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.

highdesertdweller | @highdesertdweller | Feb 12 1:28am

In just the last few days I've taken such a turn for the worst. I can't sleep tonight as my feet are so hard like a rock and the pins and needles are horrific. They've been like that for years but the last few days they've gotten even worse. I'm numb now up to my knee and I'm having trouble walking. I have the muscle for sure but the connection from my brain to my feet is not making itself felt anymore. I thought about going to the emergency room but I'll just be there all night and they'll give me a referral to see a neurologist in a week, a month, who knows when and they have NEVER helped me. I guess they staved off this Hell for a few years with the Lyrica, et al. but now it's caught up with me and I'm 63 and at the end now. I don't think I'll be able to see a (useless) doctor and am thinking about going a few hours south to Mexico where at least I can see a doctor though what they can do for me there is not anything either. I need a cane now and am tempting fate by trying to walk and I can't sleep and it's hopeless and the physical and psych pain is huge. Is there ANYTHING THAT CAN BE DONE. . EVEN TO MITIGATE MY PAIN AND PHYSICAL DISCOMFORT????!!!!

bingo2a | @bingo2a | Feb 12 5:18am

In reply to @blowerk1216 "@bingo2a I am using R-form ALA, which is the recommended type" + (show)

@blowerk1216
Has it helped and what daily dose are you taking?
Thank you.

blowerk1216 | @blowerk1216 | Feb 12 7:27am

In reply to @bingo2a "@blowerk1216 Has it helped and what daily dose are you taking? Thank you." + (show)

@bingo2a 1200 mg per day and no sign of improvement yet but it’s early dsys

omrbl bob j | @omrbl | Feb 13 12:30pm

Hi! Just watching and listening by reading right now. Major problem right now is balance control. Muscle weakness I can deal with through home exercise and PT but exercises for balance control are sometimes exhilerating for a person who lives alone. Surprisingly I have little to no pain associated with this worrisome condition and I sincerely hope that continues.

njfox | @njfox | Feb 23 10:37am

I am Barbara in NJ. I have neuropathy secondary to radiculopathy due to spinal scoliosis, spondylolithisis and stenosis. I have had minor back surgery. and a spinal cord stimulator trial. I have and continue to take multiple supplements for discomfort. I am considering further spinal surgery because I am losing some function in right leg -but I am 82 and a bit reluctant to do surgery! any suggestions will be helpful. Thank you.

heisenberg34 | @heisenberg34 | Feb 23 11:17am

In reply to @njfox "I am Barbara in NJ. I have neuropathy secondary to radiculopathy due to spinal scoliosis, spondylolithisis..." + (show)

@njfox When you say that you are experiencing discomfort, what level of pain do you have, using the famous 1-10 pain scale? I don't know why they are telling you to get spinal surgery for just "discomfort". I would be very careful before proceeding. There are many here on this blog who had spinal surgery (myself included) and experienced no relief. Has the spinal cord stimulator helped at all? Let me know, please.

njfox | @njfox | Feb 23 12:09pm

I have had low back discomfort/pain of 5-6 at different times since 2000. For many years, with the help of chiropractic and massage and custom made insoles I had minor difficulty. Since 2018 pain/constant neuropathy has increased. I had minimally invasive back surgery in 2023 without any significant relief. I have had physical therapy intermittently to strengthen and correct alignment . When I sit the R lower leg and foot -especially the toes -- is on a level of 5-6 with nerve activity. My walk is being affected by the R foot not planting correctly so it is affecting my activity level - plus it is cold and snowy and I am not outside and walking as I have attempted to do at least 1 - 2 miles several times a week. I have an appointment with a neurosurgeon who helped my doctors mother who has had similar diagnosis--that is in March. THE PROBLEM is finding the right therapies --I also doing something similar to Tens Unit on R leg. I am doing the David Mind Alive Pro to learn to minimize the pain. Thank you for responding.

jeraldrondo430 | @jeraldrondo430 | Feb 24 8:56am

In reply to @njfox "I am Barbara in NJ. I have neuropathy secondary to radiculopathy due to spinal scoliosis, spondylolithisis..." + (show)

@njfox
I have spinal stenosis also. I have 2 back surgeries all with success and the last one I was 84 and am 86 now.
Find the best orthopedic you can. One done in Sarasota Fl the other at University of Washington.. both are great

njfox | @njfox | Feb 24 9:48am

In reply to @jeraldrondo430 "@njfox I have spinal stenosis also. I have 2 back surgeries all with success and the..." + (show)

@jeraldrondo430
What did they do specifically with the back surgeries? appreciate your feedback.

jeraldrondo430 | @jeraldrondo430 | Feb 24 7:15pm

In reply to @njfox "@jeraldrondo430 What did they do specifically with the back surgeries? appreciate your feedback." + (show)

@njfox
2 rods from shoulders to the bottom of my rectum
26 pins to hold my spine in place
Sounds scary but my recovery regarding off drugs but Tylenol was 6 weeks and physical therapy at home after 3 weeks for 2 months