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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.

rivermaya34 | @rivermaya34 | Jul 25, 2021

Turning Point - help??

So, I started having minor numbness in my feet 9 years ago, but never really bothered me except when it’s cold. Yesterday, my legs started feeling “off”, and now tonight my feet are burning and feels like 10,000 needles stuck inside them. Also, my legs are now on fire and numb up to my knees. I knew this could happen someday, but didn’t realize it’d be so sudden and ramped up! Is this normal for it to be acute versus gradual? Will it stay feeling like this or simmer down? How does anyone ever sleep or function like this without losing their sanity?? 🙁 ... any suggestions or thoughts?

REPLY
1 reply
Leonard | @jakedduck1 | Jul 26, 2021
In reply to @rivermaya34 "Turning Point - help?? So, I started having minor numbness in my feet 9 years ago,..." + (show)
@rivermaya34

Turning Point - help??

So, I started having minor numbness in my feet 9 years ago, but never really bothered me except when it’s cold. Yesterday, my legs started feeling “off”, and now tonight my feet are burning and feels like 10,000 needles stuck inside them. Also, my legs are now on fire and numb up to my knees. I knew this could happen someday, but didn’t realize it’d be so sudden and ramped up! Is this normal for it to be acute versus gradual? Will it stay feeling like this or simmer down? How does anyone ever sleep or function like this without losing their sanity?? 🙁 ... any suggestions or thoughts?

Jump to this post

@rivermaya34
I’ve had Neuropathy over 30 years and a number of the drugs used to treat it now weren’t yet available. Not long after Neurontin became available I started taking it. Even though I took the maximum dose of 3,600mg I got no relief from seizures or Neuropathy. I took various opioids including fentanyl which helped me the most. I don’t remember how quickly my Neuropathy progressed other than in the beginning it was very painful and about 10 years ago my feet became numb.
Take care,
Jake

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1 reply
jimmy 370 | @jimmy370 | Jul 26, 2021

Any New news on neuropathy? Burning feet!!!!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 26, 2021
In reply to @jimmy370 "Any New news on neuropathy? Burning feet!!!!" + (show)
@jimmy370

Any New news on neuropathy? Burning feet!!!!

Jump to this post

@jimmy370 - There are a couple of other discussions more focused on burning feet. You started the first one but I'm not sure if you have seen all of the responses in the discussion.

-- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
-- Burning Feet syndrome: https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

You also may want to read through the Member Neuropathy Journey Stories: What's Yours? discussion to learn what other members have shared helps them - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here's a member story in another discussion that you might find helpful - https://connect.mayoclinic.org/comment/611196/

What treatments or alternative therapies have you tried?

REPLY
rivermaya34 | @rivermaya34 | Jul 26, 2021
In reply to @jakedduck1 "@rivermaya34 I’ve had Neuropathy over 30 years and a number of the drugs used to treat..." + (show)
@jakedduck1

@rivermaya34
I’ve had Neuropathy over 30 years and a number of the drugs used to treat it now weren’t yet available. Not long after Neurontin became available I started taking it. Even though I took the maximum dose of 3,600mg I got no relief from seizures or Neuropathy. I took various opioids including fentanyl which helped me the most. I don’t remember how quickly my Neuropathy progressed other than in the beginning it was very painful and about 10 years ago my feet became numb.
Take care,
Jake

Jump to this post

@jakedduck1 Wow, that is a very long time...what a trooper you are!! I hope not to progress to Fentanyl, but Gaba barely takes the edge off right now. Still playing around with dosage right now. Thank you for the info, that was very helpful. I’m so sorry you’ve been in pain for SO long ... I wish you all the pain-free, joyous days in the world!
-Karen

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kolbe55 | @arlenereiss55 | Jul 27, 2021

what do you do for the numbness? Anything other than Gab & Fentanyl?

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1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 27, 2021
In reply to @bcool123 "Chris, maybe you can help me. I try to read posts daily but sometimes I miss..." + (show)
@bcool123

Chris, maybe you can help me. I try to read posts daily but sometimes I miss a day or two. At the bottom of some pages he gives an option to see more posts and list one through…. It allows me to see the last posts But is there someway to see ones from just the last couple of days other than going from one and up one by one. Would appreciate any help you could give me thank you

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Hi there, @bcool123. I think what you are requesting is something like your online bank account. You want to specify and receive only the dates or days that include the information you are seeking. Is that correct? I am going to ask @johnbishop if that is conceptually possible. John?????

Chris

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 27, 2021
In reply to @bcool123 "Chris, maybe you can help me. I try to read posts daily but sometimes I miss..." + (show)
@bcool123

Chris, maybe you can help me. I try to read posts daily but sometimes I miss a day or two. At the bottom of some pages he gives an option to see more posts and list one through…. It allows me to see the last posts But is there someway to see ones from just the last couple of days other than going from one and up one by one. Would appreciate any help you could give me thank you

Jump to this post

@bcool123 and @artscaping, The posts in a discussion are in chronological order but when you reply to a post it will go at the bottom of the order but will include the post you were replying to above it - you just have to click +(show) to show it and then Jump to this post link if you want to go to that post in the discussion.

Here are two tips you might find helpful...
-- Replies and @mentions: How do I know who is replying to whom?: https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
-- [TIP] Customize the Order You View Posts - See New Posts First: https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/

REPLY
2 replies
cblythe | @cblythe | Jul 27, 2021
In reply to @johnbishop "@bcool123 and @artscaping, The posts in a discussion are in chronological order but when you reply..." + (show)
@johnbishop

@bcool123 and @artscaping, The posts in a discussion are in chronological order but when you reply to a post it will go at the bottom of the order but will include the post you were replying to above it - you just have to click +(show) to show it and then Jump to this post link if you want to go to that post in the discussion.

Here are two tips you might find helpful...
-- Replies and @mentions: How do I know who is replying to whom?: https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/
-- [TIP] Customize the Order You View Posts - See New Posts First: https://connect.mayoclinic.org/discussion/new-customize-the-order-you-view-posts-see-new-posts-first/

Jump to this post

Thank you for the help. I’ve been living with neuropathy for 9 years no post massive stroke. I was making some progress with chiropractor who used red light therapy, oxygen infusions,and a rebuilder but then COVID.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 27, 2021
In reply to @cblythe "Thank you for the help. I’ve been living with neuropathy for 9 years no post massive..." + (show)
@cblythe

Thank you for the help. I’ve been living with neuropathy for 9 years no post massive stroke. I was making some progress with chiropractor who used red light therapy, oxygen infusions,and a rebuilder but then COVID.

Jump to this post

Hello @cblythe, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There are a couple of other discussions you might find helpful to learn what other members have shared.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- THE REBUILDER for peripheral neuropathy: https://connect.mayoclinic.org/discussion/the-rebuilder-for-peripheral-neuropathy/

Are you able to share a little more about your diagnosis and symptoms?

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