BLADDER ISSUES WITH CRPS

[@christytschappat2592]

Thank you for making these videos. This is a very lonely path I’m taking and it’s nice to know there are others with the same condition.

[@TheCRPSNetwork]

Christy...aweeee thank you. You're never alone ;-)

[@sandytellman2136]

Yes I definitely have that problem BigTime...thank you for the info.......

[@lorahargrove9710]

It's the challenge thanks for sharing

[@sharonbrown5702]

Hi great vlog i keep have to wee and have crps in my left arm I am going to the gp on 30 I live in London so glad I found your vlog keep up the great vlog xxx

[@TheCRPSNetwork]

Sharon, thank you for the kind words!

[@andreacagle208]

This is definitely one of my CRPS symptoms. Before I found out this was part of CRPS I had an OBGyn convince me I needed a bladder sling. I had that surgery and believe it or not, the problem was exactly the same. I was crushed. I was put on oxybutin and it helped at first but slowly stopped being effective for me. It was only after my sling fell apart and I had to have a second surgery, and now had to have a second sling put in because of the damage done to the surrounding area by the first sling, did I find out this was part of my CRPS. I would never have had the surgery if I knew that. I now have pretty bad incontinence and use no medication. But I read that flowmax could be an option for us, because even though it’s primary use is male urinary issues due to prostate problems, it has been found to help those with neurogenic bladder, so it is now being offered to female patients with neurological issue and bladder dysfunction. I would like to try it if I can get it authorized.

[@juliebaxter7501]

I have had issues sometimes with my bladder not all the time, not sure if it's CRPS or just getting older LOL. I have found once it was due to a medication I was trying and once I stopped the meds it was much better. Now I do Kegels everyday to help

[@genericamerican7574]

So very true.

[@tammiel3812]

I have two spinal cord stimulators now as of November 2021. I was diagnosed with two opposing symptoms-not filling completely and urgency. The two fight against each other! The Botox was the trick hands down!

[@jeanninegunn5412]

So true for me. Some days it seems like a total brain bladder disconnect.My brain just doesn’t let me know. There’s been times and esp at night I get intense bladder spasms so painful it keeps me awake and up and down for hours. I think the pain is possibly worse at night because the AM 20 mg extended release OxyContin has warn off, so I’m already in allot of pain struggling to fall asleep 🔥 I try hard to finally fall asleep with out having to take more drugs. My Dr prescribes Dilaudid for breakthrough pain. With the spasms I have an urgent urge to go but release very little urine at a time. Those nights are absolute torture 🔥 CRPS pain makes my private parts feel electrocuted 🔥 The best way to describe it is it’s like I’m being tortured” My doctor recently prescribed a small amount of Valium to have on hand, I found it helps to calm things down enough for me to fall asleep 😴 💤

[@lfitz3411]

Richard Rothstein Lori's husband...definitely have lots of trouble with my bladder...I drink river fulls of water (per my CRPS specialist) and also have an enlarged prostate (68 years old) so I have double the problem....almost always have to pee and urination frequently hurts near the end when I've seemingly voided all the liquid but I haven't so incontinence is a small issue now.

[@jilldecker6257]

I have absolutely no sleep lucky if I get 3 hrs.. I am at a lost.

[@GooNiESNeVeRDiE]

Same here

[@sandytellman6138]

I have had botox injections and they do work. I get them every 3 mo. I do have to wear adult underwear because of leakage and or accidents. Which usually happens at nite. I am also on the medication Desmopressin.

[@Saffy1999]

Having just been tested for Bladder Cancer (it was clear) … and the Urologist saying it was “Overactive Bladder” and just giving me a leaflet …. I went for an ultrasound on my bladder and kidneys. She got me to go and pee and then did the ultrasound again on my bladder and there was 3 times as much urine as they like to see, inside me. Am calling the Doctor on MOnday to see what he advised.

[@rontegtmeyer8293]

Your doing well Now seems their may be some think more going on best to have it checked CRPS causes all kind of health problems it can be endless best to be safe 👌😞😉😝

[@hope4all366]

I have CRPS and IC. I know I have IC. Mine is not overactive bladder.

[@daveysodyssey9990]

I have CRPS and I am having urine retention I can’t go without a catheter

[@susanpreciose665]

Mostly my bathroom running is all night; but I been diagnosed with neurogenic bladder, crps, Emory urology **, catheterization 3 x’s day, but I also experience burning, 😂like my arms, 🔥and it's painful, uncomfortable too very!! Azzo, is messy!! But, it doesn't rid it all? Anyone else get the burning? Pressure, I may go 16x’s a night.. sphincter muscle is very tight I don’t think all right

[@susanpreciose665]

Anyone experience the burning? And what helped?

[@jodil7918]

I was electrically shocked in 2017 now I've developed CRPS I've been having bladder problems for over a year they keep telling me it's not from my accident I'm on my 9th UTI in one year nobody will help me

[@TheCRPSNetwork]

Jodi...wow, first of all you are the first person I've heard of that got CRPS from being shocked....although I know that it is very possible. Yes...I kept thinking I had UTI;s too....I kept arguing with my dr because all the test would come back negative, but I would say....uhhh, no really I have one though...haha.

[@Sheywh12]

I’ve had RSD for 21 years and have had incontinence for about 10 years Didn’t know they were related How Do you find a kidney doctor that knows about RSD I’ve been to a doctor and I was fine according to them?

[@TheCRPSNetwork]

Hi! Yes it seems like the bladder is one of the first organs that become affected with crps. I was extremely lucky to find a urologist who was familiar with crps on my first visit. I sometimes call around and ask before seeing doctors if they do know it. Sometimes it’s just trial and error.

[@andreacagle208]

Where do you live? I am collecting info on different related disabilities and I provide them to my specialist in LA. He treats only CRPS patients. I take him anything I find and he checks it out for validating purpose but it also keeps him widening his knowledge and education because it’s doctors like him and your urologist who are doing what little is being done to figure out how to treat us.