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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.

margottaylor | @margottaylor | Feb 17, 2020

Just weighing in after a couple of months away from the Connect....I agree that Legs up the Wall is a wonderful exercise for calming the mind and re energizing the body through recirculating blood. However, because it is an inversion posture, it is not good to do if you have sinus infections or brain or eye bleeding. If anyone wants a short tutorial about getting into and out of Legs up the Wall let me know or just pull it up on U Tube.
Also I really relate to the sudden cervical condition mentioned earlier by wgatap21 with necking cracking and (for me) arthritis in C 6/7, which has caused tremendous pain. I'm actually having a cortisone shot in my neck this Friday for pain relief as I found injections in my lumbar spine to bring significant relief. ha ha John about the snap, crackle and pop... which I too understand is more annoying than it is any medical concern.

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wgatap21 | @wgatap21 | Feb 17, 2020

Thx...avoiding the shot! Hoping for a better solution! Good luck and feel better

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1 reply
qball2019 | @qball2019 | Feb 17, 2020
In reply to @jimhd "@catro I'm sorry that I didn't see your message sooner. Have things improved over the past..." + (show)
@jimhd

@catro
I'm sorry that I didn't see your message sooner. Have things improved over the past couple of months?

I have similar symptoms, Catro. Similar in that as soon as I lie down or lean back in the recliner with my feet on an ottoman, they start in on burning pain. My daytime pain level is very unpredictable. My lowest pain is at 2, but it will go up to 8 fairly quickly. My feet and ankles hurt when I'm standing still, when I'm driving, and when I'm walking.

The pain is sometimes lessened by wearing loose socks. Other times I have to be barefoot because the socks (and anything else) cause pain by contact.

In bed, I have a pillow to keep between my legs so they don't touch each other, and another pillow under my feet. I have a blanket lifter to keep the bedding from touching my feet. I sleep on my side usually, though I have to lie on my back and prop up my head so I don't feel suffocated and have a panic attack. Sometimes I can rest my feet on the feather pillow, but sometimes I have to arrange my feet so only the heels are on the pillow and the rest of my feet hang off it. If that doesn't work I dangle them off the edge of the bed. Wherever they are, I can't let them touch each other. Wherever they make contact, there will be pain.

I use lidocaine cream on the burning areas, to numb the pain long enough to get to sleep, or sitting in my recliner, or driving. It helps, but it's very much temporary.

Are there certain things that start your pain? Can you find a position of comfort, even if it's just for a short time? Can you tolerate shoes? Have you found a certain shoe you can wear?

Each of us in these discussions about neuropathy are always on the lookout for new things to try - things that have helped others may or may not work for you or me.

I have sleep apnea and use a Bipap machine. It improves my sleep health enough that I don't wake up every night because of pain. Sleep's an important contributor to overall health. Before I was diagnosed with sleep apnea I snored a lot and stopped breathing, so I was chronically tired from sleep deprivation. What a change a CPAP machine made in my life. Sleep is good.

What things have helped you? If you could share those things with us, it could help a lot of people. I suppose you've read some of the things people have posted here. I hope that we can offer you some support and ideas.

Jim

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I find relief by sleeping with my feet up. I'm talking like on a 90 degree angle.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 17, 2020
In reply to @johnbishop "@wgatap21, a funny thing just happened as I was reading your post. I started doing the..." + (show)
@johnbishop

@wgatap21, a funny thing just happened as I was reading your post. I started doing the exercises that my friend taught me at the AARP safe driving class and snap, crackle, pop - I felt my neck pop at the base of my skull...yikes!

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I hope it was just a sound and not pain, @johnbishop!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 17, 2020
In reply to @hopeful33250 "I hope it was just a sound and not pain, @johnbishop!" + (show)
@hopeful33250

I hope it was just a sound and not pain, @johnbishop!

Jump to this post

No pain, just a funny pop sound

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 17, 2020
In reply to @qball2019 "I find relief by sleeping with my feet up. I'm talking like on a 90 degree..." + (show)
@qball2019

I find relief by sleeping with my feet up. I'm talking like on a 90 degree angle.

Jump to this post

@qball2019
How can you achieve that angle? Do you have an adjustable bed?

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1 reply
sandy552 | @sandy552 | Feb 17, 2020

I know nothing about relieving the pain for this at all. This is why I am reaching out.

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2 replies
wilcy | @wilcy | Feb 17, 2020
In reply to @hopeful33250 "@qball2019 How can you achieve that angle? Do you have an adjustable bed?" + (show)
@hopeful33250

@qball2019
How can you achieve that angle? Do you have an adjustable bed?

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How would l get off floor

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 17, 2020
In reply to @sandy552 "I know nothing about relieving the pain for this at all. This is why I am..." + (show)
@sandy552

I know nothing about relieving the pain for this at all. This is why I am reaching out.

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Hello @sandy552, Welcome to Connect. Are you able to share a little more about your neuropathy diagnosis and what treatments you have tried?

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2 replies
margaretob | @margaretob | Feb 18, 2020

I am margaretob and did join the group...M.

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