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.

cgs | @cgs | Feb 2, 2023

In reply to @michael149 "Ihad badsideeffectsandIhav enopainwithmyneuropahty" + (show)

I thank God you have no pain. I hope you can have someone help you.

michael149 | @michael149 | Feb 2, 2023

Itakeonehalfpillofeffexortwiceadayandapthelpsmeeercise3timesadayat9amand1pmand5pm

cgs | @cgs | Feb 2, 2023

In reply to @ga33 "I saw your email today and decided to join the group immediately. I have extensive experience..." + (show)

I understand,I am 73 and have diabetic neuropath
I take gabapentin and think and pray about the future and how it will be here in this life. I hope that there may be a medical treatment or discovery soon. I am ok on my medication I pray it will improve or at least stay as it is.

John, Volunteer Mentor | @johnbishop | Feb 2, 2023

In reply to @michael149 "Itakeonehalfpillofeffexortwiceadayandapthelpsmeeercise3timesadayat9amand1pmand5pm" + (show)

Hi @michael149, Welcome to Connect. It sounds like are taking effexor to help with your neuropathy along with PT that helps you exercise 3 times a day. Sorry you are having trouble with your keyboard and typing. If you are looking for other treatments to try, the Foundation for Peripheral Neuropathy has a list here - https://www.foundationforpn.org/treatments/.

Did I read your first post correctly that you have no pain with your neuropathy?

John, Volunteer Mentor | @johnbishop | Feb 2, 2023

In reply to @ga33 "I saw your email today and decided to join the group immediately. I have extensive experience..." + (show)

Hi @ga33, Welcome to Connect. Glad you found this discussion. It does help to live one day at a time and enjoy it the best you can. What helps me is to stay as active as I can and learn something new everyday...sometimes that something new is something I relearned 🙃

Do you have pain with your neuropathy or is it mostly numbness like mine?

michael149 | @michael149 | Feb 2, 2023

In reply to @johnbishop "Hi @michael149, Welcome to Connect. It sounds like are taking effexor to help with your neuropathy..." + (show)

correct Ihav en opain b utsomelackofcoordin ation of mybodyan dpermanen tnumb nessinmyfeet-Itiscausedb ytaking haldolf or48yrsforse veretourettesyn drome-Iha v etriedev erydrug for neuropathyaccordin g tommyneurologist

tony24 | @tony24 | Feb 2, 2023

In reply to @ga33 "I saw your email today and decided to join the group immediately. I have extensive experience..." + (show)

Hi I'm new here as well and I find it really helpful to converse with people that have similar problems. Everyone here seems really nice and helpful. It's a safe place and who knows maybe one of us will find a cure and share it here first lol. you never know. But people know stuff and their therapies could be helpful to you. I've found listening to Youtube, binaural beats for nerve regeneration to be helpful. Anyways welcome and keep living in the present moment and have hope.

tony24 | @tony24 | Feb 2, 2023

In reply to @kimegraves "Tony24 I find that riding a stationary bike improves my leg strength. I go to the..." + (show)

Thank you @kimegraves I appreciate your reply. I might have to give that a try. I have low energy and doing stuff is hard, I guess you could call it exercise intolerance but I don't know. I would like to move more and increase my strength, thanks for the advice and always stay hopeful.

lindawishart | @lindawishart | Feb 2, 2023

Can neuropathy be cured if not diabetes related

John, Volunteer Mentor | @johnbishop | Feb 2, 2023

In reply to @lindawishart "Can neuropathy be cured if not diabetes related" + (show)

Hi Linda, Welcome to Connect. The neuropathy symptoms can be treated but I don't believe I've read of a cure in reliable information. I have read that it may be possible to reverse diabetic neuropathy but there are a lot of unknowns involved. Also, my own personal opinion is that if the neuropathy is caused by nerve compression and that can be fixed to relieve the symptoms that might be considered a cure by some. The best chance we have is to learn as much as we can about our condition and what treatments are available that might help. Here are my two favorite sites for learning more:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Have you been diagnosed with neuropathy? Can you share a little more about your symptoms and any treatments you've tried?