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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 18 hours ago | Replies (6026)

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@auntieqd

Thanks for the tip, I will try it! Sleeping through the night is one of my biggest problems. I can sleep about 3 hours before my feet & hands wake me up with being almost completely numb! Lidocaine cream helps sometimes & found a 5% Lidocaine gel which works slightly better.

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Replies to "Thanks for the tip, I will try it! Sleeping through the night is one of my..."

Welcome @auntieqd, I'm glad to see that you connected with @mfobrien36 and hopefully found something to help you sleep better through the night. The Foundation for Peripheral Neuropathy also has some tips/suggestions to help with sleep here - https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/

Do you mind sharing a little more about your neuropathy diagnosis and symptoms?

@auntieqd @mfobrien36 I have small fiber peripheral polyneuropathy, and it shows up mostly in my feet and ankles. It began in my toes and heels, but has gradually taken over both of my feet and has been making its way up my legs. So far, above my ankles, I just have pins and needles usually, up to my groin. I tried every medication my numerous doctors have thrown at me, with no pain relief except for morphine sulfate contin.

Capsaicin works for some people (not me - it just burns), but lidocaine cream 5% numbs my feet and ankles so I can go to sleep.

In 2017 I had a spinal cord stimulator implant, and it was wonderful! I'd forgotten how it felt not to be in pain. Unfortunately, after a year it started losing its effectiveness, though I still have it, and it probably helps a little. Last year I had a dorsal root ganglion stimulator trial, but it had no effect.

Four months ago I started IVig infusions, and the 4th round of infusion last Monday and Tuesday has brought me some good relief. The pain has been way down to 2 or 3! I still have the annoying pins and needles, but the burning pain is nearly gone. My neurologist said that I'll know it's working if the pain is reduced for 2 or 3 weeks, and then the 4th week will be back up to 7-9 pain level. I REALLY hope it continues to work.

I've heard that Blue Emu works like lidocaine cream for some people. Have you soaked your feet in cold water? It has numbed the pain for me for an hour or so. The other day I took off my slipper sandals and walked in the snow barefoot for a few minutes. It felt kinda good, actually. I remember doing it when I was a kid, living in upstate New York.

Have you tried doing a really light massage on your legs? I find different places to tickle/massage, and I feel a pleasant feeling in my feet and ankles. I use a telescoping back scratcher and just slowly slide it up and down, using just the weight of the scratcher, with no pressure. Kinda strange the things we find that either relieve the pain or distract us from it.

BTW, I switched from morphine to buprenorphine a few months ago, but it doesn't do the job that morphine did. It's an opioid, but behaves differently from morphine, and I guess it's supposed to be better for sfpn. I'm not convinced.

Cherries. Are maraschino cherries OK? I'd happily eat a bunch of those every day.

Gotta stop writing and get to sleep. I think my Bipap machine helps me sleep through most of the pain.

Jim