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.

Hank | @jesfactsmon | Dec 6, 2020
In reply to @sunnyflower "Hi Toni, glad you've found a way to help yourself, especially your painful neuropathy Sxs! Thx..." + (show)
@sunnyflower

Hi Toni, glad you've found a way to help yourself, especially your painful neuropathy Sxs! Thx for sharing.

My persuasion regarding food is that we need to eat a good balanced diet. This was learned the hard way and not until after I harmed my body.

I saw a guy on Dr. Oz who went around the world researching who were the most heart-healthy and fit. I forget the name of the country but believe it is a South American country. Three take aways. 1. They move 90% of the time they are awake. 2. They sleep 9 hours per night. Now sit down! 3. They eat a VERY high carb diet; plantains at every meal whether steamed, fried, boiled, etc.. I'm thinking they also have a lot of fiber. Funny how this came out sometime around when the Keto diet did.

I lost 200# on a very low calorie diet which is the worst thing ever for osteoporosis which I already had severe from daily steroids (3 pelvic and 1 rib Fxs). Unintentionally, and without realizing it, I had no dairy or bread for years except for the occasional binge. No dairy is another "worst thing" for osteoporosis. Guys, I only learned this recently from the bones, muscles and joints Connect blog!! My most recent bone density scan showed I'm significantly worse. It's extremely disconcerting to say the least!

But thanks to the GREAT, caring people here, I have learned the error of my ways and how to make changes to improve my health and /or at least prevent further problems.

Unintentionally, I lost this weight eating low calories. As it turns out, with the choices I made, it turned out that I was not having much fat. More carbs. Now my carbs are 2 or 3 apples every night and blueberries in my yogurt daily.

I wish all of you the best for yourselves and whatever works the best for you it. It's so individualized.

Warmest wishes, Sunnyflower. 😊🌹

"Oh magnify the Lord with me and let us exalt His name together" Psalm 34 :3 🙏

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@sunnyflower
I heard you mention this before Sunny. 200 lbs. is just a crazy amount of weight to lose. That is on the scale of The Biggest Loser (ever see that show?). I was overweight as a little kid and lived with the stigma of being called fatso during grade school and junior high. When I hit 14 years old I grew 8 inches in less than a year and after that I was never as fat in proportion to my height ever again. But that aversion to being fat never left me, believe me! I have tried to maintain a healthy lifestyle most of my life.

If you do not mind me asking, I am curious what your weight was after you lost the 200 lbs.? You must have felt better with the weight gone, but sad you did not know the impact on your bone density and osteoporosis. It is so unfortunate that your latest scan shows your bone density has worsened. I am very sorry for you about this. Best, Hank

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steve123 | @steve123 | Dec 7, 2020

Hello, thank you for accepting me into the group. I have been looking for a chronic pain group for a while now. I had a brain stem stroke that has left me with weakness and severe by lateral neuropathy, I am looking for coping mechanisms and treatments and look forward to reading about peoples ways to get by with similar issues.

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2 replies
irajoyce | @irajoyce | Dec 7, 2020

Hi I am Joyce. I suffer from a neurological itch that effects my entire back and eyebrows. Wakes me up and keeps me awake. Scratching sometimes helps for a short period. Losing confidence that I will find help. Thanks for being there

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3 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 7, 2020
In reply to @steve123 "Hello, thank you for accepting me into the group. I have been looking for a chronic..." + (show)
@steve123

Hello, thank you for accepting me into the group. I have been looking for a chronic pain group for a while now. I had a brain stem stroke that has left me with weakness and severe by lateral neuropathy, I am looking for coping mechanisms and treatments and look forward to reading about peoples ways to get by with similar issues.

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Hi @steve123, Welcome to Mayo Clinic Connect. There are a couple of other discussions that you might find helpful.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
- Alternatives for pain management: https://connect.mayoclinic.org/discussion/alternatives-for-pain-management/

@artscaping @avmcbellar @jesfactsmon and other members may also have some suggestions for you.

Have you found any coping mechanisms or treatments that help some?

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 7, 2020
In reply to @irajoyce "Hi I am Joyce. I suffer from a neurological itch that effects my entire back and..." + (show)
@irajoyce

Hi I am Joyce. I suffer from a neurological itch that effects my entire back and eyebrows. Wakes me up and keeps me awake. Scratching sometimes helps for a short period. Losing confidence that I will find help. Thanks for being there

Jump to this post

Hi @irajoyce, Welcome to Mayo Clinic Connect. I always have an itch that effects my back but I'm not sure mine is neurological. I think @artscaping may have some thoughts for you as she has posted about neurological itching. There is also a discussion that Chris started that you may be interested in viewing here:

- What do you do for Neuropathy itch?: https://connect.mayoclinic.org/discussion/what-do-you-do-for-neuropathy-itch/

I'm sure it must be awful if it wakes you up and keeps you awake. Have you discussed the itch with a doctor or skin specialist?

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Barry Sheales | @user_che214927 | Dec 7, 2020
In reply to @irajoyce "Hi I am Joyce. I suffer from a neurological itch that effects my entire back and..." + (show)
@irajoyce

Hi I am Joyce. I suffer from a neurological itch that effects my entire back and eyebrows. Wakes me up and keeps me awake. Scratching sometimes helps for a short period. Losing confidence that I will find help. Thanks for being there

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Hi Joyce, I also had the problem, but know permanently gone. Read through my past posts and you will find the details. Good luck, and never give up!
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avmcbellar | @avmcbellar | Dec 7, 2020
In reply to @johnbishop "Hi @steve123, Welcome to Mayo Clinic Connect. There are a couple of other discussions that you..." + (show)
@johnbishop

Hi @steve123, Welcome to Mayo Clinic Connect. There are a couple of other discussions that you might find helpful.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
- Alternatives for pain management: https://connect.mayoclinic.org/discussion/alternatives-for-pain-management/

@artscaping @avmcbellar @jesfactsmon and other members may also have some suggestions for you.

Have you found any coping mechanisms or treatments that help some?

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Hi @steve123 I would also like to welcome you to the Mayo Clinic group chat. Here you will find answers or recommendations through the experiences of other members. I am sorry to hear of your bilateral neuropathy. I had a brain aneurysm (AVM) in my cerebellum. I had several surgical repairs but the last one left me with neuropathy unilaterally from head to toe. I have been learning what works for me by trial and error. I will be happy to answer any questions you may have. I do not take any medications for my condition. Best wishes. Toni

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1 reply
momwith2dogs | @momwith2dogs | Dec 7, 2020
In reply to @avmcbellar "Hi @steve123 I would also like to welcome you to the Mayo Clinic group chat. Here..." + (show)
@avmcbellar

Hi @steve123 I would also like to welcome you to the Mayo Clinic group chat. Here you will find answers or recommendations through the experiences of other members. I am sorry to hear of your bilateral neuropathy. I had a brain aneurysm (AVM) in my cerebellum. I had several surgical repairs but the last one left me with neuropathy unilaterally from head to toe. I have been learning what works for me by trial and error. I will be happy to answer any questions you may have. I do not take any medications for my condition. Best wishes. Toni

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How do you not take any medications? I'm not saying mine help but it definitely makes me feel better (or sleep).

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2 replies
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 7, 2020
In reply to @irajoyce "Hi I am Joyce. I suffer from a neurological itch that effects my entire back and..." + (show)
@irajoyce

Hi I am Joyce. I suffer from a neurological itch that effects my entire back and eyebrows. Wakes me up and keeps me awake. Scratching sometimes helps for a short period. Losing confidence that I will find help. Thanks for being there

Jump to this post

Good evening "@irajoyce". Welcome to Connect. You mention something I have never encountered: eyebrows that itch. You state that you are losing confidence that you will be able to find help. Would you be able to tell me what you have tried? The neurological itch falls into the same category as neuropathy itself which has no cure. Most folks find that hard to accept. How could there not be a magic pill, a new machine, a better exercise that would end your search for tolerance and freedom from pain. There just isn't a cure right now.

The Itch, as I call it can has brought me to my knees......crying in agony. I have been to a dermatologist and she has been able to try a few things that help a little with the irritation of itching or the intolerable pain that can accompany it.

Will you take a few moments to send me a little more about your itch suffering and your attempts to ameliorate it? Do you stick to a regimen? I can then review what else might be worth looking at and introduce you to some other folks who are coping as well as they can.

May you be safe and protected.
Chris

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Dec 7, 2020
In reply to @johnbishop "Hi @steve123, Welcome to Mayo Clinic Connect. There are a couple of other discussions that you..." + (show)
@johnbishop

Hi @steve123, Welcome to Mayo Clinic Connect. There are a couple of other discussions that you might find helpful.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
- Alternatives for pain management: https://connect.mayoclinic.org/discussion/alternatives-for-pain-management/

@artscaping @avmcbellar @jesfactsmon and other members may also have some suggestions for you.

Have you found any coping mechanisms or treatments that help some?

Jump to this post

Good evening @steve123. May I add my genuine welcome to Connect. As @johnbishoop may have mentioned, our group of mentors has no official medical training or certification. We can neither diagnose nor prescribe. What we can do is assist you with your search by introducing you to other folks who have been there.

John has given you some links to current members' journeys. As soon as I get just a little more information about where you have been and what has worked for you. Do you have tingling and then needling sensations in your arms and fingers? How about your legs and feet? When did the neuropathy begin?

How do you feel when you wake up in the morning? What is a typical day for you......medications, exercise, activities? What would you like to be doing that you can't do because of neuropathy? Thanks.......

May you be free of suffering and the causes of suffering.
Chris

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