Incontinence and pain in hands?

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.

@itiswhatitis

This is a complex issue. It must be frustrating to have lived with this for so many years. I'm tagging @johnbishop, who is the mentor in the Neuropathy support group. Perhaps he can connect you with another member, or discussion that might be helpful to you.

@itiswhatitis Hopefully you saw my response to the new discussion you started in the Neuropathy group. Here is the link - https://connect.mayoclinic.org/comment/1406439/

I wanted to follow up on this post. Once my UTI was fully treated by a urologist, the pain in my hands and arms went away and all of my symptoms resolved. My theory is that it may be inflammation or nerve related. Also, a friend of mine who has serious, recurrent UTIs due to a severe immune deficiency (and has been septic more than once) urged me to keep pushing for it to be fully treated and not accept an interstitial cystitis diagnosis without proof that the bacteria was gone and urinalysis was completely normal after the antibiotics were out of my system. She mentioned that there is some new research showing that first morning urine is more likely to show the infection. I am now also on vaginal estrogen, which seems to help, although I just had another UTI (first in more than a year and half), but I think it was because I tried reducing how often I applied the estrogen cream).

I also have pain in my hands when i urinate, really hurts and extends to my elbows. I have to clasp my hands for relief until it goes away. it is getting very painful. Dr. did not say anything. just shrugged, should I see a urologist. Do not have uti, I'm 91 so I know some things come with age, am in good health, go dancing twice a week, stay active, remarried 2 yrs ago. Guess I will live with it and wear my pullups, lol

Hello @mlh2023 and welcome to Mayo Clinic Connect,

You are wondering if you should see a urologist. If your current medical team is not able to help you, it is always your right to seek a second opinion.

Are you currently being treated by your PCP? If so, feel free to ask for a referral to a specialist.
I look forward to hearing from you again. Will you post again and let me know how you are doing with his process?

I am in an incontinence study at Dartmouth Hitchcock where I got Botox injected into my bladder. Since that time, approximately two months, when I have a narrow stream of urine I get nerve sensations in my hands. The doctor looked at me like I was crazy. It's happened dozens of times now, and at 71 it has never happened before in my life. She did a UTI test and it was negative. I'm so glad to find other folks for whom this has happened because I know there is no direct nerve connection between the hands and the urethra. I do have fibromyalgia and I'm wondering if that might be responsible.

OMG, I thought it was only me since I couldn’t find any info online and my Drs, looked at me wired, like im crazy.I’m in menopause and I have the same sensation now like radiating pain on arms and run tru my fingers , this is the second time it happened in 2 years and that’s how I find out that I have UTI , no burning or pain while urinating except this sensation on arms, I describe it as strong. I just started antibiotics, but several Doctors tell me this is the first time they hear this.🧐 olso I have a kind of pelvic slightly pain /pressure on my pelvic, I had a pelvic ultrasound and everything it’s ok,Doctors blamed it on my hormonal changes 🧐
I went to conclusion that it might be nerve issues with me since I have another strange odd symptom 🙃while I just enter officially to menopause, I have a tingling sensation on the outer left upper lavial /vagina that is so annoying, is like literally tingling/ vibrating and is been on and off for the last 2 years,
So my next step is going to neuropathy doctor.
I read somewhere it’s a spine pinch nerve that get corrected with physical therapy or surgery.
My menopause it’s driving me crazy, so many unheard symptoms 🙁
Does anyone experiencing those symptoms?

I have this right now and I’ve had it for years. I have fibromyalgia, MS, fibroids and maybe endometriosis. When I have any hint of uti symptoms my hands hurt first. All of my fingers but most noticeable on my right hand on thumb, middle and pointer digits. I don’t have any answers I’ve told a dozen doctors and they all look at me like I’m crazy. At least my rheumatologist wrote it down in my notes. Everyone else just rolls their eyes and moves onto the next thing on the checklist.