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Moderator

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.

julbpat | @julbpat | Mar 20 2:40pm
In reply to @leelou03 "Hello,, my neuropathy started about a year ago, in my feet. They burn. My neurologist just..." + (show)
@leelou03

Hello,, my neuropathy started about a year ago, in my feet. They burn. My neurologist just upped my cymbalta, That's not working. I take Turmeric, it helps some. Id like to find something else. I can't take Gabapentin. Makes me goofier lol

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After taking Gabapentin and Lyrica, I switched to Tegretol(carbamazepine). It has worked very well for me. I take 1000mg/day.

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Debbie | @dbeshears1 | Mar 21 7:38am
In reply to @julbpat "One of my favorite activities for at least 20 years was a brisk 2 mile morning..." + (show)
@julbpat

One of my favorite activities for at least 20 years was a brisk 2 mile morning walk. Well, I CAN walk now of course. I could even run if something was chasing me! But the pleasure? That’s gone. It’s more like a grim task. Every tiny muscle fiber from my hips to my toes hurts. And the pain intensifies as I proceed. I finally have to find a place to sit - a stranger’s porch? So I could take a walk in my neighborhood on this beautiful Spring day. But why? Same with biking. I went a year without getting on my bike. I used to take a ride in my lovely neighborhood almost every evening in the summer. I tried it a few months ago. Oh my God. This time not only my lower body hurt, but my hands, shoulders, neck …
So off I go to the indoor pool! I do some pool calisthenics and swim laps. For years I said “please don’t tell me I have to swim for exercise”, yet here I am.

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@julbpat You find the pool easy? I do too, getting in and doing the exercises. What discourages me is the effort to pry myself out of the wet bathing afterward 🤪. I’m normal size, but with PN affecting my hands, it’s a challenge, even with great suggestions from folks here. But I do take advantage of the outdoor pool where I can sit, rest, and dry out afterward!

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1 reply
julbpat | @julbpat | Mar 21 8:17am

Getting out of that swimsuit can be torture when my hands are hurting (like today). I’ve wondered what would happen if I got it stuck around my face and called out for help! Or maybe scissors ??? Yes, I know I can wear something looser, not even a real swimsuit. But I still have enough pride to want to look as normal as possible. I wear a two piece with a swim skort. Even that is painful when my hands hurt like this.
I belong to a wellness center with an indoor pool, so can swim twice a week year-round. I honestly can’t handle the whole experience (spandex, lane-sharing, chilly locker room, spartan shower) more than that. And that’s okay.

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2 replies
jlnda | @jlnda | Mar 21 8:38am
In reply to @julbpat "Getting out of that swimsuit can be torture when my hands are hurting (like today). I’ve..." + (show)
@julbpat

Getting out of that swimsuit can be torture when my hands are hurting (like today). I’ve wondered what would happen if I got it stuck around my face and called out for help! Or maybe scissors ??? Yes, I know I can wear something looser, not even a real swimsuit. But I still have enough pride to want to look as normal as possible. I wear a two piece with a swim skort. Even that is painful when my hands hurt like this.
I belong to a wellness center with an indoor pool, so can swim twice a week year-round. I honestly can’t handle the whole experience (spandex, lane-sharing, chilly locker room, spartan shower) more than that. And that’s okay.

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Hi
I have only 1 hand that hurts with nerve pain. Began around 7 years ago in my index finger. Then spread to whole hand.
I can't imagine having this pain in both hands. If it was a foot I wouldn't be walking. I'm still looking for for why. Just had a thoracic MRI this morning. Already had head and cervical MRI'S. I am not diabetic and always ate whole foods. I certainly have empathy for you.

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Mar 21 8:52am
In reply to @jlnda "Hi I have only 1 hand that hurts with nerve pain. Began around 7 years ago..." + (show)
@jlnda

Hi
I have only 1 hand that hurts with nerve pain. Began around 7 years ago in my index finger. Then spread to whole hand.
I can't imagine having this pain in both hands. If it was a foot I wouldn't be walking. I'm still looking for for why. Just had a thoracic MRI this morning. Already had head and cervical MRI'S. I am not diabetic and always ate whole foods. I certainly have empathy for you.

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Welcome @jlnda, Since it's only in one of your hands do you think it might be Carpal Tunnel Syndrome? - https://www.mayoclinic.org/diseases-conditions/carpal-tunnel-syndrome/symptoms-causes/syc-20355603

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1 reply
Debbie | @dbeshears1 | Mar 21 9:23am
In reply to @jlnda "Hi I have only 1 hand that hurts with nerve pain. Began around 7 years ago..." + (show)
@jlnda

Hi
I have only 1 hand that hurts with nerve pain. Began around 7 years ago in my index finger. Then spread to whole hand.
I can't imagine having this pain in both hands. If it was a foot I wouldn't be walking. I'm still looking for for why. Just had a thoracic MRI this morning. Already had head and cervical MRI'S. I am not diabetic and always ate whole foods. I certainly have empathy for you.

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Like John, I was wondering if it could be carpal tunnel or other trapped nerve through wrist or elbow. Have they done an EMG of your arm! I hope you consider Physical Therapy regardless to see what exercises might help? Debbie

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2 replies
daj3333 | @daj3333 | Mar 21 9:46am
In reply to @leelou03 "Hello,, my neuropathy started about a year ago, in my feet. They burn. My neurologist just..." + (show)
@leelou03

Hello,, my neuropathy started about a year ago, in my feet. They burn. My neurologist just upped my cymbalta, That's not working. I take Turmeric, it helps some. Id like to find something else. I can't take Gabapentin. Makes me goofier lol

Jump to this post

Try low dose Naltrexone. It has helped me.

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1 reply
Ray Kemble | @ray666 | Mar 21 10:04am
In reply to @dbeshears1 "@julbpat You find the pool easy? I do too, getting in and doing the exercises. What..." + (show)
@dbeshears1

@julbpat You find the pool easy? I do too, getting in and doing the exercises. What discourages me is the effort to pry myself out of the wet bathing afterward 🤪. I’m normal size, but with PN affecting my hands, it’s a challenge, even with great suggestions from folks here. But I do take advantage of the outdoor pool where I can sit, rest, and dry out afterward!

Jump to this post

Hi, Debbie. I read all these posts about the benefits of swimming for those of us with PN, and I can't help but grind my teeth. 🙂 I never learned to swim. I tell friends that (swimmers, each and every one of them), and they say they find it hard to believe. As do I. I grew up a hop, skip, and jump from Long Island Sound and beaches galore. Frustrated with not being able to swim, when I was in junior high, I asked my parents if they send me off to get some swimming lessons. Which they did. But my coach was (or so he seemed) a disgruntled Marine D.I. who our lessons Hell on Earth (a wet, chlorinated Hell, I suppose). It was around then that I got out of the water, never to go back in again. I've got a few regrets these days now that I've got a little ol' PN (little?) that I never learned to swim. 🙁 ( 🙂 )

Ray

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3 replies
jlnda | @jlnda | Mar 21 10:20am
In reply to @dbeshears1 "Like John, I was wondering if it could be carpal tunnel or other trapped nerve through..." + (show)
@dbeshears1

Like John, I was wondering if it could be carpal tunnel or other trapped nerve through wrist or elbow. Have they done an EMG of your arm! I hope you consider Physical Therapy regardless to see what exercises might help? Debbie

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Hi Debbie,
I had carpal tunnel surgery and cubital tunnel surgery last Oct 31st.
My EMG Dr. said that I didn't have carpal tunnel but did have cubital.
Went ahead with both surgeries because pressing on the wrist made the pain worse.
I had had no pain relief. I believe it is probably now centralization of pain.
Touch nerve damage after so many years.
Tried to find an answer 5 years ago and wasn't taken seriously. Now I can't spread my fingers out like my left hand and have lost a lot of muscle because I can't put to much pressure on my fingers.

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jlnda | @jlnda | Mar 21 10:29am
In reply to @johnbishop "Welcome @jlnda, Since it's only in one of your hands do you think it might be..." + (show)
@johnbishop

Welcome @jlnda, Since it's only in one of your hands do you think it might be Carpal Tunnel Syndrome? - https://www.mayoclinic.org/diseases-conditions/carpal-tunnel-syndrome/symptoms-causes/syc-20355603

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Hi John,
Thanks for answering.
My EMG Dr. said no carpal tunnel, went ahead with surgery anyway . Also had cubital tunnel done.
Both on Oct 31st 23.
Have had no pain relief!

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