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.

John, Volunteer Mentor | @johnbishop | Jan 8, 2022

In reply to @kskill39 "My toes hurt with or without socks. It feels like every nail is ingrown" + (show)

Hi @kskill39, I noticed you haven't posted in awhile and was just wondering how you are doing with your feet and toes in particular. You mentioned they hurt with or without socks. I have a few hammer toes on each foot and sometimes the toenails seem to dig in and cause a little pain. I try to keep them trimmed but it can be difficult. Before I had to start wearing compression socks I found some really soft socks made from bamboo fiber that were really comfortable and seemed to make my feet feel much better.

Are you still having pain with your toes?

fredamm | @fredamm | Jan 9, 2022

In reply to @jetsetter "I'm so glad you finally got some relief! Thank you" + (show)

Thank you.

Jim, Volunteer Mentor | @jimhd | Jan 10, 2022

In reply to @kwfinnie "thankyou for an overview of your experiences. You gave me insight to alternatives for me. I..." + (show)

@kwfinnie @fredamm I wish a medication could be found to relieve the pain in my feet and ankles. Actually, instead of 7-9 pain pre IVig, I don't really notice the pain. It's there, and some things trigger it, like standing still, driving and sitting down, which seems kinda weird, but after sitting for a while, the pain decreases.

I do have balance problems, and sometimes I get dizzy. If I don't take action, I'd pass out. The balance tends to be when I stand up and turn. And I'd be in trouble if I had to do a sobriety test like you see on Cops. I have at this point mild autonomic neuropathy.

Some of the balance and dizziness could be related to my heart. I recently did a 7 day monitor, and it registered 1620 SVT episodes, the longest one lasting 26 minutes. It's a condition that causes tachycardia.

Time to have our nightly couples devotion, so I need to stop. The Lord bless you, as well.

Jim

hair127 | @hair127 | Jan 11, 2022

In reply to @venki "Take Nerve conduction test." + (show)

I have a Hair salon. A lady came in saying she had Prenthial Nerapthy. Her feet hurt so bad. She also could not sleep. I told her my sister takes an old anti-depressant to sleep! This lady asked her Doc for Elivil..like my sister takes. Now her FEET DON"T HURT! So another lady came in, the same problem! I told her! She got the old anti-depressant Elivil from her Doc! Now her feet don't hurt! Just saying!!!!!

fredamm | @fredamm | Jan 11, 2022

This Neuropathy is pretty interesting. In many ways it is elusive. I do take duloxetine (Cymbalta ) plus the pregabilin. Most of the time it relieves a good amount of the pain. Then, for some reason, can't pinpoint it, it will flare up. I try all the tricks mentioned in this sharing column. I even walked in the snow to cool off my feet. It felt good. As was said, standing still is the killer.
Good luck everyone. Stay calm and carry on. 🙂

pacer3702 | @pacer3702 | Jan 12, 2022

In reply to @hair127 "I have a Hair salon. A lady came in saying she had Prenthial Nerapthy. Her feet..." + (show)

The generic name for Elavil is amitriptyline. Neurologists commonly prescribe it for pain control in PN. It is what I take. I couldn't tolerate gabapentin or Lyrica. They affected my mood.

saylor479 | @saylor479 | Jan 13, 2022

In reply to @pacer3702 "The generic name for Elavil is amitriptyline. Neurologists commonly prescribe it for pain control in PN...." + (show)

My pain management Dr put me on amitriptyline, for radiating nerve pain. What are some of the side effects of this drug over long term?

John, Volunteer Mentor | @johnbishop | Jan 13, 2022

In reply to @saylor479 "My pain management Dr put me on amitriptyline, for radiating nerve pain. What are some of..." + (show)

Hi @saylor479, Here's some information I found on side effects of Amitriptyline.

"Amitriptyline is safe to take for a long time. There do not seem to be any lasting harmful effects from taking it for many months or years." --- Amitriptyline: an antidepressant medicine - NHS: https://www.nhs.uk/medicines/amitriptyline-for-depression/