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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: 4 hours ago | Replies (6240)Comment receiving replies
Hi kpotter62, I'm also new to the group. I'm also 80 years old and dealing with exactly the same thing that you're going through. I have it for maybe over 20 years. Nothing has worked for me and I've tried all the things. Gabapentin different creams duloxetine all other antidepressants. Nothing has worked. Went to neurologist. Put me through tests. Said there's nothing they can do. Well I ended up going to Mayo clinic about 10 days ago and went through a battery of tests. I think they said there was 60 all together. What's blood work and everything? And they said that I do have a few like a small fiber on neuropathy and guess what? There's nothing to do for it. I went there full of Hope. Thought for sure they would be able to cure my feet. My feet are totally dead but I do have sharp shooting pains all the time. I went through the burning and the feeling of bugs crawling up my legs and then my feet felt like I was walking on golf balls or hard rocks. I've had everything you can imagine and now I'm going through where my left leg will suddenly feel like I have a magnet in my left leg and it's being pulled to my right leg. It doesn't actually pull but it feels like it. It's a very strange feeling. I fought off using a walker for all these years but my balance now has gotten so bad. I can't trust only in the house. I can walk without a walker as the Mayo clinic said I sort of couch surf now. The clinic was a wonderful experience with wonderful doctors and nurses and staff. I couldn't have been treated any better. I'm very happy I went. It was quite the experience and I feel comfortable now knowing from the specialist that there's nothing they can do. I've accepted it now, but I'll tell you the pain is terrible, especially at night. I don't sleep well anymore. I wake up quite often now and stay awake, play on my phone, etc. My heart goes out to all of you suffering, the way that I know you have been. The clinic told me that pretty soon my feet would be totally dead and then I wouldn't have to worry about the pain anymore except for then. It's not good because there's nothing under your feet. It feels like cuz they're just like you had one legs or something. I know I'm not explaining myself very well, but I'd be happy to answer anybody's questions if you have any. God bless you all and thanks for listening
Replies to "Hi kpotter62, I'm also new to the group. I'm also 80 years old and dealing with..."
Well, we speak the same language, because I understood it all. I remember having the ‘rocks’ in my shoes. Seems like 3-4 years ago. And, not sure if I had socks on or not. Then weird sensations in my feet and ankles at night, starting about a year ago. This summer, I didn’t feel balanced when I walked. Bought Hoka shoes. Helped until it didn’t. And, now numbness in both feet, left foot worse; don’t feel anything under that foot at times. Started with my primary doctor. She said take B12. Got a a bit worse and got a referral for neuro. Blood work and nothing to be done. Cannot cure numbness. Gave me lopoic acid. I started using a cane about 2 weeks ago. Still slip-sliding away. Last week, a podiatrist took a look at the feet, a few questions, a quick poke with a pointed tool, and said nothing to be done. He said I should not have let myself become dependent on the cane. 🤔 I slipped several times getting into the building, with the cane. And, today I just put two walkers together. Much safer feeling, legs still feel heavy but moving better and faster. Left foot feels stuck, when I can actually feel it, and stays a bit behind. The stairs are a nightmare and I’m getting myself together to just move downstairs. Getting up and down the stairs, hardest part of my day. I’m sorry to hear you have pain. I have been reading people are given gabapentin and it does not work for most. I haven’t read too much that’s encouraging, but I am taking the supplements. Adding B6 and B-complex per podiatrist. Haven’t been on anything long enough to gage if it helps. What has helped a bit….I do use a foot massage machine and a recumbent bike. Massage my feet with lotion with menthol. Wear my old Sketcher's inside the house now. I haven’t had any pain really. Except for the ‘rocks’, I just went right into numbness and quickly needing a cane. I haven't really accepted it, because the numbness progressed so fast. I can drive. Right foot is much better. Just cannot get out like before. Maybe I’ll try once I break in the walkers.
I hope you can continue to move a bit with a walker. I’ve ordered a portable elliptical machine, to pedal from the couch. Ha! Anything that makes the blood flow. I come on here a bit everyday. Only people who understand what we are going through. Best wishes to you and thanks for sharing.
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Welcome @cinnspice44, I'm almost 82 and have been dealing with neuropathy for almost 40 years. I don't have the pain that you do but do have the numbness along with balance and other issues. I'm glad that you found Mayo Clinic Connect. There are a lot of us here on Connect so it's a good place to learn what others have shared about what helps them. You might want to scan through the list of discussions in the Neuropathy Support Group to find other topics you are interested in. Here's a list of the discussions - https://connect.mayoclinic.org/group/neuropathy/.
The Foundation for Peripheral Neuropathy is also a great place to learn more about living with this neuropathy beast - https://www.foundationforpn.org/living-well/.
Have you looked into physical therapy to learn some exercises to help with balance?