Living with Neuropathy - Welcome to the group

Hello. I am 58 and newly diagnosed with hereditary peripheral neuropathy primarily in my legs - which, of course, I've probably had for a really long time. I can track unusual "tingling" and numbness in my feet and sometimes my hands as far back as my 20s. Usually after prolonged periods of being on my feet. About two years ago I noticed I seemed to have lost all "spring" in my step. About nine months ago, my symptoms became pronounced enough that I began to actively seek out an explanation. I finally received a fairly definitive diagnosis about a week ago.

I've always been a strong, physically active person who could always rely on his body to perform well under most circumstances, so the fallout from my diagnosis is as much about my self-definition - my role in the world, my coping strategies - as it is the physical symptoms. I am very interested in discussing practical means to stay as strong and as active as possible while still accepting the reality of the disease.

At this point I have mild tingling in my feet, legs and a bit in my hands most of the time. (This wasn't a big issue until I had an extensive EMG test about a month ago. The doc doesn't think there's a connection, but I swear the tingling became much more pronounced immediately after the test). I have apparently sustained some muscle damage in my calves as well. As an active person, it was this muscle damage and resultant weakness that ultimately made me seek medical intervention.

I am an artist / creative type by vocation with all the economic insecurity that goes along with that. One of my great strengths is that I've felt I was willing to take on almost any kind of work to support my art. I have waited tables, washed dishes, worked in shops, and done landscaping over the years. One spring I literally dug ditches for most of May and June. Suddenly these income streams don't seem terribly practical. Even just being on my feet in a shop all day seems a little beyond me. So there are real survival issues here as well.

Over the years I've also worked freelance as a graphic designer (print primarily) and illustrator. My initial thought is I should focus on these much more intensively as an income source.

I am also a certified personal trainer with a certificate in senior fitness. I've always had an interest in physical fitness and I think staying active becomes more important as we get older rather than less so. In some ways - as trainer and an active person - I find my diagnosis both fascinating and challenging. I'm thinking of starting a blog specifically about maintaining fitness and mobility even in the face of my diagnosis. I think it could be interesting, yes?

Due to a recent, unrelated surgery I've had to limit my physical activity for the last 10 days or so avoiding all undue exertion. I think being inactive had made the symptoms - tingling, weakness, stiffness - seem much worse. I have the green light to start pushing myself a bit as of tomorrow. I can't wait to get started.

So... that's pretty much my story. I'm not sure if I'm posting this in the appropriate discussion thread but I figured I had to start somewhere. 🙂 I am open to any and all responses and information. Still kind of reeling here. Thanks so much for reading. - John (Anduarto)

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Hello. I am 58 and newly diagnosed with hereditary peripheral neuropathy primarily in my legs - which, of course, I've probably had for a really long time. I can track unusual "tingling" and numbness in my feet and sometimes my hands as far back as my 20s. Usually after prolonged periods of being on my feet. About two years ago I noticed I seemed to have lost all "spring" in my step. About nine months ago, my symptoms became pronounced enough that I began to actively seek out an explanation. I finally received a fairly definitive diagnosis about a week ago.

I've always been a strong, physically active person who could always rely on his body to perform well under most circumstances, so the fallout from my diagnosis is as much about my self-definition - my role in the world, my coping strategies - as it is the physical symptoms. I am very interested in discussing practical means to stay as strong and as active as possible while still accepting the reality of the disease.

At this point I have mild tingling in my feet, legs and a bit in my hands most of the time. (This wasn't a big issue until I had an extensive EMG test about a month ago. The doc doesn't think there's a connection, but I swear the tingling became much more pronounced immediately after the test). I have apparently sustained some muscle damage in my calves as well. As an active person, it was this muscle damage and resultant weakness that ultimately made me seek medical intervention.

I am an artist / creative type by vocation with all the economic insecurity that goes along with that. One of my great strengths is that I've felt I was willing to take on almost any kind of work to support my art. I have waited tables, washed dishes, worked in shops, and done landscaping over the years. One spring I literally dug ditches for most of May and June. Suddenly these income streams don't seem terribly practical. Even just being on my feet in a shop all day seems a little beyond me. So there are real survival issues here as well.

Over the years I've also worked freelance as a graphic designer (print primarily) and illustrator. My initial thought is I should focus on these much more intensively as an income source.

I am also a certified personal trainer with a certificate in senior fitness. I've always had an interest in physical fitness and I think staying active becomes more important as we get older rather than less so. In some ways - as trainer and an active person - I find my diagnosis both fascinating and challenging. I'm thinking of starting a blog specifically about maintaining fitness and mobility even in the face of my diagnosis. I think it could be interesting, yes?

Due to a recent, unrelated surgery I've had to limit my physical activity for the last 10 days or so avoiding all undue exertion. I think being inactive had made the symptoms - tingling, weakness, stiffness - seem much worse. I have the green light to start pushing myself a bit as of tomorrow. I can't wait to get started.

So... that's pretty much my story. I'm not sure if I'm posting this in the appropriate discussion thread but I figured I had to start somewhere. 🙂 I am open to any and all responses and information. Still kind of reeling here. Thanks so much for reading. - John (Anduarto)

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I don't know if this has been discussed previously and, if so, I apologize for my redundancy. I just read an article in a health column this AM about neuropathy and it's causes - which know one really knows that answer. There are lots of guesses, but nothing definitive yet. However, the one learned item for me is that exercise and good blood sugar management can reverse the effects. Mine is mostly during the night when I am not moving, but there are a few things we can do to alleviate some of the effects.

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It sounds like you have diabetes. My neuropathy began about two years ago.

Today I read about three approaches to NP. Chromocell, a private company in NJ,is working on a treatment that may be NON-ADDICTIVE.

Also, marijuana got a positive mention for various pains, not just NP.

A combination of Acetaminaphen (Tylenol) plus a NSAID might be as useful as an opiod!

I still think Ketamine needs to be evaluated.

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It is no longer legal in SC where I live, but I was prescribed Maribol (I think), which is a synthetic marijuana, to stimulate my appetite after surgery because I was losing weight rapidly. It worked great for that, but was also the best pain killer I have ever used. If our legislature and intolerant society would get over the idea that everyone who ever touches marijuana becomes an out of control pothead and then starts using cocaine and heroin and LSD, we would have a plentiful supply of pain killing medication that no one has ever OD'ed from, but I likely will not live that long. Yes @oldkarl, my neuropathy is from diabetes and is still very minor compared to many. I have only been an insulin dependent diabetic since I lost a third of my pancreas and the beta cells residing there.

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