Polyneuropathy ups and downs

Posted by nrivers @nrivers, Apr 1, 2021

Hi everyone, I just wanted to share that I had a very bad night last night. I have no idea why. All night long, my legs and feet were burning. My back, too, was burning in a patch behind my ribs. Meanwhile, no matter where I would move my hands, they would "fall asleep" within minutes. Could not sleep. Yet, today is a day that I have to be "on," for work and family. It's hard to function.

I took a hot bath in the evening, which felt so good, but…maybe exacerbated symptoms? I also had a small glass of scotch, something I seldom do anymore, as my wife and I were winding down for the night. I used to have a drink like this several times a week; now, I wonder if it's safe at all. Did it exacerbate my symptoms?

I have had neuropathy for about 8 months. Starting with my burning and then numb toes and working its way up my legs. Then, into my back and hands. And I smell odd smells. It is primarily sensory, though I think there may be an autonomic piece to it as well. Fortunately, at this point it has not affected my mobility. I am 67 and very active physically. It would be really hard on me if I could not walk and exercise daily. So I must be thankful for that.

I think the worst of this, for me at least, is the fear that it will just get worse and worse. This is what I hear from so many others. Like most people, I would like to enjoy my family–kids, grandkids, spouse–and activities I've had too little time for during a busy career. The joy of these experiences is somewhat compromised now; it feels like it may become more and more so. It is not death that worries me, so much, as it is what life may become. Perhaps you have had such thoughts?

I do think I am doing a lot to help myself: mind/body work, exercise, consultation with physicians at Mayo, continuing to interact with people. But it is hard. Sometimes I just pinch myself: can this really be happening to me? But then again: why not? Can you identify?

Anyway, I do value sharing my thoughts with people who have some of the same experiences. And I value listening to your experiences, too. I hope this may be helpful to all of us.

Thank you.

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Hi @nrivers, I think you are saying out loud what a lot of people with any kind of neuropathy may be thinking. It's been a few years since I've felt that way but I can relate. What has always bothered me is that the treatments with few exceptions are all related to addressing the symptoms and not the end game of fixing the problem, if there is a fix. I think you mentioned Curable.com in another post. When I looked it up it sounds to me a lot like brain neuroplasticity. Not saying it's bad but it seems just like another method to fool the brain into ignoring pain signals coming from peripheral or other nerves. Drugs do the same thing in my non medical opinion. I finally found my happy place and am resigned to staying the course with the supplements I'm taking since my neuropathy seems to have stopped progressing and I've recently been having some level of normal feelings back in my feet frequently but not all of the time. I'm not sure why but I'm not going to complain but just relax and enjoy my hopefully new normal.

You are right about having ups and downs with neuropathy. I think it helps to talk about them and realize when you are in the down part, keep taking it one day, one step at a time because there hopefully will be an up coming your way.

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