Slowing the progression of PN

Posted by aussi @aussi, Aug 10 11:42pm

I am 80 years old, male and active.
I have both motor and sensory PN caused by the application of the drug Linezolid to treat a severs lung infection. The drug was stopped in October 2023.
My PN has noticeably affected feet, hands and hearing.
My feet are causing me the most concern as the effects have already
moved from toes to most of my feet pads and causing cramps in feet and ankles.
Can I take action to slow the progress of PN in my feet and hands, eg use of feet vibrators to increase blood supply, using compression gloves or stockings, etc
I already walk a lot, do pilates and play golf.

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Welcome @aussi, I'm 81 and not as active as I should be but I do make sure I get 30 to 45 minutes a day on my exercise bike along with a few other exercises during the day. Slowing the progression is probably the one biggest question we all have with neuropathy. Back in 2016 I had the opportunity to listen to an 80+ year old neurologist from the University of Minnesota talk at the now gone by the wayside Minnesota Neuropathy Association. One thing he said that stuck with me was that if you live long enough you will get neuropathy as nerve cells die like any other cells in the body. I have idiopathic small fiber PN and shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

You might find it helpful to scan through the other related discussions on slowing neuropathy progression. Here's a link that shows the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=slowing%20neuropathy%20progression.

The Foundation for Peripheral Neuropathy has a lot of great webinars on their YouTube channel that you might find helpful - https://www.youtube.com/@foundationforperipheralneu4122/search?query=progression.

I think being active and staying active is one of the best things you can do to help yourself. One of the things I think that is often overlooked by men (including me!) is keeping the skin on the legs and feet moisturized so that it doesn't get really dry. The peripheral nerves are next to the skin so it just seems logical for me. I use a brand called LifeFlo Magnesium Lotion at night and it does make my legs feel better. Do you use any skin lotions?

REPLY
@johnbishop

Welcome @aussi, I'm 81 and not as active as I should be but I do make sure I get 30 to 45 minutes a day on my exercise bike along with a few other exercises during the day. Slowing the progression is probably the one biggest question we all have with neuropathy. Back in 2016 I had the opportunity to listen to an 80+ year old neurologist from the University of Minnesota talk at the now gone by the wayside Minnesota Neuropathy Association. One thing he said that stuck with me was that if you live long enough you will get neuropathy as nerve cells die like any other cells in the body. I have idiopathic small fiber PN and shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

You might find it helpful to scan through the other related discussions on slowing neuropathy progression. Here's a link that shows the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=slowing%20neuropathy%20progression.

The Foundation for Peripheral Neuropathy has a lot of great webinars on their YouTube channel that you might find helpful - https://www.youtube.com/@foundationforperipheralneu4122/search?query=progression.

I think being active and staying active is one of the best things you can do to help yourself. One of the things I think that is often overlooked by men (including me!) is keeping the skin on the legs and feet moisturized so that it doesn't get really dry. The peripheral nerves are next to the skin so it just seems logical for me. I use a brand called LifeFlo Magnesium Lotion at night and it does make my legs feel better. Do you use any skin lotions?

Jump to this post

John, has anyone else posted about a lotion or cream that helps with the dryness? I agree that my symptoms are better at night if I've moisturized my legs. I'm trying to find an effective moisturizer that is not greasy and I can used during the day as well as at night.

REPLY
@robindancer5678

John, has anyone else posted about a lotion or cream that helps with the dryness? I agree that my symptoms are better at night if I've moisturized my legs. I'm trying to find an effective moisturizer that is not greasy and I can used during the day as well as at night.

Jump to this post

There are a couple of discussions on the topic where you can read what others have shared.

-- Topical Magnesium Lotion for Feet: https://connect.mayoclinic.org/discussion/topical-magnesium-lotion-for-feet/
-- Topical creams and lotions for Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/topical-creams-and-lotions-for-small-fiber-neuropathy/

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I have Chronic and Severe Sensorimotor Axonal Polyneuropathy plus CMT2 and CMT4B. These are incurable and progressive diseases and I’ve basically lost all sensation in my legs, feet, arms, hands, and fingers. I get PT and massage therapy twice a week to “slow down” the progression of the polyneuropathy. Walking is difficult and my balance is awful but I get around with a cane.

REPLY
@johnbishop

Welcome @aussi, I'm 81 and not as active as I should be but I do make sure I get 30 to 45 minutes a day on my exercise bike along with a few other exercises during the day. Slowing the progression is probably the one biggest question we all have with neuropathy. Back in 2016 I had the opportunity to listen to an 80+ year old neurologist from the University of Minnesota talk at the now gone by the wayside Minnesota Neuropathy Association. One thing he said that stuck with me was that if you live long enough you will get neuropathy as nerve cells die like any other cells in the body. I have idiopathic small fiber PN and shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

You might find it helpful to scan through the other related discussions on slowing neuropathy progression. Here's a link that shows the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=slowing%20neuropathy%20progression.

The Foundation for Peripheral Neuropathy has a lot of great webinars on their YouTube channel that you might find helpful - https://www.youtube.com/@foundationforperipheralneu4122/search?query=progression.

I think being active and staying active is one of the best things you can do to help yourself. One of the things I think that is often overlooked by men (including me!) is keeping the skin on the legs and feet moisturized so that it doesn't get really dry. The peripheral nerves are next to the skin so it just seems logical for me. I use a brand called LifeFlo Magnesium Lotion at night and it does make my legs feel better. Do you use any skin lotions?

Jump to this post

Thank you John [@johnbishop]
I have used the Foundation references but do not use a moisturiser as have not had the need as yet. Will keep that in mind though as we progress

REPLY

I’ve found that Turmeric 500mg 3x day has helped greatly to reduce my leg and feet numbness, pain, stabbing.

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@robindancer5678

John, has anyone else posted about a lotion or cream that helps with the dryness? I agree that my symptoms are better at night if I've moisturized my legs. I'm trying to find an effective moisturizer that is not greasy and I can used during the day as well as at night.

Jump to this post

Theraplex Hydrolotion is a water based lotion that does not have a lot of glycerin in it. The dermatologist recommended it. You have to order online and it’s not cheap but it works. They also have a cream I use on my hands that has 1% cortisone that helps when my hands hurt.

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