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
Rachel, Volunteer Mentor | @rwinney | Mar 26, 2020

@lorirenee1 Wow! Very well stated, great example too. I'm glad you weighed in.

You made me laugh about mustard! 😂🤣😂
My body goes dormant quite often like your feet and I don't move. Almost like a my limbs fall heavy and dead. It's in order to avoid more pain. I hate to compare to paralysis but, a very distant friend.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Mar 26, 2020
In reply to @notborntoburn "Very well put I share your pain Take care" + (show)
@notborntoburn

Very well put I share your pain
Take care

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@notborntoburn ⚘🌷⚘

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Mentor
Jim, Volunteer Mentor | @jimhd | Mar 26, 2020
In reply to @lorirenee1 "@rwinney Rachel, you are so right. My mom in law, God rest her soul, got livid..." + (show)
@lorirenee1

@rwinney Rachel, you are so right. My mom in law, God rest her soul, got livid when people used handicapped parking who were not in wheel chairs. If she could not see it, it didn't exist. She had MS, and used a walker. I used to try to reason with her that not all illness can be seen, but it was like talking to a wall. My mom had severe emphysema, and needed handicapped parking to get immediately into air conditioning, so that she could breathe! Some people lack empathy, intelligence,.....so many things. What amazes me is that there really are no drugs specifically for nerve damage. But my neurologist said, "nerves are very smart, and very hard to deal with!!!!" Who knows. I know that I am willing to try everything and anything not to hurt. Sometimes I try to keep my feet really still, because if I don't move them, some of the horrid senses that I feel, can't be felt. I do whatever helps. I would put mustard on them, if it helped. And if handicapped parking helps, people need to use them. I think we need to practice forgiveness from lack of empathy, idiocy, whatever....A forgiving heart can be peaceful.....Lori Renee

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@lorirenee1

I suppose that people see me getting out of my car that's in a handicap space and think I shouldn't park there. But I'm really glad I have a placard, especially when my feet are hurting. Any steps saved help me make it into a store and at least grab the things on my list. I used to enjoy browsing through stores, usually outshopping my wife, but I don't do that anymore - too painful. I'm a little less critical when I see healthy looking people using a handicap space. I remind myself that lots of disabilities aren't visible.

Jim

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Mar 26, 2020
In reply to @jimhd "@lorirenee1 I suppose that people see me getting out of my car that's in a handicap..." + (show)
@jimhd

@lorirenee1

I suppose that people see me getting out of my car that's in a handicap space and think I shouldn't park there. But I'm really glad I have a placard, especially when my feet are hurting. Any steps saved help me make it into a store and at least grab the things on my list. I used to enjoy browsing through stores, usually outshopping my wife, but I don't do that anymore - too painful. I'm a little less critical when I see healthy looking people using a handicap space. I remind myself that lots of disabilities aren't visible.

Jim

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Along the lines of not judging a book by its cover.

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summertime4 | @summertime4 | Mar 26, 2020

I don't mean to change up but I did not know where to ask. Does anyone have any tips on dealing with the numbness. My legs from the knees down are numb. So numb it is scary. I am a member of this group and have neuropathy. The numbness and heaviness are really doing a job on me mentally and physically.

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Mar 26, 2020
In reply to @summertime4 "I don't mean to change up but I did not know where to ask. Does anyone..." + (show)
@summertime4

I don't mean to change up but I did not know where to ask. Does anyone have any tips on dealing with the numbness. My legs from the knees down are numb. So numb it is scary. I am a member of this group and have neuropathy. The numbness and heaviness are really doing a job on me mentally and physically.

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Hello @summertime4. I only have intermittent numbness. The one thing I believe is good are myofascial release, massage, heat and stim to help generate blood flow and stimulate nerves. I believe @johnbishop lives daily with numbness in his feet and I'm sure he will offer what may work for him, if anything. How horrible to have to live with. Best wishes.
Rachel

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summertime4 | @summertime4 | Mar 27, 2020

@twinny Thank you for your reply. Yes, I do remember john having the numbness. I will go after him. Well you know what I mean. ha ha

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2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Mar 27, 2020
In reply to @summertime4 "@twinny Thank you for your reply. Yes, I do remember john having the numbness. I will..." + (show)
@summertime4

@twinny Thank you for your reply. Yes, I do remember john having the numbness. I will go after him. Well you know what I mean. ha ha

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👍🏼

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 27, 2020
In reply to @summertime4 "@twinny Thank you for your reply. Yes, I do remember john having the numbness. I will..." + (show)
@summertime4

@twinny Thank you for your reply. Yes, I do remember john having the numbness. I will go after him. Well you know what I mean. ha ha

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@summertime4, sorry I missed your first post and thanks to Rachel @rwinney for bringing me back into the discussion. I posted my initial story on my small fiber PN and numbness and links to the supplements and how I found them earlier here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I've been taking the supplements since Sept 2016 and noticed an improvement after 2 months when the numbness that was just below the knees seemed to go to just above the ankles. It stayed there until recently when I've started to notice some feeling in my feet and toes but they also still feel numb too...kind of hard to describe but it does feel better. Part of the improvement may be due to losing a little weight which I'm still working on, more exercise (not real intense stuff) and a new exercise device called the Sand Dune Stepper
(https://www.sanddunestepper.com/) that I use daily for 30 to 60 minutes in 15 minute increments throughout the day. It feels good on the feet and is basically walking in place but there are a lot of other exercises that you can do with it. I originally bought it because I thought it would help improve my balance and I do think it is helping. I also wear low cut white socks to bed every night more to protect the feet and let me know if I've stepped on something without knowing it and injured the foot. Before I put the socks on each night I put body lotion on my feet and legs to keep the skin moisturized which I think also helps if you are an old coot like I am 🙂

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