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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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@alice90 Hi Alice - balance is not an issue for everyone with peripheral neuropathy. Some have pain only, good balance and in my case, I have no pain, numbness only, but my balance is not so good. I am in my mid 70's and often walk with a cane. At times, I've been to physical therapy for balance exercises which do help. Keeping your balance is a challenge and yes tiring. I wish you the best and do keep moving with safety in mind the best you can. Ed
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2 Reactions@alice90
I am also 91 with PN. I also suffer from bad balance and have to be very careful.
Dan
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2 Reactions@maddie14
Good morning maddie14,
I am 80 years roaming about and ride a three wheeled, semi recumbent 24 inch wheels, about 100 or so miles every week: Rain or shine, my wife and I, with all weather gear as required have over 4,000 miles on our machines: Foot pedal only, no electric assist.
Thanks for your writing and all that I can share with you is to have faith in yourself and just keep, keeping on. Move as much as you can and weather or not your issues continue, the effort put into your mobility will reward you for doing all that you can to keep on going. Attitude is one of my best tools that keep me and my gal on our bikes and helps us to remain in the game of life.
Jofree
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2 ReactionsI am 64 and have been diagnosed with non diabetic neuropathy. I was told by a neurologist that 30% of people with this have no known reason for it and I will just have to live with it. Was given gabapentin but am reluctant to take it because of the side effects. Is there any treatments? Is there anything I can do? So far it is just in my feet and has been slowly getting worse over the past 2-3 years.
@johnbishop this is a new problem for me although I have suffered 4 falls with the most recent ending up with a brain bleed. I am using a cane now and it really helps. I am waiting for an appointment with a Neurologist to get a diagnosis. It is so helpful to be a part of the support group.
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2 Reactions@itsmeagain Hi Joyce.....What was the dosage...how many times per day did you take the Alpha Lipoic pills
@jimminnesota I have PN also and am not taking anything except alpha Lipoic acid, 600 mg daily. Starting g to have some ankle swelling and not sure if it’s related to the neuropathy. Anyone else having swelling? I exercise, work part-time and stay as active as I can. I’m in my mid70’s.
Great to be part of this group. I am 72 and have idiopathic neuropathy. I don’t have pain, just tingling. I’m taking 600 mg of alpha Lipoic acid daily but it doesn’t seem to help. I was also taking 1000 mg of Turnetic daily but that also had no positive affect and was causing some stomach issues so I stopped taking it. I am very active, exercise, work part-time and now starting to experience some lower leg and ankle swelling, in the last few days. Anyone have any similar problems with swelling? Thank you.
@alice90
Hi Alice - I take rounds of PT when I feel the need, and my therapist is really encouraging, understanding that for many of us, just our necessary daily activity is exercise for us. In my case, I feel like I’m walking on stilts, all stiff legged because I don’t want my knees to buckle on me which was the biggest problem when I first came down with my PN. It’s really tiring walking and standing that way, and it aches.
My therapist helped me with ways to lessen the discomfort and adopt different methods of standing & walking to help lessen the burden on my knees and thigh muscles. In my case, it took a lot for me to learn how much I could let my knees bend a little and trust not falling. It took leg exercises to make sure I was keeping the muscles around my knees strong. I find ways to make standing up doing the dishes more comfortable. It all helps put less strain on my back as well.
I go back to PT every so often to help make sure my technique remains correct and safe. The last thing we need is a fall! If you haven’t already, I hope you see what PT may be able to offer your specific situation.
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3 Reactions@jimminnesota Also from MN w neuropathy, which I had before with pre-diabetes. Now in full diabetes. I switch out my shoes and socks during the day and I think that helps. Hokas are a God-send for me during the day but late afternoon, I switch out to a Keen shoe with a smaller sole. Just that one shoe helps me - it's more flexible than the Hoka. Can't wear either shoe all day and I need the arch support and stability, but I went to podiatrist who fitted me for orthodonics and diabetic shoes and they don't help me nearly as much. Try to exercise the feet to keep the circulation going: walk, foot flexes, try tip-toes (with support), stationery bike. Had friend who went through all kinds of "treatments" that didn't work. I would say the neuropathy has plateaued BUT, for me, consumption of sugar makes it worse. Doc suggested I look into CBD. 70 years old. I did gabapentin for two years several years ago and had no side effects other than to be happier. Still, trying to keep off off prescription drugs as much as possible.