthritis and now neuropathy in my feet and hands. Not sure where to turn. I have had injections in my feet and it made it worse. I will not due surgery.

sevenwoods | @sevenwoods | Jan 2, 2021

In reply to @lorirenee1 "@sevenwoods You might try doing vagus nerve resetting exercises to help your neck pain. You have..." + (show)

Thanks. I'll look it up

sevenwoods | @sevenwoods | Jan 2, 2021

In reply to @johnbishop "Hello @sevenwoods, Welcome to Mayo Clinic Connect. I wasn't familiar with coat hanger pain but did..." + (show)

Very interesting and true. But I to sit down or at least stop moving some time!

takjack | @takjack | Jan 2, 2021

Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed in 2006, CIDP. Diagnosed correctly in 2009. She is in pain most days. Always looking for something new.

John, Volunteer Mentor | @johnbishop | Jan 2, 2021

In reply to @mce "Hello to the group. I worked as a Respiratory Therapist for 40 years. I loved my..." + (show)

Hello @mce, Welcome to Connect. I also have osteoarthritis and idiopathic small fiber peripheral neuropathy. I didn't know they did injections in the feet to help with neuropathic pain. If you are looking for alternatives, the Foundation for Peripheral Neuropathy website has some information you might find helpful.

Complementary + Integrative Therapies: https://www.foundationforpn.org/living-well/integrative-therapies/

There is another discussion you might find helpful where members share their personal journeys with neuropathy.
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Are you able to share a little more about your symptoms and anything you've tried that provided some relief?

John, Volunteer Mentor | @johnbishop | Jan 2, 2021

In reply to @takjack "Ted. My wife, Cheryl, has neuropathy. It is a result of POEMS Syndrome. She was misdiagnosed..." + (show)

Hello @takjack, Welcome to Connect. I know it must be hard for both you and your wife when she's in pain and nothing seems to help with the POEMs induced neuropathy. One of the things that helped me was just learning as much as I can about my health conditions so that I could ask better questions of my primary care doctors. I've also learned the hard way to write my questions on a list to take with me so I won't forget. I'm not sure if you have seen these pages but thought they may be helpful.

An update on the diagnosis and management of the polyneuropathy of POEMS syndrome:
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6343023/
Foundation for Peripheral Neuropathy - POEMS - Treatment & Therapy:
- https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/autoimmune-disease/poems/
POEMS syndrome care at Mayo Clinic:
- https://www.mayoclinic.org/diseases-conditions/poems-syndrome/care-at-mayo-clinic/mac-20352681

You may also be interested in this Mayo Clinic Newsfeed page on POEMS which has a link to a clinical trial that may still be available.
- POEMS: An expertise in the rare leads to a rare opportunity: https://connect.mayoclinic.org/page/hematology/newsfeed-post/poems-an-expertise-in-the-rare-leads-to-a-rare-opportunity/

Has your wife found anything that helps with the neuropathic pain?

msstoppainnagginme | @msstoppainnagginme | Jan 2, 2021

In reply to @mce "Hello to the group. I worked as a Respiratory Therapist for 40 years. I loved my..." + (show)

@mcel Dear fellow suffer from osteoarthritis. Have u tried seeing a Rheumatologist or your PCP has done any blood work to figure out if it is diabetic Neuropathy or what type of Arthritis or if it is nerve pain related?

At least go get it checked out by a Neurologist to see what exactly is causing it. There are alot of different forms of treatment for osteoarthritis, without surgery.
Hope u feel better. Try Voltaren gel yet?