Incontinence and pain in hands?

I am new here and just saw this. Yes, I get hand pain when I pee. It is neurological for me. Doctors thought for awhile that I had fibro. Turned out to be a serious form of neuropathy that really affects everything including my heart. But the hand pain is really weird, isn't it. A lot of my nerve pain is weird.

Hello @itiswhatitis and welcome to Mayo Connect. You mention that you have a serious form of neuropathy. I would be interested in learning more about how this affects you.

On Connect, we offer a support group for members with neuropathy. Here is a link to those discussions: https://connect.mayoclinic.org/group/neuropathy/. As you read the posts, you will undoubtedly find others who have posted about similar problems.

How long ago were you diagnosed, and what are your most bothersome symptoms?

@hopeful33250 I have small fiber, large fiber, autonomic, and trigeminal neuralgia. It is the autonomic that is serious and life threatening. I started symptoms in the early 90's and was diagnosed in 2005. I didn't get my type 1 diabetes until 2012 when pancreatitis shut down my pancreas. So it is possible my autoimmune diseases caused the neuropathy. I started with dizziness and then I got digestive issues and struggled for years with those and the other neuropathies causing severe pain. Now, I was living on a feeding tube but had it removed for quality of life sake. I have Cardiac autonomic neuropathy and my blood pressure is extremely unstable. I can go from 220/120 to what it was this morning...58/35. The low blood pressure is the worst and I can barely walk because of it. Exercise is impossible. I have incontinence because I don't feel that i have to go. My legs, from the knees down, are completely numb and have no reflexes anymore. I have no ability to self regulate my body temp...and that is very uncomfortable. The trigeminal neuralgia gives me very severe headaches. I have basically gotten to the point of...what symptoms don't I have. It is extremely hard to live with and I have been disabled since I was 25...I'm 57 now. I am all alone in life so the county set me up with home and nursing care. I have chosen to have a DNR at this point because things are so painful and overwhelming. My neurologist won't treat me anymore and wants me to go to Mayo to inquire about a vagus nerve stimulator. Unfortunately, the transportation is likely impossible. So, there you go...the story of me and I will definitely look up that support group.

@hopeful33250 I have small fiber, large fiber, autonomic, and trigeminal neuralgia. It is the autonomic that is serious and life threatening. I started symptoms in the early 90's and was diagnosed in 2005. I didn't get my type 1 diabetes until 2012 when pancreatitis shut down my pancreas. So it is possible my autoimmune diseases caused the neuropathy. I started with dizziness and then I got digestive issues and struggled for years with those and the other neuropathies causing severe pain. Now, I was living on a feeding tube but had it removed for quality of life sake. I have Cardiac autonomic neuropathy and my blood pressure is extremely unstable. I can go from 220/120 to what it was this morning...58/35. The low blood pressure is the worst and I can barely walk because of it. Exercise is impossible. I have incontinence because I don't feel that i have to go. My legs, from the knees down, are completely numb and have no reflexes anymore. I have no ability to self regulate my body temp...and that is very uncomfortable. The trigeminal neuralgia gives me very severe headaches. I have basically gotten to the point of...what symptoms don't I have. It is extremely hard to live with and I have been disabled since I was 25...I'm 57 now. I am all alone in life so the county set me up with home and nursing care. I have chosen to have a DNR at this point because things are so painful and overwhelming. My neurologist won't treat me anymore and wants me to go to Mayo to inquire about a vagus nerve stimulator. Unfortunately, the transportation is likely impossible. So, there you go...the story of me and I will definitely look up that support group.