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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@catro

My name is Charlie. I go by Catro. I am almost 82 and have had PN more than 10 years, but recently it has gotten worse having moved from my feet up my legs and into my hands and arms. The mystery is why I can feel fine during the time I am awake but about 2 hours after I go to sleep I wake up with my feet, legs and hands burning. This sleep wake cycle goes on until I finally get up and move around. It gradually subsides and I have a good day with little or no pain. Then I go to bed and it starts all over again. Does anyone experience this? Does anyone know what is going on in my body while I am asleep that is doing this to me. I’ have been off of sugar, alcohol, and anything high glycemic for several months.

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Replies to "My name is Charlie. I go by Catro. I am almost 82 and have had PN..."

Hello @catro, Welcome to Connect. I'm 76 and have had PN for 20+ years. I haven't experienced the burning when sleeping but have been woken up by the sharp pins and needles and tingling in the arms caused by laying on my arm/hand while sleeping on my side which I think pinches a nerve. Mayo Clinic lists some causes for burning feet here: https://www.mayoclinic.org/symptoms/burning-feet/basics/causes/sym-20050809.

Just curious if you have asked your doctor why you can feel OK during the day but wake up at night with the symptoms you describe?

Sir: My age and symptoms are similar, although only just roughly 2.5 years since beginning. As nerve damage is not easily repairable I've done some thinking about taking the brain, which rationalizes the pain experienced, OUT of the process. That has led me to psychotherapy (or CBT, cognitive behavioral therapy) and I have discovered an article which has helped me a lot. There is not an internet hyperlink to the article so I am inserting a couple of the article identifier numbers as follows: PMCID: PMC3000182
PMID: 21152145. I suggest you Google one, or other number, or both.
I hope you can find this article this way, If not, I will try to cut and paste it to you via some other means

@catro

I usually have pain in my feet which a spinal cord stimulator implant and a few medications keep the pain down to a tolerable level, but as soon as I lie down the pain instantly jumps to 6-8. I don't know why it happens. The same thing is true when I put my feet up in my recliner. But it hurts when I sit up with my feet on the floor, too.

I had 6 sessions with a pain therapist and I use a couple of things she told me. But otherwise it was a waste of time, at least it was for me.

I have this question on my list of things to ask my doctors about.

Jim

@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