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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.

Profile picture for catwoman50
catwoman50 | @catwoman50 | Jul 1 1:14pm
In reply to @johnbishop "Hello @catwoman50, Welcome to Connect. I'm not diabetic but have been in the pre-diabetes category for..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello @catwoman50, Welcome to Connect. I'm not diabetic but have been in the pre-diabetes category for most of my adult life and have suspected it may be partially the reason why I have neuropathy although I have been diagnosed (sort of) with idiopathic small fiber peripheral neuropathy. I don't have any pain but do have the numbness and some tingling which does cause me to have balance problems. The Foundation for Peripheral Neuropathy has a YouTube channel with a few webinars on diabetic neuropathy and foot and balance problems. They are great for learning more about the condition. Here's a link to the videos - https://www.youtube.com/@foundationforperipheralneu4122/search,

There are also quite a few discussions on diabetic neuropathy what helps where you can learn what others have shared - https://connect.mayoclinic.org/search/discussions/

Have you tried any exercise or therapy to help with the balance related issues?

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@johnbishop I have not had my feet analysed medically - they have had a diabetic scan for the pulse and they say they can hear a pulse OK there - itis the way it has effected my walking the really up sets me as I love long walks and I cycled too - my walks were also effected with Osteoarthritis in my knees - I feel when stood still like my feet are like a rocker and I can sway forward - I do exercises for my Ankles and toe ones as at first I thought it was due to blood circulation or lack of due to Mobility issues - but still have a Numb feeling in toes - will look at those videos - Thank You john

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catwoman50 | @catwoman50 | Jul 1 1:31pm
In reply to @johnbishop "Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hello Sally (@sallymagint), welcome to Mayo Connect, we are so glad you found us. This is a great place to ask questions, share your story and learn about others with similar health issues and possible treatments. Neuropathy can be difficult to comprehend sometimes due to number of different types, diagnosis and possible treatments. It's pretty awesome you have found some experienced specialists that are helping you. That is a big step.

Do you have a diagnosis you can share?

Mine is idiopathic small fiber peripheral neuropathy plus a few more issues. I have to share a story about the idiopathic diagnosis. I was at a Minnesota Neuropathy Association that had 3 different speakers. There was a short questions and answers session after each speaker. The first two speakers were asked the same question - how many people around the world are affected by peripheral neuropathy? The first speaker said the number was around 20 million or so. The second speaker said including China about 80 million had some form of neuropathy. The third speaker, an 80+ year old neurologist who still had a small practice and is doing research at the University of Minnesota to develop a inexpensive test to determine if you have peripheral neuropathy, said "in deference to my younger colleagues, idiopathic was named after the idiot neurologist who did the diagnosis. If you live long enough everyone gets neuropathy because the nerves will eventually start dying off". He drew the biggest laugh from the crowd.

Hoping for some answers for you.

John

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@johnbishop was wondering How you get the Medical Diagnosis from ? if that is not a silly Question and how to go about finding the right persons ?

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1 reply
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cork | @cork | Jul 1 2:33pm

Have dealt with increasing neuropathy for almost 10 years. It began after a long hot walk on concrete and then standing on concrete for another 30 minutes. The discomfort in legs and feet were slight at first and sometimes unnoticeable. However year after year my lower. legs ( not my feet) became more and more uncomfortable with aching, tightness (no swelling) and numbness. I began wearing compression socks and trying to avoid standing in one position for long periods of time. This has helped. I began acupuncture with electrical stimulation on my legs and feet and continued for about a year. This helped. We moved and I started laser treatments which were helpful but very expensive. Since stopping laser my feet have become involved, the discomfort or pain travels past my knees into the thigh and I am having difficulty with balance. I continue to exercise a hour or more daily but am not sure how long I will be able to continue.

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1 reply
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Mentor
John, Volunteer Mentor | @johnbishop | Jul 1 2:42pm
In reply to @catwoman50 "@johnbishop was wondering How you get the Medical Diagnosis from ? if that is not a..." + (show)
Profile picture for catwoman50 @catwoman50

@johnbishop was wondering How you get the Medical Diagnosis from ? if that is not a silly Question and how to go about finding the right persons ?

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@catwoman50 - There are no silly questions! Here's some information on diagnosing and treating peripheral neuropathy from Mayo Clinic - https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067. Normally a neurologist is the specialist to see.

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Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Jul 1 2:54pm
In reply to @cork "Have dealt with increasing neuropathy for almost 10 years. It began after a long hot walk..." + (show)
Profile picture for cork @cork

Have dealt with increasing neuropathy for almost 10 years. It began after a long hot walk on concrete and then standing on concrete for another 30 minutes. The discomfort in legs and feet were slight at first and sometimes unnoticeable. However year after year my lower. legs ( not my feet) became more and more uncomfortable with aching, tightness (no swelling) and numbness. I began wearing compression socks and trying to avoid standing in one position for long periods of time. This has helped. I began acupuncture with electrical stimulation on my legs and feet and continued for about a year. This helped. We moved and I started laser treatments which were helpful but very expensive. Since stopping laser my feet have become involved, the discomfort or pain travels past my knees into the thigh and I am having difficulty with balance. I continue to exercise a hour or more daily but am not sure how long I will be able to continue.

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Welcome @cork, It's good to hear that you are keeping up with the daily exercise. At 83 I try to do the same thing. It does help. Not sure if you are familiar with the Foundation for Peripheral Neuropathy but they have some helpful suggestions on healthy lifestyles here - https://www.foundationforpn.org/lifestyles/.

I also wear compression socks but they don't really help my neuropathy but they do help control the swelling in my legs from lymphedema which is another nasty condition I am blessed with. Lots of great discussions in the Neuropathy Support group if you haven't checked them out already - https://connect.mayoclinic.org/group/neuropathy/.

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2 replies
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cork | @cork | Jul 1 3:30pm
In reply to @johnbishop "Welcome @cork, It's good to hear that you are keeping up with the daily exercise. At..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Welcome @cork, It's good to hear that you are keeping up with the daily exercise. At 83 I try to do the same thing. It does help. Not sure if you are familiar with the Foundation for Peripheral Neuropathy but they have some helpful suggestions on healthy lifestyles here - https://www.foundationforpn.org/lifestyles/.

I also wear compression socks but they don't really help my neuropathy but they do help control the swelling in my legs from lymphedema which is another nasty condition I am blessed with. Lots of great discussions in the Neuropathy Support group if you haven't checked them out already - https://connect.mayoclinic.org/group/neuropathy/.

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@johnbishop thank you very much. I will check them out.

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cork | @cork | Jul 1 4:49pm
In reply to @johnbishop "Welcome @cork, It's good to hear that you are keeping up with the daily exercise. At..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Welcome @cork, It's good to hear that you are keeping up with the daily exercise. At 83 I try to do the same thing. It does help. Not sure if you are familiar with the Foundation for Peripheral Neuropathy but they have some helpful suggestions on healthy lifestyles here - https://www.foundationforpn.org/lifestyles/.

I also wear compression socks but they don't really help my neuropathy but they do help control the swelling in my legs from lymphedema which is another nasty condition I am blessed with. Lots of great discussions in the Neuropathy Support group if you haven't checked them out already - https://connect.mayoclinic.org/group/neuropathy/.

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👍

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harrie123 | @harrie123 | Jul 7 5:47pm
In reply to @johnbishop "Hi @dstewart318, I would like to add my welcome to Connect along with @rwinney and other..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

Hi @dstewart318, I would like to add my welcome to Connect along with @rwinney and other members. I don't know much about Reflex Sympathetic Dystrophy Syndrome other than it is a subdivision of Complex Regional Pain Syndrome - CRPS type I (reflex sympathetic dystrophy). I did find some information about it on the National Organization for Rare Disorders database here:
https://rarediseases.org/rare-diseases/reflex-sympathetic-dystrophy-syndrome/
I also found some other information that may be helpful if you haven't already seen it.

NIH - Complex Regional Pain Syndrome Fact Sheet
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet?

Have you found any treatments that help you when it flares up?

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@johnbishop my first RSD was awful‼️. The Doc ordered PT to do a desensitization regimen. It got me from a 10 to about a 5, so it was worth it. The rest just took time, patience and fortitude!
Currently I am dealing with RSD/CRPS in my hand following a broken wrist. Here we go again
Sorry you are having to go through this.
Harrie

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1 reply
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | 1 day ago

For all of our military veterans out there with neuropathy navigating treatments with the Veterans Administration, I thought this upcoming Foundation for Peripheral Neuropathy webinar might be helpful.

Beyond the uniform: Navigating PN as a veteran
A Foundation for Peripheral Neuropathy webinar
Tuesday, July 21, 2026 - 10:00 AM Central Daylight Time
Register: https://event.on24.com/wcc/r/5405959/B999D02FC19B2D505817749C6555BC5D
-------------------
As we celebrate Independence Day and the 250th anniversary of the United States, we proudly honor and thank our veterans for their service and sacrifice. We also recognize the lasting health challenges many continue to face long after their military service ends.

Peripheral neuropathy affects many veterans, but the symptoms are often overlooked or mistaken for other health issues. Join Army National Guard veteran and advocate Lexi Mitchell, along with veterans living with neuropathy, for a discussion about recognizing symptoms, understanding possible military-related causes, and finding the care and support you need. Learn about toxic exposures, the PACT Act, VA resources, treatment options, and ways to manage daily challenges. This webinar will provide practical information and personal insights to help veterans advocate for their health and access the care they deserve.

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Profile picture for heisenberg34
heisenberg34 | @heisenberg34 | 22 hours ago
In reply to @harrie123 "@johnbishop my first RSD was awful‼️. The Doc ordered PT to do a desensitization regimen. It..." + (show)
Profile picture for harrie123 @harrie123

@johnbishop my first RSD was awful‼️. The Doc ordered PT to do a desensitization regimen. It got me from a 10 to about a 5, so it was worth it. The rest just took time, patience and fortitude!
Currently I am dealing with RSD/CRPS in my hand following a broken wrist. Here we go again
Sorry you are having to go through this.
Harrie

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@harrie123 Sounds like you found a great PT. Unfortunately, my experience has been less than great. I went about a year and a half ago. The PT had me do some standard exercises, then gave me a printed sheet of exercises. I noticed that another patient had the exact same sheet although she had a different problem. How do you find a PT who will study your medical history and set up a customized program of exercises/ Somebody tell me, please!

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