Hello, It is good to discover this site and begin to read through some of the stories others have posted. I sometimes feel quite alone in my struggle with neuropathy. It is difficult even for my beloved spouse to understand. I look well and continue to be very active--blessed in that way. I ski vigorously, walk several miles a day when that is not possible, bike during the summer, etc. But I hurt, too. And am mostly numb from the waist down. I am 67 years old, male, retired (mostly). My only other health concern is aortic stenosis. My heart functions well, but I will need a valve replacement in the next few years.

My story began as some of yours did, with a sharp pain in one toe in one foot. Nobody could figure out why. I saw a podiatrist, who removed the nail and another, who cut a tendon. No change. I could still do what I was doing, but end up with screamworthy pain at times. If I took off my shoe, it would pass quickly. Later, I noticed that the toes on that foot had become rather numb, especially the third and fourth toes. And then, a month or so after that, I noticed that the other foot was also becoming numb. I went to my GP; he diagnosed me with Morton's Neuroma and told me to buy wider shoes, which I did. Little improvement.

About that time, I had a cystoscopy done, to see if there was a way to manage frequent urination--prostate enlargement was not the problem it turned out. But instead, I ended up with a urinary tract infection. The doctors ordered cipro and within days, I had shooting, burning, prickling pain up and down my legs. Soon after, numbness set in. This was 7 months ago. Since, the burning pain and superficial numbness has crept up to my waist. I have also experienced burning and odd feelings of discomfort around my ribs and heart on the left side, and often, tingling and "falling asleep" feelings in my fingers on both hands, especially at night in bed. That can quickly be remedied by moving my hands, but it comes back quickly, too. I have no idea if that is related to the PN in my lower body.

I've been to Mayo twice and have another appt soon. So far, no diagnosis beyond idiopathic. Most tests are normal, although my autonomic reflex screen was somewhat strange. I need to have that repeated without taking certain medications. But to this point, the docs have ruled out some conditions and still do not have an answer as to why I am going through this, whether it will go away, continue to progress, etc. All of which makes me very, very anxious. I have a hard time thinking about anything else. Doc prescribed Gabapentin but it does not seem to help; rather, causes my vision to blur slightly and often, I have a slight headache. I am thinking of discontinuing it.

I am using an app called curable.com to try to reprogram my brain from focusing so exclusively on the pain. This has been the most helpful thing so far. Also: prayer.

But it feels pretty lonely and sometimes kind of hopeless. I desperately want to handle aging better than this.

Sitting is very difficult for me. An hour or so and I'm pretty uncomfortable. I desperately want to see my Mom (89 and not in good health) and two of our kids, all of whom live in the NW, far from us. So we are planning a trip. I must admit, I am concerned about traveling and discomfort--and I don't want to continually complain about my neuropathy sensations to my wife!

Well, thank you for listening and also sharing your stories. I hope to glean some helpful information from you and if nothing else, my story, will also help you to know that you are not alone in your suffering.

Jump to this post