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?

Once a problem starts then it goes on. Nerve problem leads to so many issues. Movement disorder, psycological problems etc. I now understand that all these happens only due to the damage in brain only. None of the medicine gives cure. Atlast we have to come to a conclusion that we have to live with this throughout life. I have tried so many medicines but of temporary relief shorter period only. God only knows. In frustration. Venki.

Liked by Darlia

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Venki … what’s your source for the brain cause?

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Venki, it is a hard reality to absorb and it does suck. Treatments and medications, etc. generally provide the best assistance possible to manage the symptoms and pain, but they are not a cure. Once one gets over the reality check, though it can be really hard at times, focus on those things that bring joy. In frustration with you.

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@venki

Mam, I am a CSVD patient with Ulnar Neuropathy problem also. Now my left leg swelling, numbness have healed but I don’t have sleep during the nights with severe headache persists right through the day. Doctors after seeing the MRI Images say nothing to worry and have prescribed sleeping dosages. Kindly advice whether my problem in sleeping and continuing headache will lead to some other problems. Venkatesan.

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Hi @venki
I recommend that you follow both the Neuropathy group and the Cerebrovascular Diseases group. If you follow groups, you will get notifications according to your interests. Go to this link to learn how to follow a group https://connect.mayoclinic.org/get-started-on-connect/#follow-a-group

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@venki

Mam, I am a CSVD patient with Ulnar Neuropathy problem also. Now my left leg swelling, numbness have healed but I don’t have sleep during the nights with severe headache persists right through the day. Doctors after seeing the MRI Images say nothing to worry and have prescribed sleeping dosages. Kindly advice whether my problem in sleeping and continuing headache will lead to some other problems. Venkatesan.

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Thank U Mam. Thank U for the response. Apart from Neuropathy I am having Brain shrinkage, Cervical Spondylosis and slight Vericose veins, Tremors in my right hand. All these have made my life miserable. I don’t know for what I should take treatement. Till Jan’2017 I had no problem. Now One after another I am suffering. I am giving utmost importance to Neurological problem & I will act as per your instructions. Thanking you.

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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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@anduarto

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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@anduarto Hi, John. Welcome to the club. Yes, you are at the proper site. I have neuropathy all over my body. Sometimes just a small area, sometimes it seems like everywhere at once. But strange as it may seem, there are a few advantages. Because of heart failure and some other stuff, I wear compression stockings every day. They are difficult to put on, but very comfortable. a couple weeks ago in putting on one, I was a little careless and snagged my right pinky toe and broke the middle section toe into several pieces, the next inner section, and a section of the second toe. When I went to the doc to see if I was taping it properly, he pulled and twisted and got it into the good alignment, then taped it again. He was amazed that I did not feel a thing all the time he played “This little piggy……” with those toes. What a relief! Anyway, You can try lots of stuff for your neuropathy, but do not be ambushed if nothing works. It probably won’t. So do what you can and enjoy your. It sounds great. Old Karl

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@anduarto

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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Ah… How old are you, oldkarl?

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@anduarto

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 John (@anduarto), welcome to Connect. I also have idiopathic small fiber peripheral neuropathy and your story pretty much matches mine…rather than type it all here again, here is the link to my original post if you want to read:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

Do you have any pain with your PN? I only have the numbness with my PN.

John

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@anduarto I am 77, this time around

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@anduarto

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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@anduarto 77. Married 58 years, 4 children, 10 grandchildren, 16 great grandchildren.

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@anduarto

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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Hi John, Thanks so much for your response and directing me to your earlier post. No, thus far I haven’t really had any pain. Numbness, tingling, most especially weakness due to the muscle loss in my calves have been the main issues. Like I mentioned, I recently had an unrelated surgery which necessitated “taking it easy” for about two weeks. And during that time ALL my neuropathy symptoms got worse. While I don’t expect miracle and I accept that this is a chronic, lifetime diagnosis, I’m also convinced that “what we do” can have a very real impact on how we feel and function.

I also spent several minutes messaging my feet last night as I watched TV. Really felt better afterward.

Thanks also for the links. I look forward to exploring them. Continued good luck with your regimen! – J

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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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@gman007

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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@gman007 Just a small thing. Neuropathy can come from many different disorders. Yours must be from diabetes. Mine is from amyloidosis.

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