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.

gus0557 | @gus0557 | Apr 10 4:12pm

In reply to @johnbishop "Hello Gus @gus0557, Welcome to Connect. I'm hoping you get some answers when you see your..." + (show)

Thank you John for your welcoming message and the included information. The test I had today also revealed early manifestation of small fiber neuropathy in addition to the other 2 cases. Indeed I wish it was just the tingling and no pain. In fact, at the end of each day, I become almost unable to step on the bottom of my feet. They are quite painful along with terrible tingling. And my right arm is about to fall off.
I shall see what the neurologist will say. In the meantime, I shall visit the links you sent me and see what help I may be able to find.
Thanks again.

herroyall | @herroyall | Apr 10 5:10pm

I don’t know which neuropathy I have. I it started a few days after I had a 3 disc spinal fusion. It has been 10 yrs and has gotten worse it’s moving to the right leg now when it was only in my left leg. It’s extremely painful and can’t sleep at night.What should I do at this point.

John, Volunteer Mentor | @johnbishop | Apr 11 7:31am

In reply to @herroyall "I don’t know which neuropathy I have. I it started a few days after I had..." + (show)

Welcome @herroyall, I am sorry to hear that you have been dealing with the pain for more than 10 years and haven't had much relief since the spinal fusion. There are other members who have shared their experience with similar symptoms following a spinal infusion. Here is a search link that lists the comments if you would like to scan through them - https://connect.mayoclinic.org/search/comments/?search=neuropathy%20following%20spinal%20fusion.

The Foundation for Peripheral Neuropathy has a list of complementary and alternative therapies if you want to scan through them - https://www.foundationforpn.org/therapies/

Have you thought about seeking help at a teaching hospital or major health facility like Mayo Clinic?

webbit | @webbit | 6 days ago

Glad to have found this support group.

John, Volunteer Mentor | @johnbishop | 6 days ago

In reply to @webbit "Glad to have found this support group." + (show)

Hi @webbit, Welcome to Connect. There are many helpful discussions in the Neuropathy Support Group. Here's a link that lists all of the discussions if you want to scan through them - https://connect.mayoclinic.org/group/neuropathy/.

Do you have any questions you trying to get answered?

artemis1886 | @artemis1886 | 4 days ago

In reply to @pspencer2500 "My name is Paul. I was diagnosed with neuropathy back in 2015 at the Mayo Clinic...." + (show)

Neuropathy cause’s gastroparesis aka slow digestion. Red meat stay on your stomach longer because it’s heavier. I can eat four bites after that I throw up. Have you been to a GI doctor.

asteeleks | @asteeleks | 4 days ago

Morning. I'm Andy, 54 yo male. I have diabetic neuropathy in both feet as well as CPRS in my left foot. Everything in my feet was somewhat controlled until a year ago. A year ago I was in an auto accident. I was partially ejected (yes I'm an idiot for not having my seat belt on). My left foot was crushed between the front wheel and the brake pedal then ripped out as I was being ejected. It took 3 surgeries, 6 pins I forgot how many screws and a lot of K-wire to reconstruct my foot. Now both feet seem yo be in a constant flare up. My care team and I can not seem to find the right balance of treatments to keep my pain level down and not having me drugged up and nonfunctional. I'm either in so much pain I can't walk or drugged up and so tired I can't stay awake. Sometimes even both at once. I just want to get back to some sort of life that seems meaningful

John, Volunteer Mentor | @johnbishop | 4 days ago

In reply to @asteeleks "Morning. I'm Andy, 54 yo male. I have diabetic neuropathy in both feet as well as..." + (show)

Hi Andy @asteeleks, I can't imagine how difficult it is to deal with the additional pain that's now in both feet. Not sure if you have seen any information from the Foundation for Peripheral Neuropathy but thought I would share it with you.
-- Complementary Therapies - https://www.foundationforpn.org/therapies/
-- A Holistic Approach to Diabetic Peripheral Neuropathy - https://youtu.be/pauUH7k9ZJI

Is your diabetes well controlled? Have you tried any alternative or complementary therapies to help with the pain?

asteeleks | @asteeleks | 4 days ago

In reply to @johnbishop "Hi Andy @asteeleks, I can't imagine how difficult it is to deal with the additional pain..." + (show)

My diabetes is very well controlled. I use Chiropractic care, dry needling and I have used a TENS Unit but found better relief with an ALPHA Stem unit. I use Tiger Balm Patches. My behavioral Counselor has me doing self hypnotics and music therapy. Recently nothing has helped. My Neurologist is going to try Qutenza Patches, starting Monday.

wig22 | @wig22 | 3 days ago

I have Breast cancer with liver mets only since 2013..original lobular and ductal 2007 stage 2B ..been on hormone blockers and CD4K oral meds since 2013
Been experiencing numbness of fingertips for years and more recently feet ..not numbness but sensitivity..still walk a lot but finding dificult to get good shoes..any advice would be welcome ..not sure if this is neuropathy as never discussed with onco doc..