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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.

Mentor
John, Volunteer Mentor | @johnbishop | Nov 18, 2021
In reply to @levisdad "diagnostical results from testing" + (show)
@levisdad

diagnostical results from testing

Jump to this post

Hello @levisdad, Welcome to Connect. Am I correct that your neuropathy diagnosis was from diagnostical results from testing? Did you have an Electromyogram (EMG) Test & Nerve Conduction Study (NCS)?

REPLY
ubelinda | @ubelinda | Nov 19, 2021
In reply to @d13 "I will need to ask my daughter where she purchased. I don't know about putting it..." + (show)
@d13

I will need to ask my daughter where she purchased. I don't know about putting it on the hands. It is suggested not to rub the eyes after applying. Even when I roll it on my feet, I massage it in by just using both feet; one over and under the other one. So I never get it on my hands. I will get back with an answer about where you can purchase asap.

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Thank you for answering! I would rub it in my legs and feet, where the pain is. Blessings.

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1 reply
d13 | @d13 | Nov 19, 2021
In reply to @ubelinda "Thank you for answering! I would rub it in my legs and feet, where the pain..." + (show)
@ubelinda

Thank you for answering! I would rub it in my legs and feet, where the pain is. Blessings.

Jump to this post

She told me that she got it at a cannabis shop. So that would be the place to look for it. Dragon deep tissue salve roll up. Ingredients; cocoa butter, camphor oil, menthol, cannabis extracted oil. 3.4 oz. I don't know if you can get it online. You could google it. I sometimes wait an hour after applying and then apply again. Right before going to bed works the best for me. Good luck finding it. And hope it makes you feel better.

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1 reply
ubelinda | @ubelinda | Nov 19, 2021
In reply to @d13 "She told me that she got it at a cannabis shop. So that would be the..." + (show)
@d13

She told me that she got it at a cannabis shop. So that would be the place to look for it. Dragon deep tissue salve roll up. Ingredients; cocoa butter, camphor oil, menthol, cannabis extracted oil. 3.4 oz. I don't know if you can get it online. You could google it. I sometimes wait an hour after applying and then apply again. Right before going to bed works the best for me. Good luck finding it. And hope it makes you feel better.

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Thank you! Will look for this and try it. Blessings.

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1 reply
athenalee | @athenalee | Nov 20, 2021
In reply to @ubelinda "Thank you! Will look for this and try it. Blessings." + (show)
@ubelinda

Thank you! Will look for this and try it. Blessings.

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Its available online if you can’t find it locally.

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1 reply
ubelinda | @ubelinda | Nov 20, 2021
In reply to @athenalee "Its available online if you can’t find it locally." + (show)
@athenalee

Its available online if you can’t find it locally.

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Thank you! Blessings.

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Stretch | @stress | Nov 23, 2021

Hello kindred spirits. My main health concerns are all severe: pain, anxiety, insomnia and isolation.

Health was great until early 40’s, ~30 years earlier. MECFS evolved, which is neurological from stress, significant, and progressive. It is systemic, affecting multiple brain functions including cognitive,IBS and insomnia. Then Peripheral Neuropathy severely hit in feet, it too is systemic and progressive with high pain. I think these conditions are interrelated, neurologically. I’m functional but slow, getting more and more housebound.

I’m more or less tuned into the CFSME but not so much the related conditions. I’d like to see what we share in common, dealing with the symptoms et al. ✌️

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 23, 2021
In reply to @stress "Hello kindred spirits. My main health concerns are all severe: pain, anxiety, insomnia and isolation. Health..." + (show)
@stress

Hello kindred spirits. My main health concerns are all severe: pain, anxiety, insomnia and isolation.

Health was great until early 40’s, ~30 years earlier. MECFS evolved, which is neurological from stress, significant, and progressive. It is systemic, affecting multiple brain functions including cognitive,IBS and insomnia. Then Peripheral Neuropathy severely hit in feet, it too is systemic and progressive with high pain. I think these conditions are interrelated, neurologically. I’m functional but slow, getting more and more housebound.

I’m more or less tuned into the CFSME but not so much the related conditions. I’d like to see what we share in common, dealing with the symptoms et al. ✌️

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Hello @stress, Welcome to Connect. I think you are right in that a lot of the neurological conditions are tied together. I don't have ME/CFS but do have small fiber PN, polymalgia rheumatica, and am trying to figure out if I'm in the catagory of those with metabolic syndrome which I think is related to my neuropathy. Here's some information that I think speaks to neuropathy and ME/CFS.

Small Fiber Neuropathy (SFN) Fibromyalgia and ME/CFS Resource Page: https://www.healthrising.org/small-fiber-neuropathy-resource-page-fibromyalgia/

There are a few other discussions that you might find interesting.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Another connection I'm trying to understand which could possibly tie in with what you mentioned is the Metabolic Syndrome -- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

Have you tried doing any research using PubMed (https://pubmed.ncbi.nlm.nih.gov/) or Google Scholar (https://scholar.google.com/)?

REPLY
1 reply
Stretch | @stress | Nov 24, 2021
In reply to @johnbishop "Hello @stress, Welcome to Connect. I think you are right in that a lot of the..." + (show)
@johnbishop

Hello @stress, Welcome to Connect. I think you are right in that a lot of the neurological conditions are tied together. I don't have ME/CFS but do have small fiber PN, polymalgia rheumatica, and am trying to figure out if I'm in the catagory of those with metabolic syndrome which I think is related to my neuropathy. Here's some information that I think speaks to neuropathy and ME/CFS.

Small Fiber Neuropathy (SFN) Fibromyalgia and ME/CFS Resource Page: https://www.healthrising.org/small-fiber-neuropathy-resource-page-fibromyalgia/

There are a few other discussions that you might find interesting.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments: https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Another connection I'm trying to understand which could possibly tie in with what you mentioned is the Metabolic Syndrome -- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

Have you tried doing any research using PubMed (https://pubmed.ncbi.nlm.nih.gov/) or Google Scholar (https://scholar.google.com/)?

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Hi John. I appreciate the great reference material. I’ll spend some time on each.

I have been a reluctant researcher on MECFS since ~1990, and joined several of the forums in that arena. My home office is stacked high with research journals and articles from several sources you referenced=/ Cort Johnson has done a terrific job in setting up phoenixrising.me forums and Health Rising.org/forums, the 2 largest and most actively involved.

When you say you’re studying the metabolic connection I’m wondering if you’re referring specifically to the digestive system involvement? If so, I am also interested in learning more about it and IBS. My ‘gut’ feeling (pun intended) is that there is some strong correlation. My gut problems recently began and it feels like it’s being affected by nerves
(related to the SFN)? I recently scanned a book ‘The Second Brain’ that espoused the stomach as having its own nervous system, in addition to producing over 90% of the body’s serotonin. Dr. Mike Gershon went on to claim that it, the stomach can therefore function independently of the brain! Pretty interesting stuff, seeding more interest… .

I look forward to learning of your related ideas and those of others. Many thanks.

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