Polyneuropathy ups and downs
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.