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.

Mentor
John, Volunteer Mentor | @johnbishop | Nov 24, 2021
In reply to @stress "Hi John. I appreciate the great reference material. I’ll spend some time on each. I have..." + (show)
@stress

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.

Jump to this post

Thanks @stress, I will try to remember to share updates if I learn anything new. It's a bit over my head now and a lot of reading and trying to understand how it could or might be applicable to me.

REPLY
retired123 | @retired123 | Nov 25, 2021
In reply to @stress "Hi John. I appreciate the great reference material. I’ll spend some time on each. I have..." + (show)
@stress

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.

Jump to this post

My neuropathy symptoms surfaced 6 months after intestinal surgery. I have always thought that was the cause but all of the doctors I've seen just ignore the connection. I also read "The Second Brain" plus other related books prior to the surgery.

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Stretch | @stress | Nov 25, 2021

It seems my neuropathy began in my feet 15+years ago, icy cold with numbness, then progressed to severe pain ~3 years earlier. Now it’s going up my legs and maybe systemically? I can feel feel it’s ‘tightness’ it my gut and maybe all over.🤷‍♂️and I t’s pretty scary. I’m seeing a gastroenterologist for IBS tests, now. I wonder about yours, in gut or all over and what you feel? Are you distressed…and or how you might be controlling it?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Nov 25, 2021
In reply to @stress "It seems my neuropathy began in my feet 15+years ago, icy cold with numbness, then progressed..." + (show)
@stress

It seems my neuropathy began in my feet 15+years ago, icy cold with numbness, then progressed to severe pain ~3 years earlier. Now it’s going up my legs and maybe systemically? I can feel feel it’s ‘tightness’ it my gut and maybe all over.🤷‍♂️and I t’s pretty scary. I’m seeing a gastroenterologist for IBS tests, now. I wonder about yours, in gut or all over and what you feel? Are you distressed…and or how you might be controlling it?

Jump to this post

Hi @stress, I was wondering if your post was directed to me or if for @retired123?

Sometimes it's hard to know who your post is for unless you click the REPLY button below a post which lets the person know that you are replying to their post on Connect. Another way to direct your post to a member is to use their member name like I did here with you. When you click the POST COMMENT button at the bottom of the page, it normally means you are asking a question of any member or providing information for everyone.

REPLY
1 reply
Stretch | @stress | Nov 25, 2021
In reply to @johnbishop "Hi @stress, I was wondering if your post was directed to me or if for @retired123?..." + (show)
@johnbishop

Hi @stress, I was wondering if your post was directed to me or if for @retired123?

Sometimes it's hard to know who your post is for unless you click the REPLY button below a post which lets the person know that you are replying to their post on Connect. Another way to direct your post to a member is to use their member name like I did here with you. When you click the POST COMMENT button at the bottom of the page, it normally means you are asking a question of any member or providing information for everyone.

Jump to this post

@johnbishop Oops, apparently I hit the wrong button when posting, sorry. Actually, I was responding to @retired123, but I’m always open to learning from anyone.

REPLY
retired123 | @retired123 | Nov 25, 2021
In reply to @stress "It seems my neuropathy began in my feet 15+years ago, icy cold with numbness, then progressed..." + (show)
@stress

It seems my neuropathy began in my feet 15+years ago, icy cold with numbness, then progressed to severe pain ~3 years earlier. Now it’s going up my legs and maybe systemically? I can feel feel it’s ‘tightness’ it my gut and maybe all over.🤷‍♂️and I t’s pretty scary. I’m seeing a gastroenterologist for IBS tests, now. I wonder about yours, in gut or all over and what you feel? Are you distressed…and or how you might be controlling it?

Jump to this post

Mine started and is in my feet and ankles making them so tight walking is assisted/difficult and I no longer drive. It started with tingling in the feet progressing to where it is now. My lower legs tingle and have the sensation of being cold but if I touch the skin it is not cold. My surgery was for a part of my intestines that was trapped in scar tissue and being strangled. I found it interesting you mentioned IBS. I had that for about 20 years. After the surgery it is gone even though the surgery was not related to it. It makes me wonder if IBS primed my body for this waiting for the opportunity to activate. Since small fiber neuropathy can affect the smooth muscles I find some functions different from before. No pain. I'm taking supplements, exercising and trying whatever I can that might help me get back to walking and driving. All info and suggestions are welcome as I continue to educate myself on this and will hopefully find the cause to treat it. I'm taking Pregabalin for the symptoms but that is only partially helping. I'm dealing with the rest as I don't want to take a higher dosage or more Rx. I'm taking chocolate and potato chips to treat the soul. 🙂 I'm not diabetic or overweight. Just aging and that might be the cause! In any case, it stinks. 6 weeks before this started I was walking all over a cruise ship and Alaska. That was 2 1/2 years ago. I fear there is no short answer for any of us.

REPLY
1 reply
jamiebw | @jamiebw | Nov 26, 2021

Hello, I’m new to this group. I am suffering and hope to learn how to deal with my conditions and make connections. Thank you and Happy Holidays to all.

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Nov 26, 2021
In reply to @jamiebw "Hello, I’m new to this group. I am suffering and hope to learn how to deal..." + (show)
@jamiebw

Hello, I’m new to this group. I am suffering and hope to learn how to deal with my conditions and make connections. Thank you and Happy Holidays to all.

Jump to this post

Good afternoon @jamiebw and welcome to Connect. I am so sorry to read that you are suffering. I think we all have experienced suffering. On the Connect community, our mission is to improve the quality of life for every member.
For me to help support your situation and condition, I will need to know more about the medical issues that are causing you pain, unhappiness, and disappointment. Have you been diagnosed with a form of neuropathy? Are you receiving treatments of any kind?

What is your greatest concern?

May you be safe, protected and free of inner and outer harm.
Chris

REPLY
julkun | @julkun | Nov 29, 2021

I like this site because it is a good informational start. That being said, I am very disappointed that I can't talk one-on-one with somebody who has similar pain. People come here for unbearable pain solutions. We know it's not a dating site. Sometimes I can help a person if I could just ask them a few questions and sometimes I'm sure that a person can help me. Please, keep this site if you want to but give us options that can give a quicker solution, and that is the one-on-one contact. If you really want to help you'll consider a second site.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 29, 2021
In reply to @julkun "I like this site because it is a good informational start. That being said, I am..." + (show)
@julkun

I like this site because it is a good informational start. That being said, I am very disappointed that I can't talk one-on-one with somebody who has similar pain. People come here for unbearable pain solutions. We know it's not a dating site. Sometimes I can help a person if I could just ask them a few questions and sometimes I'm sure that a person can help me. Please, keep this site if you want to but give us options that can give a quicker solution, and that is the one-on-one contact. If you really want to help you'll consider a second site.

Jump to this post

@julkun, You can use the private message function of Connect to exchange contact information with another member or converse with each other but sometimes it helps everyone if you share on Connect.
https://connect.mayoclinic.org/get-started-on-connect/

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