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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 | Feb 28, 2020
In reply to @helennicola "thanks John for that (I think!) Hard to decipher in my opinion! So why do you..." + (show)
@helennicola

thanks John for that (I think!) Hard to decipher in my opinion! So why do you think we feel our pain more at night in bed? Any thoughts? Helen

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@helennicola I think the link provided by @steeldove sheds some light on your question about feeling pain more at night. Here's the link mentioned in the earlier post - https://www.healthline.com/health-news/this-is-the-worst-time-of-day-for-pain-sensitivity

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1 reply
grammlyn | @grammlyn | Feb 28, 2020

Hi I suffer like most of us on here with Peripheral neuropathy. I Am just starting on Gabapentin. and if that doesn't work Dr. say Lyrica?? Don't know what else to say. Hope we all find a miracle to help us with this pain.

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1 reply
Mentor
Jim, Volunteer Mentor | @jimhd | Feb 28, 2020
In reply to @grammlyn "Hi I suffer like most of us on here with Peripheral neuropathy. I Am just starting..." + (show)
@grammlyn

Hi I suffer like most of us on here with Peripheral neuropathy. I Am just starting on Gabapentin. and if that doesn't work Dr. say Lyrica?? Don't know what else to say. Hope we all find a miracle to help us with this pain.

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@grammlyn Lyrica helps many people. I started taking it a couple of years ago, and it was really working for me. Unfortunately, I had a serious reaction to it and spent 3 days in the hospital. I was really disappointed that I couldn't take the only medication that relieved my neuropathy pain. I hope that you will find the one that works for you.

Jim

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2 replies
Mentor
Jim, Volunteer Mentor | @jimhd | Feb 28, 2020
In reply to @catro "I have a form of PN that causes pain in my feet and lower legs and..." + (show)
@catro

I have a form of PN that causes pain in my feet and lower legs and recently in my hands. But I can be pain free all day, go to sleep and three hours later wake up in pain. Has anyone given you an explanation for what happens after you go to sleep that causes the pain to come on?

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@catro I have the same problem. The pain level during the day seems to have no connection to my pain in the prone position. Within a few seconds after lying down my feet start hurting. Same thing in my recliner. I'm going to show my pain specialist the article @steeldove posted and see if it's something I should try.

Jim

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wilcy | @wilcy | Feb 28, 2020
In reply to @jimhd "@grammlyn Lyrica helps many people. I started taking it a couple of years ago, and it..." + (show)
@jimhd

@grammlyn Lyrica helps many people. I started taking it a couple of years ago, and it was really working for me. Unfortunately, I had a serious reaction to it and spent 3 days in the hospital. I was really disappointed that I couldn't take the only medication that relieved my neuropathy pain. I hope that you will find the one that works for you.

Jim

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A lot of us are like you! Drug s, shots, ! You have to do some type of exercise if your neuropathy is from spinal stenosis! Gabapentin, lyrica and back shots didn’t help me! Maybe they will help you! Good luck!

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geegie | @geegie | Feb 28, 2020
In reply to @jimhd "@grammlyn Lyrica helps many people. I started taking it a couple of years ago, and it..." + (show)
@jimhd

@grammlyn Lyrica helps many people. I started taking it a couple of years ago, and it was really working for me. Unfortunately, I had a serious reaction to it and spent 3 days in the hospital. I was really disappointed that I couldn't take the only medication that relieved my neuropathy pain. I hope that you will find the one that works for you.

Jim

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Hi John,. You do just a wonderful job and I know all of us are grateful and very appreciative. I use a very inexpensive tens machine and it does wonders.🙂 Perhaps it can help others as well. Rose

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helennicola | @helennicola | Feb 28, 2020
In reply to @johnbishop "@helennicola I think the link provided by @steeldove sheds some light on your question about feeling..." + (show)
@johnbishop

@helennicola I think the link provided by @steeldove sheds some light on your question about feeling pain more at night. Here's the link mentioned in the earlier post - https://www.healthline.com/health-news/this-is-the-worst-time-of-day-for-pain-sensitivity

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Thanks John, I found it very helpful. Helen

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2020

The Foundation for Peripheral Neuropathy kicked off a new series of patient education webinars that I think might be interesting for those of us with peripheral neuropathy.

Webinar: Living Well with PN: Session 1: Managing the Symptoms of PN with Dr. Shanna Patterson
-- https://www.foundationforpn.org/living-well/fpn-media-center/webinar-managing-symptoms-of-pn/

They also have some more on their latest news page here: https://www.foundationforpn.org/news/

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Mar 10, 2020
In reply to @johnbishop "The Foundation for Peripheral Neuropathy kicked off a new series of patient education webinars that I..." + (show)
@johnbishop

The Foundation for Peripheral Neuropathy kicked off a new series of patient education webinars that I think might be interesting for those of us with peripheral neuropathy.

Webinar: Living Well with PN: Session 1: Managing the Symptoms of PN with Dr. Shanna Patterson
-- https://www.foundationforpn.org/living-well/fpn-media-center/webinar-managing-symptoms-of-pn/

They also have some more on their latest news page here: https://www.foundationforpn.org/news/

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@johnbishop Thank you for sharing John!

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