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.

fredamm | @fredamm | Jan 8, 2022

In reply to @jetsetter "My father developed trigeminal neuralgia about 3 years ago. He is 95 years old." + (show)

I had trigeminal neuralgia when I was 77 (now82) for two years on the right side of my face from my ear to the center of my jaw; Worst pain anyone can imagine. It drove me crazy. Had a novacaine injection from a pain doctor--the pain got way worse. Finally, I had a back molar removed, then I had another one removed (root canal tooth), THEN, slowly the real pain went away. Now I just have a slight sensation along the jawline. The only relief during that time were cannabis gummy bears my son had gotten in Colorado. I cut the bear into 10 pieces--10 mg at a time to help me sleep. Have compassion for your poor father.

fredamm | @fredamm | Jan 8, 2022

In reply to @jimhd "@auntieqd @mfobrien36 I have small fiber peripheral polyneuropathy, and it shows up mostly in my feet..." + (show)

@jimhd

@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

Jump to this post

I have the burning feet and the pins and needles, plus it feels like some
little things are crawling under my skin. Also, feels like I'm walking on gravel. I'm pretty active, but I cannot just stand still. I walk my dog 2-3 times a day. The walking feels good, but when I stop--yikes!.
I use capsaicin cream on part of my legs. What helps me most is cannabis pills at might--2mg THC, one mg CBD before I go to bed. It helps to keep my legs up in the recliner. I do wear compression socks. They help a great deal. Part of my neuropathy comes from compressed nerves in my back. I have had 2 steroid injections and they seem to help. The one in June lasted at least 4 months. Had one recently--wait and see.
IMPORTANT: I take Lyrica, pregabilin, 50 mg, 2 x. a day. I was without for 5 days and the burning and pain came back. I guess it works.
Neuropathy is something you have to try to keep in check and do things to make yourself comfortable. Hang in there.

jetsetter | @jetsetter | Jan 8, 2022

In reply to @fredamm "I had trigeminal neuralgia when I was 77 (now82) for two years on the right side..." + (show)

I'm so glad you finally got some relief! Thank you

John, Volunteer Mentor | @johnbishop | Jan 8, 2022

In reply to @kskill39 "My toes hurt with or without socks. It feels like every nail is ingrown" + (show)

Hi @kskill39, I noticed you haven't posted in awhile and was just wondering how you are doing with your feet and toes in particular. You mentioned they hurt with or without socks. I have a few hammer toes on each foot and sometimes the toenails seem to dig in and cause a little pain. I try to keep them trimmed but it can be difficult. Before I had to start wearing compression socks I found some really soft socks made from bamboo fiber that were really comfortable and seemed to make my feet feel much better.

Are you still having pain with your toes?

fredamm | @fredamm | Jan 9, 2022

In reply to @jetsetter "I'm so glad you finally got some relief! Thank you" + (show)

Thank you.

Jim, Volunteer Mentor | @jimhd | Jan 10, 2022

In reply to @kwfinnie "thankyou for an overview of your experiences. You gave me insight to alternatives for me. I..." + (show)

@kwfinnie @fredamm I wish a medication could be found to relieve the pain in my feet and ankles. Actually, instead of 7-9 pain pre IVig, I don't really notice the pain. It's there, and some things trigger it, like standing still, driving and sitting down, which seems kinda weird, but after sitting for a while, the pain decreases.

I do have balance problems, and sometimes I get dizzy. If I don't take action, I'd pass out. The balance tends to be when I stand up and turn. And I'd be in trouble if I had to do a sobriety test like you see on Cops. I have at this point mild autonomic neuropathy.

Some of the balance and dizziness could be related to my heart. I recently did a 7 day monitor, and it registered 1620 SVT episodes, the longest one lasting 26 minutes. It's a condition that causes tachycardia.

Time to have our nightly couples devotion, so I need to stop. The Lord bless you, as well.

Jim

hair127 | @hair127 | Jan 11, 2022

In reply to @venki "Take Nerve conduction test." + (show)

I have a Hair salon. A lady came in saying she had Prenthial Nerapthy. Her feet hurt so bad. She also could not sleep. I told her my sister takes an old anti-depressant to sleep! This lady asked her Doc for Elivil..like my sister takes. Now her FEET DON"T HURT! So another lady came in, the same problem! I told her! She got the old anti-depressant Elivil from her Doc! Now her feet don't hurt! Just saying!!!!!

fredamm | @fredamm | Jan 11, 2022

This Neuropathy is pretty interesting. In many ways it is elusive. I do take duloxetine (Cymbalta ) plus the pregabilin. Most of the time it relieves a good amount of the pain. Then, for some reason, can't pinpoint it, it will flare up. I try all the tricks mentioned in this sharing column. I even walked in the snow to cool off my feet. It felt good. As was said, standing still is the killer.
Good luck everyone. Stay calm and carry on. 🙂

pacer3702 | @pacer3702 | Jan 12, 2022

In reply to @hair127 "I have a Hair salon. A lady came in saying she had Prenthial Nerapthy. Her feet..." + (show)

The generic name for Elavil is amitriptyline. Neurologists commonly prescribe it for pain control in PN. It is what I take. I couldn't tolerate gabapentin or Lyrica. They affected my mood.