1. < Neuropathy
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.

clark1 | @clark1 | Jan 21, 2023
In reply to @johnbishop "Hello @clark1, Welcome to Connect. My favorite sites for learning more about Neuropathy and possible treatments..." + (show)
@johnbishop

Hello @clark1, Welcome to Connect. My favorite sites for learning more about Neuropathy and possible treatments are these two:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Here are a few discussions on neuropathy that you might find helpful for learning about treatments and coping methods:
-- Neuropathy 101 - Knowledge is power?: https://connect.mayoclinic.org/discussion/neuropathy-101-knowledge-is-power/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Neuropathy Pain at Night: What helps?:
https://connect.mayoclinic.org/discussion/night-pain-2/
-- Neuropathy - What physical activities help?:
https://connect.mayoclinic.org/discussion/neuropathy-22/.
Do you mind sharing a little more about your diagnosis and any treatments you've tried?

Jump to this post

My diagnosis in March 2020 was "mild motor predominant length dependent peripheral neuropathy" after an Electromyography test at the Mayo Clinic Rochester. I was actually there for an appointment for my Restless Leg Syndrome a month or so earlier when the Neurologist noticed something during the exam that prompted her to schedule that test. My only symptoms at that time were rare occasional tingling in my foot...no pain.
Fast forward to the present, my syptoms are mostly continuous tingling with occasional daily cramping in my toes, and sudden blasts of sharp foot pain....which goes away within a minute.
I'm trying to prepare myself for what's to come. Besides RLS, I also have Tinnitus, which has become severe since 2018, and reacts to most meds with increased pulsing and volume.
I'm aware that most forums are frequented by people who are seeking help and have stories of severe reactions to diseases. But I'm looking for some positive feedback on treatments and lifestyle that allow you to live with this disease. My life has been a battle and I don't know how much fight I have left. I'm 71 years old. Thank you for listening.

REPLY
1 reply
SusanEllen66 | @SusanEllen66 | Jan 21, 2023

My large nerves were damaged when I came down with Vasculitis. It inflamed my medium arteries and the decreased blood flow damaged my nerves.
For me, I use Aspercream on my feet or anywhere else I hurt. It calms things down a bit.
Best wishes to you all.
Susan

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 21, 2023
In reply to @clark1 "My diagnosis in March 2020 was "mild motor predominant length dependent peripheral neuropathy" after an Electromyography..." + (show)
@clark1

My diagnosis in March 2020 was "mild motor predominant length dependent peripheral neuropathy" after an Electromyography test at the Mayo Clinic Rochester. I was actually there for an appointment for my Restless Leg Syndrome a month or so earlier when the Neurologist noticed something during the exam that prompted her to schedule that test. My only symptoms at that time were rare occasional tingling in my foot...no pain.
Fast forward to the present, my syptoms are mostly continuous tingling with occasional daily cramping in my toes, and sudden blasts of sharp foot pain....which goes away within a minute.
I'm trying to prepare myself for what's to come. Besides RLS, I also have Tinnitus, which has become severe since 2018, and reacts to most meds with increased pulsing and volume.
I'm aware that most forums are frequented by people who are seeking help and have stories of severe reactions to diseases. But I'm looking for some positive feedback on treatments and lifestyle that allow you to live with this disease. My life has been a battle and I don't know how much fight I have left. I'm 71 years old. Thank you for listening.

Jump to this post

You are not alone 🤗
-- Have You Made Any Kind of Peace With Having Your Neuropathy?
https://connect.mayoclinic.org/discussion/have-you-made-any-kind-of-peace-with-having-your-neuropathy/
-- Living Well with Neuropathy:
https://www.foundationforpn.org/living-well/

REPLY
clark1 | @clark1 | Jan 21, 2023

Are there different degrees of severity with Periferal Neuropathy?

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1 reply
zav | @zav | Jan 21, 2023

Trying to taper down from lyrica 25 mg daily; have been on it just a couple of weeks after switching from gabapentin; lyrica is causing blurred vision. The neuropathy is spreading upwards from feet and is scary!

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2 replies
clark1 | @clark1 | Jan 21, 2023

I don't have pain when I walk and am steady. There are plenty of steps in my house for exercise and at this point I I can negotiate them just fine. They have kept me in shape.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 21, 2023
In reply to @clark1 "Are there different degrees of severity with Periferal Neuropathy?" + (show)
@clark1

Are there different degrees of severity with Periferal Neuropathy?

Jump to this post

If by different degrees of severity you mean pain levels and impact on quality of life, I would say a big yes, depending on which type of neuropathy you have.

-- https://neuropathycommons.org/neuropathy/neuropathy-overview

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 21, 2023
In reply to @zav "Trying to taper down from lyrica 25 mg daily; have been on it just a couple..." + (show)
@zav

Trying to taper down from lyrica 25 mg daily; have been on it just a couple of weeks after switching from gabapentin; lyrica is causing blurred vision. The neuropathy is spreading upwards from feet and is scary!

Jump to this post

Hi @zav, Welcome to Connect. Have you talked with your doctor about the blurred vision symptoms from the lyrica?

REPLY
1 reply
zav | @zav | Jan 21, 2023
In reply to @johnbishop "Hi @zav, Welcome to Connect. Have you talked with your doctor about the blurred vision symptoms..." + (show)
@johnbishop

Hi @zav, Welcome to Connect. Have you talked with your doctor about the blurred vision symptoms from the lyrica?

Jump to this post

I have, which is why I am holding at 25 mg. Have a weekly telehealth visit now, and come next week lyrica will be gone or tapered down. Was curious what others have discovered.

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