Living with Neuropathy - Welcome to the group

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?

Thanks John…..exhaustive article….but will take to my primary care doctor.

REPLY
@steeldove

@johnbishop An interesting, but lengthly article from a medical journal https://onlinelibrary.wiley.com/doi/10.1111/jns.12298

Jump to this post

@steeldove Thank you for sharing the Small‐fiber neuropathy: Expanding the clinical pain universe article — https://onlinelibrary.wiley.com/doi/10.1111/jns.12298. It was indeed very interesting. The one fact that stood out for me was the over half of SFN patients diagnosis the cause can't be identified.

REPLY
@steeldove

@johnbishop An interesting, but lengthly article from a medical journal https://onlinelibrary.wiley.com/doi/10.1111/jns.12298

Jump to this post

@steeldove is there some way to translate this into understandable language? This is way too deep for me.

REPLY

research=info=better drugs??? hopefully in our lifetime.

REPLY
@johnbishop

@gramm I also have severe carpal tunnel in my hands and sometimes at night when I'm sleeping on my side I will get the tingling and numbness in my hands, wrists and arms which wakes me up. I am usually able to shake it off after a few minutes though. Have you tried any hand exercises to help?

Therapeutic Exercise Program for Carpal Tunnel Syndrome
https://orthoinfo.aaos.org/en/recovery/carpal-tunnel-syndrome-therapeutic-exercise-program/

Jump to this post

Thank you for the hand exercises. I will definitely try these. Anything that helps is good, especially if it’s not more medication.

REPLY
@johnbishop

Hello @gramm, Welcome to Connect. I know the tingling and burning in your hands and wrists can be awful especially when it wakes you up and keeps you awake. Have you been diagnosed with neuropathy by a neurologist or doctor? Does the burning and tingling symptoms occur during the daytime also?

Jump to this post

My doctor diagnosed it. I’m on naproxen for it but am unable to take the full dosage as it makes me too sleepy during the day.

The burning occurs at night when I’m in bed. Otherwise I just have numbness in my hands. My hands are also quite clumsy now too.

REPLY
@wgatap21

Thx…avoiding the shot! Hoping for a better solution! Good luck and feel better

Jump to this post

I tried the shots 2 different times! Didn’t work

REPLY
@gramm

My doctor diagnosed it. I’m on naproxen for it but am unable to take the full dosage as it makes me too sleepy during the day.

The burning occurs at night when I’m in bed. Otherwise I just have numbness in my hands. My hands are also quite clumsy now too.

Jump to this post

I have peripheral neuropathy in my feet and hands. I have to keep my feet and hands out from under the covers or I wake up in pain. Once I remove them from under the covers and they cool off I can go back to sleep.

REPLY
@johnhans

@steeldove is there some way to translate this into understandable language? This is way too deep for me.

Jump to this post

My thoughts exactly

REPLY
@johnbishop

@steeldove Thank you for sharing the Small‐fiber neuropathy: Expanding the clinical pain universe article — https://onlinelibrary.wiley.com/doi/10.1111/jns.12298. It was indeed very interesting. The one fact that stood out for me was the over half of SFN patients diagnosis the cause can't be identified.

Jump to this post

@johnbishop @fonda The article is from Journal of the Peripheral :Nervous System

REPLY
@johnhans

@steeldove is there some way to translate this into understandable language? This is way too deep for me.

Jump to this post

@johnhans Perhaps your neurologist can explain to you how information in the article applies to your case.

REPLY
@steeldove

@johnhans Perhaps your neurologist can explain to you how information in the article applies to your case.

Jump to this post

@steeldove I need to change my neurologist since I changed insurance so I will see what the new one says this summer when I have my yearly checkup for neuropathy.

Liked by steeldove

REPLY
@gramm

I’ve not been tested for neuropathy but have been tested for carpal tunnel. I do have severe carpal that I refuse surgery for because I’m handicapped and non-ambulatory, so use my hands and arms to move from wheelchair to toilet, etc. My doctor has checked and says I have neuropathy though too.

I get the numbness during the daytime but seldom the pain. I’ve had to give up my knitting and crochet work because of it. I also drop things a lot.

Jump to this post

@gramm My wife has had surgery on both of her wrists. She had been able only to knit for a few minutes until she hurt too much. After surgery, with a really quick recovery, she could knit all day without pain. I echo what @johnhans says about getting assistance for the few days of recovery.
Jim

Liked by johnhans

REPLY
@wilcy

I tried the shots 2 different times! Didn’t work

Jump to this post

Thank you for sharing your experience.

REPLY
@fredjan2016

I have peripheral neuropathy in my feet and hands. I have to keep my feet and hands out from under the covers or I wake up in pain. Once I remove them from under the covers and they cool off I can go back to sleep.

Jump to this post

I have to try to keep my hands straight down by my sides. Sometimes that works.

REPLY
Please login or register to post a reply.