Living with Neuropathy - Welcome to the group

Falling and pain have been big issues for me as well as incontinence.

Like you I have stenosis and degeneration issues in my back, thoracic and lumbar. I started falling in early December and like you I just fall down, but I cannot get back up and have absolutely no strength in my legs once I fall. I have fallen enough times that although I use a walker in the house, if I go out I am now in a wheelchair.
Falling down is just bizarre because you have little warning. I have cut my hand and needed stitches but most often I just get bruised up. Once I fall, I often wonder how I got down to the floor because one minute I’m standing and the next on the floor. I struggle with pain as well and use THC gummies to sleep. When I read your post I thought OMG this person is going through the same issue. Thank you for sharing, made me feel not so alone.

Hi, I wanted to say I’m so frustrated because of the falling! I fell outside in my backyard (at least it was on the grass), and of course I couldn’t get up, so I crawled to the patio and forcefully pulled myself up using a big pot filled with dirt! I was scratched up, and really tired from dragging myself and pulling myself. That’s the thing, after I fall, I can’t get up. I’m a very active 72-year old female, and I love working in the yard. I went back outside last night and used a broom for a cane and pulled weeds, but I can’t get in the back of the flowerbed or I’ll fall - I’ve fallen there, too! I guess I’ll have to settle for flowers in pots in my patio. I’m trying to get all perennials in my flower bed so I don’t have to mess with them!

The falling really frustrates me as well. I have had some very public falls when this all started, one at the grocery store and one at the doctors office. The rest luckily have been at home. I am 62 this November and could not believe I could not get up. I have finally taught myself using my arms to back up against a low chair and use my arms to get myself up in the chair. I crawl too when I fall. I have gone to just having flowers in pots on the front porch. So glad we connected. Lynn

Prescription drug OxyContin taken every 4 hours with stool softener (non-prescription); Effective but carefully managed to avoid addictive drug symptoms; this effectively manages severe pain, but discomfort persists and has worsened with time. I am 86, and walking more than 6-8 city blocks even with medication is difficult and/or painful. I doubt any alternative course exists, but I would like to get off the prescribed OxyContin if at all possible. Please forward any alternative effective regimens that you employ. Thanks and accept my gratitude

I am well aware of the risk of falling and all that entails. On stairs I move down sideways one step at a time slowly, and cross roughly paved streets with care. I have fallen once or twice but luckily resulting in only minor injuries. Just take your time and be extra careful. I hold my wife’s arm for safety. I hope you also have a thoughtful companion. Hang in there!

To all members of the peripheral neuropathy group, let’s post comments and/or advice frequently to assist each other😃; It can only help in the absence of new pharmaceutical discoveries....can’t hurt.....and there are 20 million of us although I am not diabetic. Prostatic radiation was the likely cause of permanent nerve damage resulting in my case of peripheral neuropathy.

What is the best treatment you have tried for foot neuropathy if you do not mind saying?

The medicine Lyrica has helped reduce the pain.This is related to monoclonal gammapathy that I have had for the past 20 years. I also receive a monthly infusion of IVIG.

Hello @jamesbstarkman, @pennellsp and @terrialbert, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. We are happy that you have jumped right in and shared a little about your neuropathy journey and what is helping you. One of the best things you can do is learn as much as you can about your condition and become become a better advocate for your health.

My two go to places for neuropathy information when I want to learn more are:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

When I'm searching for research and medical type information I also use Google Scholar (https://scholar.google.com/) a lot to find the most recent information. You can sort the results by year which makes it a little easier to find the latest published information.

You may find the following discussions helpful:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Small Fiber Neuropathy burning?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-burning/

What worries each of you the most about your neuropathy diagnosis?