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?
Interested in more discussions like this? Go to the Neuropathy Support Group.
@straightway22
I've had small fiber idiopathic polyneuropathy for a number of years, and last year was told I have the beginning of autonomic neuropathy. It could be at least partially responsible for several things going on with me - double vision, sudden random loss of knee muscle, urinary issues, ED, not picking up my feet enough... I may be asking the same question as you, one of these days. It's just impossible to know the future with neuropathy
Jim
I use a device at the fitness center where I work out called a Sanddunestepper. You stand and walk on it (holding onto something if you need to). It mimics lwalking on sand so it challenges your feet and legs and helps my balance. But my feet burn instead of are numb so I don’t know if it will help you or not. You can see it in line at Sanddunestepper.com and buy one. They cost around $250 plus shipping from CA where they are made.
@catro the Sand Dune Stepper - https://www.sanddunestepper.com/ certainly looks like it would be helpful to me. I watched a few YouTube video reviews and was pretty impressed. I think it would really help with balance and leg strength. Thanks for sharing!
Diabetes Type II and peripheral neuropathy often go together. For those of you who have both of these disorders, I thought you might find this Mayo Clinical Trial interesting. Please click on the link to read more about it.
https://connect.mayoclinic.org/page/adult-pain-medicine/newsfeed-post/study-opportunity-seeking-volunteers-with-type-2-diabetes-and-painful-peripheral-neuropathy/
I have a form of PN that causes pain in my feet and lower legs and recently in my hands. But I can be pain free all day, go to sleep and three hours later wake up in pain. Has anyone given you an explanation for what happens after you go to sleep that causes the pain to come on?
@catro Hello. To the best of my knowledge nerves rest and attempt regeneration during sleep. Similar to recharging your battery.
Rachel
@catro, there have been a few theories discussed, I like Rachel’s response the best. 😁My neurologist said it is because when we are at rest we are more aware of the pain; I am convinced it is a matter of poor circulation while in a prone position. Helen
Isn't interesting, I used to wake in pain throughout the night for quite some time. Now I've shifted and can sleep through the night however, the games begin again upon movement. And I do wake in pain no matter what. Hard not to have anxiety when you think about the challenges nighttime brings and waking. I agree, @helennicola, resting time does make one more aware of pain however, my abilities are so far gone at this point that resting is my only go to. Typically it's with heat to calm. Stinks to be a car with real bad wiring! Have a nice day all. 🌞
Rachel
Have spinal stenosis! Nothing work! Had stimulator installed in back 2 days ago! Working great! Ck out,
I don’t agree with your neurologist although one of my doctors said the same thing. I can be sitting in my chair massaging my bare feet and legs and concentrating on how they feel and noticing that they feel perfectly normal. 30 minutes later I’m in bed with my feet and legs burning. So what’s going on?