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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Feb 28 10:08am | Replies (6760)Comment receiving replies
Hi, just found this group today. I have had PN for a couple of decades. Mine is alcohol, 5 years sober now. I have it in my fingers and from my feet to my waist. 5 years ago I began exercising, last year I averaged 8 miles per day on my feet. This did wonders for balance and not walking with clukiness. I could move normally. Recently I have had to take days off from the routine. I noticed that in less than two days my legs are weak and I’m walking clunky and the tightness is at a higher level. I’m wondering if I am going to have to move 8 miles a day the rest of my life or become in a wheelchair? Does anyone else find that big a difference between exercise and not exercising? Also gabbapentin does nothing but make me forget. Ha ha
Replies to "Hi, just found this group today. I have had PN for a couple of decades. Mine..."
Hi @jum13, I would like to add my welcome along with @ray666 and others. I'm glad to see that you have started on your journey to learn more about neuropathy and what helps. There are many discussions on different topics in the Neuropathy Support Group here on Connect that might be good to scan through - https://connect.mayoclinic.org/group/neuropathy/.
I can't walk any distance but I do have a recumbent exercise bike of sorts (Teeter FreeStep cross trainer) that I try to use 30 to 45 minutes a day and I find if I go for a day or two without riding the bike that my limited walking is even worse. So I do think there is something to that saying "motion is lotion".
Have you looked into specific exercises that can help build up your leg strength?
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Hi, jum13 (@jum13)
Welcome to Connect! Pull up a chair and make yourself at home. I'll keep my reply short as I know you'll get better answers to your questions in short order than I could possibly give––although our situations are not entirely dissimilar. My neuropathy is large-fiber polyneuropathy, which means, for the most part, I'm blessed with having no pain but big, big balance issues: getting around safely, especially outdoors, is a study in deep concentration. I also have a history of alcohol, but I quit something like 35 years ago, so long ago that I no longer count the years. The neurologist who spotted my alcohol abuse (a "shadow," she called it, on a brain MRI)was pretty positive that my history with alcohol had nothing to do my neuropathy today. You see, that's it, too: my neuropathy is idiopathic, meaning "cause unknown." I used try to problem-solve the cause, but gave up trying. Nowadays I concentrate on trying to prevent my balancing from getting worse, chiefly by doing all I can to strengthen my legs. I'll stop at this point. I'll be watching with great interest the replies you get––and I'm sure you'll get many!
Cheers!
Ray (@ray666)