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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.

Ray Kemble | @ray666 | 3 days ago
In reply to @gregd1956 "Hi, @ray666, Meds, pills, drugs - I’m there. Before my TBI accident, 12 years ago, I..." + (show)
@gregd1956

Hi, @ray666,
Meds, pills, drugs - I’m there. Before my TBI accident, 12 years ago, I had nothing except I had a med to keep - I had no idea; my memory is gone most of that from my bicycle accident.

I was healthy on my body & brain and was working well at my city, but before my bicycle accident.and yes, I take meds -like you and the rest of us. No pain know 2 mths away one if my doctors (most during my TBI accisdent) “fixed” my lower back from my rear-ends down to my feet. The pains gone - 5-% - and the other 5o% keeps me to exercise my lower body from my right-side from my knee to the bottom of foot.

Thx,
Greg D.

Jump to this post

Good morning, Greg (@gregd1956)

I think it’s time well spent if each of us finds ourselves overrun by medications and supplements every so often and does an inventory, in conjunction with our medical advisors, of all those pills, powders, lotions, and liquids we’ve been accumulating.

Only this morning, my partner came to me with a plastic pill bottle she’d found in our downstairs bathroom medicine chest. “What’s this?” she asked. “I don’t know,” I answered. “It’s not mine. Could it be yours?” “I don’t think so,” was her reply.

See what I mean? 🙂

I wish you the best possible weekend, Greg.

Cheers!
Ray (@ray666)

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duaneh23 | @duaneh23 | 3 days ago

I was diagnosed with severe Axonal Neuropathy September 2024 but believe it started in 1976 after the Swine Flu vaccination at Fort Dix, New Jersey, shortly afterwards first 3-4 weeks Digested Problems, Nerves Problems with my Back then followed by many other problems.
Can anyone help me could it have started that from back I can’t get an answer from anywhere.

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maryandnans | @maryandnans | 19 hours ago

I was on gabapentin for 10 months and now I've been diagnosed with osteoporosis. I'm wondering I need to know is this precisely part of the cause or is it just we don't know it could be.

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maryandnans | @maryandnans | 18 hours ago

I was on gabapentin for 10 months and now I've been diagnosed with osteoporosis. I need to know is this precisely part of the cause or is it just we don't know it could be.

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SusanEllen66 | @SusanEllen66 | 13 hours ago

My neurologist told me yesterday that my terrible gait issues (crashing into walls etc ) is because of my PN. My feet are numb in many areas. I came home and started walking around the house barefoot. It made a huge difference. I was not so off balance.

Now I need to find shoes to wear outside…can’t go barefoot outside. It’s going to be 111 here today so my feet would be burnt to a crisp!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | 12 hours ago
In reply to @SusanEllen66 "My neurologist told me yesterday that my terrible gait issues (crashing into walls etc ) is..." + (show)
@SusanEllen66

My neurologist told me yesterday that my terrible gait issues (crashing into walls etc ) is because of my PN. My feet are numb in many areas. I came home and started walking around the house barefoot. It made a huge difference. I was not so off balance.

Now I need to find shoes to wear outside…can’t go barefoot outside. It’s going to be 111 here today so my feet would be burnt to a crisp!

Jump to this post

Hi @SusanEllen66, You might try Xero shoes or other brands that have zero drop soles. They are like walking barefoot with the exception of your foot is protected. I have several pairs that I switch back and forth with between my regular shoes Orthofeet which feel better and I can walk a little farther distances in but are a little more cushy and my balance is affected. The Xero drop sole shoes have very little padding in them although you can put orthotics in them if needed. - https://xeroshoes.com/

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1 reply
SusanEllen66 | @SusanEllen66 | 1 hour ago
In reply to @johnbishop "Hi @susanellen66, You might try Xero shoes or other brands that have zero drop soles. They..." + (show)
@johnbishop

Hi @SusanEllen66, You might try Xero shoes or other brands that have zero drop soles. They are like walking barefoot with the exception of your foot is protected. I have several pairs that I switch back and forth with between my regular shoes Orthofeet which feel better and I can walk a little farther distances in but are a little more cushy and my balance is affected. The Xero drop sole shoes have very little padding in them although you can put orthotics in them if needed. - https://xeroshoes.com/

Jump to this post

@johnbishop thank you! Actually I was just online researching and found shoes like that on Amaz..

I will check these out.

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