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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.

catro | @catro | Feb 28, 2020
In reply to @helennicola "@catro, there have been a few theories discussed, I like Rachel’s response the best. 😁My neurologist..." + (show)
@helennicola

@catro, there have been a few theories discussed, I like Rachel’s response the best. 😁My neurologist said it is because when we are at rest we are more aware of the pain; I am convinced it is a matter of poor circulation while in a prone position. Helen

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I don’t agree with your neurologist although one of my doctors said the same thing. I can be sitting in my chair massaging my bare feet and legs and concentrating on how they feel and noticing that they feel perfectly normal. 30 minutes later I’m in bed with my feet and legs burning. So what’s going on?

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1 reply
helennicola | @helennicola | 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, what do you take for your pain at night? I take gabapentin which puts me to sleep within 2 hrs. but before I fall asleep I find that moving my hands to a different position helps. That is also true for the foot cramps I often get.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 28, 2020
In reply to @helennicola "@catro, there have been a few theories discussed, I like Rachel’s response the best. 😁My neurologist..." + (show)
@helennicola

@catro, there have been a few theories discussed, I like Rachel’s response the best. 😁My neurologist said it is because when we are at rest we are more aware of the pain; I am convinced it is a matter of poor circulation while in a prone position. Helen

Jump to this post

@helencola, I used to think that way also when I was looking into getting a standing desk. I did a little research and found that a prone is actually best for circulation. The heart doesn't have to work as hard to pump the blood up and down (I think). Here's a reference:

Effects of Gravity on Venous Return - CV Physiology -- https://www.cvphysiology.com/Cardiac%20Function/CF017

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1 reply
Jane | @darlingtondoll | Feb 28, 2020
In reply to @catro "I don’t agree with your neurologist although one of my doctors said the same thing. I..." + (show)
@catro

I don’t agree with your neurologist although one of my doctors said the same thing. I can be sitting in my chair massaging my bare feet and legs and concentrating on how they feel and noticing that they feel perfectly normal. 30 minutes later I’m in bed with my feet and legs burning. So what’s going on?

Jump to this post

My legs can’t stand having anything touching them, so sheets and blankets are a problem. If I wake up with a lot of leg pain, I throw off the covers and I fall back asleep until I get cold. Then I get up, make some cocoa and take 600 mg of gabapentin and a 4 mg of tizanidine and I usually fall back asleep in 30 minutes. But I wake back up around 4AM with the legs on fire again. Then I just get up and start the day.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 28, 2020
In reply to @darlingtondoll "My legs can’t stand having anything touching them, so sheets and blankets are a problem. If..." + (show)
@darlingtondoll

My legs can’t stand having anything touching them, so sheets and blankets are a problem. If I wake up with a lot of leg pain, I throw off the covers and I fall back asleep until I get cold. Then I get up, make some cocoa and take 600 mg of gabapentin and a 4 mg of tizanidine and I usually fall back asleep in 30 minutes. But I wake back up around 4AM with the legs on fire again. Then I just get up and start the day.

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@darlingtondoll have you thought about a blanket lifter? I think @jimhd has mentioned them and that they help. Here are some product reviews - https://www.top5reviewed.com/blanket-support-lifts/

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Mentor
Rachel, Volunteer Mentor | @rwinney | Feb 28, 2020
In reply to @wilcy "Have spinal stenosis! Nothing work! Had stimulator installed in back 2 days ago! Working great! Ck..." + (show)
@wilcy

Have spinal stenosis! Nothing work! Had stimulator installed in back 2 days ago! Working great! Ck out,

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@wilcy Yayyy!! This is great news for you. 😁

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qball2019 | @qball2019 | 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?

Jump to this post

@catro
I have the same issue but only sometimes at night. I have it several times throughout the day and at times it's fairly constant. My doctor has said that she thinks it may be that my nervous system is overloaded with the worsening of the Tarlov cysts. It's also a symptom of arachnoiditis. I haven't been diagnosed yet but I sure check most of the boxes. There is very interesting reading if anyone wants to check it out at http://www.arachnoiditishope.com Arachnoiditis seems to go hand in hand with Tarlov cysts, injections, nerve blocks, epidurals, spinal cord injuries, trauma, etc. I wish you the best!

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helennicola | @helennicola | Feb 28, 2020
In reply to @johnbishop "@helencola, I used to think that way also when I was looking into getting a standing..." + (show)
@johnbishop

@helencola, I used to think that way also when I was looking into getting a standing desk. I did a little research and found that a prone is actually best for circulation. The heart doesn't have to work as hard to pump the blood up and down (I think). Here's a reference:

Effects of Gravity on Venous Return - CV Physiology -- https://www.cvphysiology.com/Cardiac%20Function/CF017

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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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