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Living with Neuropathy - Welcome to the group
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?
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I get that tingling in my arm and hands sometimes when I sleep on my side with my arm under the pillow or at the edge of the pillow. I wonder if it may just be the position of the arm and it may be compressing or stretching the nerve? Here's some info that discusses the related nerves, etc..
What to know about a pinched nerve in the arm: https://www.medicalnewstoday.com/articles/pinched-nerve-in-the-arm
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1 ReactionHello @ljarman, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Connect is open to all who seek support and want to connect with others who share similar symptoms. I'm glad that you found Connect. It's a great place to learn what others have shared and hopefully find something that helps with your symptoms. There are many different discussions in the Neuropathy group and if you don't see what you are looking for it's easy to start another discussion.
Here are a few discussions you may want to check out and see what others have shared...
-- Generalized Sensorimotor Peripheral Neuropathy over my entire body: https://connect.mayoclinic.org/discussion/back-again-its-been-a-while/
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Can you share which of your symptoms bothers you the most?
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1 ReactionI sleep the same way you describe but that normally doesn't make it worse (I always feel it). I will certainly check out that article... thanks!
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1 ReactionFalling and pain have been big issues for me as well as incontinence.
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1 ReactionLike 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.
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1 ReactionHi, 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.