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.

Amanda Roe | @amandajro | Oct 2, 2021

In reply to @suzirtist "I would like to get feedback on dealing with nondiabetic neuropathy. It is ruling my life...." + (show)

Hello @suzirtist and welcome to Mayo Clinic Connect. I am sorry to read that your neuropathy is ruling your life. Let's see if we can make some connections here for you to take back your life, even if just baby steps.

First, since you mention you have non-diabetic neuropathy, I just wanted to make sure I have this right that your diagnosis was for Peripheral Neuropathy. Is that right? If so, here is some basic information you may have already come across.

- Peripheral Neuropathy:
https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061
Are you on any medication(s) right now for the neuropathy? How is this ruling your life?

madgemgunia | @madgemgunia | Oct 3, 2021

In reply to @amandajro "Hello @suzirtist and welcome to Mayo Clinic Connect. I am sorry to read that your neuropathy..." + (show)

Every minute is painful!!! Best described like folks sitting around a campfire visiting, but mu legs are in the fire!!!!It is never ending and effects by balance as well. Nothing has helped and I have good medical coverage as well. Terrible!!!

preknight | @preknight | Oct 3, 2021

In reply to @madgemgunia "Every minute is painful!!! Best described like folks sitting around a campfire visiting, but mu legs..." + (show)

I have a stabbing pain in my left foot only. Also no feeling in my feet and hands. And if I can go more than one month w/o falling, I consider that a victory. My neurologist prescribes a drug that allows me to sleep at night.

I am sorry to hear about your symptoms and hope you can find something to relieve your pain.

kenc | @kenc | Oct 3, 2021

Has anyone had experience w/ a pudendal block, or saddle block to reduce abdominal and rectal area pain?

silvern12 | @silvern12 | Oct 4, 2021

I am scheduled for the booster covid Pfizer shot on Wednesday and I have mixed feelings. Everyone I know has gotten it and no reaction. I was with fever and muscle aches after second shot only lasted a day. However since then I have been diagnosed with idiopathic axonal sensory motor peripheral neuropathy. I feel it in my feet stiff and partially numb. I also have been experiencing over a month violent migraine like headaches. All tests negative. Drs feel tmj and cervical arthritis. I am very concerned about getting the shot after reading all the comments. Is their any real evidence out there. Will be flying end of month to our new home in Arizona and I am around my young grandchildren so I do want to be protected. I worry either way. All these comments worry me to go ahead and get shot. Pharmacist didn’t have any information regarding neuropathy. Thankyou for any information that can be provided.

silvern12 | @silvern12 | Oct 4, 2021

Colleen do you or Mayo Clinic have any info regarding covid booster and neuropathy. I am unable to get appt with neurologist there.

John, Volunteer Mentor | @johnbishop | Oct 4, 2021

In reply to @silvern12 "Colleen do you or Mayo Clinic have any info regarding covid booster and neuropathy. I am..." + (show)

Hello @silvern12, I have not scheduled my COVID booster shot yet but plan to get one later this month or next month. I have small fiber peripheral neuropathy and have had both Pfizer shots with only the normal side effects that most have had. For me the worse being the extreme fatigue the second day after the 2nd shot. Here is some information from Mayo Clinic on the booster that you may find helpful:

Are COVID-19 vaccine boosters or extra shots recommended?: https://www.mayoclinic.org/coronavirus-covid-19/vaccine-boosters

silvern12 | @silvern12 | Oct 4, 2021

Thank you heard so many negative comments on blog has me concerned

bettyw | @bettywalbridge | Oct 4, 2021

I received my Pfizer booster two days ago. Reaction was the same as before with arm site non-severe pain and some fatigue. No different from the first two. Didn't seem to affect my peripheral neuropathy which is always a burden with no pain.