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.
My balance is awful,and I also need to hold onto a walker or a cane.
Walking is tough for me, especially doing a ramp or even a slight incline, disrupts my balance.
Yes I also have to hold onto something because my balance is so bad.
I can’t feel my feet, and I can’t grip the floor when I walk.
Thank you
My name is Rich. I am extremely depressed. Can't walk without a walker. Used to be very active, now stuck at home with no real support. Maybe you could refer me to others close by me that I could at least talk to once in a while. I am afraid Neuropathy has finished me. My next step will be a Long Term Care facility to go die in. I live in Fair Oaks CA.
Welcome Rich @rajoy, I know you are not alone. Neuropathy does take a toll on us. I know it's difficult to accept new limitations, especially when you can't do things you used to love doing. Local support groups can be difficult to find especially after COVID. The Foundation for Peripheral Neuropathy does maintain some lists that might be helpful here - https://www.foundationforpn.org/support/support-groups/.
You can also find a lot of support and understanding here on Connect. Here are a few discussions that might be helpful:
--- Increasingly Difficult to Accept Peripheral Neuropathy: https://connect.mayoclinic.org/discussion/nor-accepting/
--- PN? What's good about it?: https://connect.mayoclinic.org/discussion/pn-whats-good-about-it/
--- PN: Do You Think About Things Like This, Too?: https://connect.mayoclinic.org/discussion/pn-do-you-think-about-things-like-this-too/
How long have you had neuropathy? What do you find most difficult to deal with?
Hi, Rich. Glad you posted to the group. Is your PN a result of diabetes? chemo? idiopathic/cause unknown? Is it just in your feet/legs? Also in hands? What doctors have you seen and what have they had you try to help? Is surgery an option that might improve your situation if based on stenosis/compression of nerves? So sorry to hear the big D has a hold on you. Certainly understandable with this disorder and its limitations! Hope you will find sharing with kindred spirits here in Connect will be of help!! Best wishes! Mike
I'vebeen a member for awhile. I have neuropathy from chemo. I havent been able to drive for several years. I accidenally topped taking atenolol for my high blood pressure. I found my feet and hand have more feeling. I'm hoping it will continue. I looked it up and it said atenolol can cause peripheral neruropathy.
I sure made a mess of the comment above. My computer keys stick and I didn't notice the mistakes. Anyway, I went out to the car. I didn't try to drive yet, but I can definitely feel the pedals better.
@dbeshears1 hi Debbie, I’m sorry to hear about your struggles. I totally understand. I have severe polyneuropathy, and recently started using a walker and cane also. In my house I don’t usually need any assistance unless I am dizzy and weak. However, outside I use either the cane if I’m not going too far or the walker.
My walker has a seat, and there have been times when my legs were too tired for me to stand so the seat comes in handy.
My polyneuropathy was caused by an autoimmune disease that inflamed my arteries and caused damage to my nerves.
I don’t take medication because nothing agrees with me so I have to use topical painkillers or Tylenol.
Hi, Rich
I wish I had good answers to your questions, especially about others in your area you might talk with. I'd suggest continuing to post here, maybe not only on the Neuropathy forum but also on other forums. Aging Well might be a good forum to start with. I sometimes post there. I'd bet someone from Fair Oaks will reply to one of your posts sooner or later.
I remember Fair Oaks. When I was living in So. California, I had a good friend in Placerville whom I'd go to visit. I remember driving through Fair Oaks on my way to Placerville.
I look forward to seeing more of your posts in the months ahead.
Cheers!
Ray