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.

Leonard | @jakedduck1 | Mar 30 10:50am
In reply to @harley22 "I started applying Salonpas pain patches to the bottom of my feet for pain, and they..." + (show)
@harley22

I started applying Salonpas pain patches to the bottom of my feet for pain, and they do provide relief but my skin is so thin,when I pull them off,I also take off some of my thin skin, and then I’m bleeding and need bandaids!

Jump to this post

@harley22
I tried these then used fentanyl patches and didn't have any problems. Some people use baby or olive oil, or remove after taking a shower/bath. Alcohol may also work. I thought this product was discontinued? Hope one of these suggestions helps.
Good luck,
Jake

REPLY
1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Mar 30 3:56pm
In reply to @dieterreuther "Hello. At age 65, I was recently diagnosed with chronic idiopathic axonal polyneuropathy. After trying to..." + (show)
@dieterreuther

Hello. At age 65, I was recently diagnosed with chronic idiopathic axonal polyneuropathy. After trying to get answers from my PCP why my feet were bothering me at night and wearing socks in bed so that I could sleep, as well as a detour with orthopedic insoles which only made me walk funny, I finally found a neurologist who tested and diagnosed me. Things are getting worse and I started applying lidocaine patches to the bottom of my feet to get rest at night. I expect that I will be put on medication at my follow-up appointment with the neurologist.

I eat pretty healthy and have been running 10 Marathons since 2013 (the Boston Marathon bombing initiated my running). Currently I am scheduled to run the Chicago Marathon in October. However, I do feel my feet more and more when I run and hope that I will be able to continue my training. Is there any evidence that running might further damage my nerves? Or is good to challenge myself by continuing to run?

My peripheral neuropathy journey has just started and I look forward to learning from others as well as sharing what works for me.

Jump to this post

@dieterreuther Running can put wear on your spine. That happened to my cousin who jogged a lot and she ended up with a lumbar fusion with a cage. The spinal discs are your shock absorbers and those naturally dry out a bit with aging, and the discs can get thinner allowing the vertebrae bones to get closer together and the nerves exit the spine in those spaces between the vertebrae. Activities that pound on the discs can't be good especially running on hard pavement. If there any issues there to begin with, extra wear and tear may shorten the timeline to spine issues. I am a cervical spine fusion surgery patient.

I think it is great that you exercise as that has a lot of benefits. Would walking a marathon be satisfactory instead of running ? Just my thoughts... I'm not a runner. I wouldn't be able to do it anyway because of an ankle fracture 4 years ago that isn't as strong as before the injury. I have to accept the limits of what I can do. I do get beneficial strengthening exercise by riding my horse on trails just at a walk, and that does not cause me any pain. I am trying to strengthen the weaker leg in hopes of being able to hike again in the mountains.

Some neuropathy patients get benefits from myofascial release therapy which loosens up overly tight tissue. That can put a lot of pressure on the body and restrict fluid circulation and metabolic waste removal in the tissues. The fascia also does have some electrical conduction properties that would be inhibited if the tissue is dehydrated and tight. I have dealt with some tightness causing my ankle to collapse because of surgical scar tissue, and my loosening that up has helped the ankle to move better, get stronger and stop collapsing when I step off of it. I think the extra pressure would tweak the nerve running to my foot causing the pain and collapse to get my weight off of it.

Here is our discussion on Myofascial Release Therapy where you can learn more.
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Jennifer

REPLY
1 reply
joanland | @joanland | Mar 31 2:00am
In reply to @dieterreuther "Hello. At age 65, I was recently diagnosed with chronic idiopathic axonal polyneuropathy. After trying to..." + (show)
@dieterreuther

Hello. At age 65, I was recently diagnosed with chronic idiopathic axonal polyneuropathy. After trying to get answers from my PCP why my feet were bothering me at night and wearing socks in bed so that I could sleep, as well as a detour with orthopedic insoles which only made me walk funny, I finally found a neurologist who tested and diagnosed me. Things are getting worse and I started applying lidocaine patches to the bottom of my feet to get rest at night. I expect that I will be put on medication at my follow-up appointment with the neurologist.

I eat pretty healthy and have been running 10 Marathons since 2013 (the Boston Marathon bombing initiated my running). Currently I am scheduled to run the Chicago Marathon in October. However, I do feel my feet more and more when I run and hope that I will be able to continue my training. Is there any evidence that running might further damage my nerves? Or is good to challenge myself by continuing to run?

My peripheral neuropathy journey has just started and I look forward to learning from others as well as sharing what works for me.

Jump to this post

Hi dieterreuther, and welcome to a club you never dreamed of joining . . . I'm about 9 years into my PN journey. I have absolutely no medical teaching; I'm simply a patient, so take this or leave it. My feeling is to do as much exercise as you want and can while you can. I think the stronger a person is when they enter the more debilitating effects of this process, the slower the effects will be. I have nothing to back this up other than my experience. Be good to your feet, make certain you are with a medical provider you trust and have confidence in, and enjoy what gives you pleasure. (I only ran one marathon, many years ago, the Seaside Marathon, in Seaside, OR.)

REPLY
2 replies
schytil | @schytil | Mar 31 2:27am

Hi, I’m new to this group. I have joined to learn about treatments that might have helped people with neuropathy in their feet and legs.
My Mum is a retired Dental surgeon who believes she acquired neuropathy through exposure to mercury in her work.
There is some evidence that some of the neuropathy was acquired through Vit B 6 toxicity.
My Mum has tried various supplements from American companies none of which seem to have helped.
ATM she is fixated on a device NMES Foot Massager sold by Dr Jeremy Campbell. It is sold on the healthyinsightjournal.com website.
Does anyone have any experience with this product ?
Has it been beneficial?
Thanking you in advance
A concerned daughter.

REPLY
1 reply
harley22 | @harley22 | Mar 31 2:37am
In reply to @jakedduck1 "@harley22 I tried these then used fentanyl patches and didn't have any problems. Some people use..." + (show)
@jakedduck1

@harley22
I tried these then used fentanyl patches and didn't have any problems. Some people use baby or olive oil, or remove after taking a shower/bath. Alcohol may also work. I thought this product was discontinued? Hope one of these suggestions helps.
Good luck,
Jake

Jump to this post

Thanks Jake!

REPLY
daj3333 | @daj3333 | Mar 31 7:09am
In reply to @harley22 "I started applying Salonpas pain patches to the bottom of my feet for pain, and they..." + (show)
@harley22

I started applying Salonpas pain patches to the bottom of my feet for pain, and they do provide relief but my skin is so thin,when I pull them off,I also take off some of my thin skin, and then I’m bleeding and need bandaids!

Jump to this post

Instead of patches you can try Salonpas pain cream

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 31 7:42am
In reply to @schytil "Hi, I’m new to this group. I have joined to learn about treatments that might have..." + (show)
@schytil

Hi, I’m new to this group. I have joined to learn about treatments that might have helped people with neuropathy in their feet and legs.
My Mum is a retired Dental surgeon who believes she acquired neuropathy through exposure to mercury in her work.
There is some evidence that some of the neuropathy was acquired through Vit B 6 toxicity.
My Mum has tried various supplements from American companies none of which seem to have helped.
ATM she is fixated on a device NMES Foot Massager sold by Dr Jeremy Campbell. It is sold on the healthyinsightjournal.com website.
Does anyone have any experience with this product ?
Has it been beneficial?
Thanking you in advance
A concerned daughter.

Jump to this post

Welcome @schytil, I think it's great that you are helping watchout for your mother as there are a lot of so called miracle cure products on the market for neuropathy with not much science to back them. One of the first devices I tried for my neuropathy was a programmable TENS unit for my feet similar to the Nooro NMES device. I used it for several months and it didn't really help with my neuropathy although I only have numbness and some tingling. You might want to read through the recent reviews on the Better Business Bureau site which aren't very good - https://www.bbb.org/us/il/chicago/profile/health-and-wellness/nooro-inc-0654-1000095147/customer-reviews.

There is some good information on the Foundation for Peripheral Neuropathy on what helps - https://www.foundationforpn.org/treatments/. Since you mentioned your mother might have acquired neuropathy through Vitamin B6 toxicity, you might want to read what others have shared in this discussion on the topic:
--- B-6 vitamin danger!: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/

There are many different discussions on what helps neuropathy that you might find helpful. Here is a link showing the search results for Connect - https://connect.mayoclinic.org/search/discussions/?search=what%20helps%20neuropathy.

What has been the most bothersome neuropathy symptom for your mother?

REPLY
dieterreuther | @dieterreuther | Mar 31 4:30pm
In reply to @jenniferhunter "@dieterreuther Running can put wear on your spine. That happened to my cousin who jogged a..." + (show)
@jenniferhunter

@dieterreuther Running can put wear on your spine. That happened to my cousin who jogged a lot and she ended up with a lumbar fusion with a cage. The spinal discs are your shock absorbers and those naturally dry out a bit with aging, and the discs can get thinner allowing the vertebrae bones to get closer together and the nerves exit the spine in those spaces between the vertebrae. Activities that pound on the discs can't be good especially running on hard pavement. If there any issues there to begin with, extra wear and tear may shorten the timeline to spine issues. I am a cervical spine fusion surgery patient.

I think it is great that you exercise as that has a lot of benefits. Would walking a marathon be satisfactory instead of running ? Just my thoughts... I'm not a runner. I wouldn't be able to do it anyway because of an ankle fracture 4 years ago that isn't as strong as before the injury. I have to accept the limits of what I can do. I do get beneficial strengthening exercise by riding my horse on trails just at a walk, and that does not cause me any pain. I am trying to strengthen the weaker leg in hopes of being able to hike again in the mountains.

Some neuropathy patients get benefits from myofascial release therapy which loosens up overly tight tissue. That can put a lot of pressure on the body and restrict fluid circulation and metabolic waste removal in the tissues. The fascia also does have some electrical conduction properties that would be inhibited if the tissue is dehydrated and tight. I have dealt with some tightness causing my ankle to collapse because of surgical scar tissue, and my loosening that up has helped the ankle to move better, get stronger and stop collapsing when I step off of it. I think the extra pressure would tweak the nerve running to my foot causing the pain and collapse to get my weight off of it.

Here is our discussion on Myofascial Release Therapy where you can learn more.
Neuropathy - "Myofascial Release Therapy (MFR) for treating compression and pain"
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Jennifer

Jump to this post

Thank you for your comments and pointers @jenniferhunter. Sorry to hear about your injury and the challenges it caused. I will certainly keep everything in mind as my peripheral neuropathy progresses. I did have spinal stenosis surgery in 2004 and have repeatedly checked in with my doctors to make sure I am good with my running. ~ Dieter

REPLY
dieterreuther | @dieterreuther | Mar 31 4:38pm
In reply to @daj3333 "Instead of patches you can try Salonpas pain cream" + (show)
@daj3333

Instead of patches you can try Salonpas pain cream

Jump to this post

I do have various pain creams including Lidocaine Foot Pain Cream (4% Lidocaine), Topricin Pain relief Cream, and Maximum Strength Zostrix Capsaicin Cream (0.1% Capsaicin). So far the 4% Lidocaine Gel-Patches have been working the best for me. I cut one in half and apply one half to each foot and add tight socks. The gel feels cooling. I really like the Careland brand versus Welmate brand which was hard to apply.

REPLY
dieterreuther | @dieterreuther | Mar 31 4:40pm
In reply to @joanland "Hi dieterreuther, and welcome to a club you never dreamed of joining . . . I'm..." + (show)
@joanland

Hi dieterreuther, and welcome to a club you never dreamed of joining . . . I'm about 9 years into my PN journey. I have absolutely no medical teaching; I'm simply a patient, so take this or leave it. My feeling is to do as much exercise as you want and can while you can. I think the stronger a person is when they enter the more debilitating effects of this process, the slower the effects will be. I have nothing to back this up other than my experience. Be good to your feet, make certain you are with a medical provider you trust and have confidence in, and enjoy what gives you pleasure. (I only ran one marathon, many years ago, the Seaside Marathon, in Seaside, OR.)

Jump to this post

Sounds good @joanland. Thank you! I am keeping my fingers crossed that I can make it through this probably last Marathon. Many years ago when I lived in Portland OR I ran the Hood to Coast relay race several times which always ended in Seaside. Good memories!

REPLY
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