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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Problems with the bladder?

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Unread 09-14-2009, 07:06 AM   #1
alaska49
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Default Problems with the bladder?

I wanted to ask if anyones else has problems with their bladder shutting down or retaining?

My RSD is full body and internal so having issue with my bladder isnt new. Whenever I go into a flair if I dont get to the ER quickly my bladder shuts down, thats what happened yesterday. What my doctor says happens is the signals from the bladder to the brain dont reach each other which leaves me with the inabilitly to use the bathroom. Sometimes when this happens if I am given 150-200mg of IV demerol within an hour my bladder returns but sometimes it doesnt and this time it didnt. Does anyone have any ideas to try and get it to start working again. The ER left the fully in until it returns, I just dont know how and when as sometimes it last up to 2 weeks, so if there is something else I could try I would like to.
Thanks!

Niki
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Unread 09-14-2009, 09:27 AM   #2
dreambeliever128
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Default Hi Niki,

I would go to a Urologist about this. As someone said yesterday, we can't chalk everything up to RSD.

I have Interstital Cystitis and spent years getting the pain to calm down. I also saw a new pain specialist last year that had to stretch my uthera because he said it was the size of a 7 year old. It did help with me losing more urine when I went to the bathroom but not with how many times I go which is way to many and the pain.

It seems that a lot of times with RSD we do come up with more things going on along with it that is not connected to it.

Ada
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Unread 09-14-2009, 09:50 AM   #3
alaska49
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In the past year I did see a urologist at the Cleveland Clinic, she told me it was the RSD and that she has many patients having the same issue due to RSD but she didnt give any ideas on how to manage it when it shuts down. It just gets so fusturating and wish there was more I could be doing to keep it running. Next time I go into a flair I will just go straight to the ER, I have told myself this before, if I dont listen to my body when it screams ER now then I end up paying for it. I am going to call my doctor and see what he says, I am doing the ketamine infusions every week and I am hoping when I have my treatment it will help get things back on track.

Niki
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Unread 09-14-2009, 10:22 AM   #4
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Dear Niki.... I hate to be the bearer of negative tidings...but the ketamine may be a factor with your bladder:

http://en.wikipedia.org/wiki/Ketamine

Quote:
A study in Bristol reported in the British Medical Journal on 3 May 2008 linked urinary tract disease with ketamine use. Symptoms reported by users include an increased need to urinate, passing blood in urine, leakage of urine and pain on urination. These symptoms are associated with the scarification of the bladder lining, which leads to a shrunken bladder, erythema, and contact bleeding, and can then move to the ureters and damage the kidneys.[77][citation needed] In a study of 9 daily ketamine users, Shahani et al. found "marked thickening of the bladder wall, a small capacity, and perivesicular stranding, consistent with severe inflammation. At cystoscopy, all patients had severe ulcerative cystitis. Biopsies in 4 patients revealed epithelial denudation and inflammation with a mild eosinophilic infiltrate. Cessation of ketamine use, with the addition of pentosan polysulfate, appeared to provide some symptomatic relief.
This also...
http://www.ketaminebladdersyndrome.com/KBS/Welcome.html

on RSD and the bladder:
http://74.125.95.132/search?q=cache:...&ct=clnk&gl=us
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Unread 09-14-2009, 11:23 AM   #5
alaska49
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Thanks for the info, I will look into everything and ask my doctor. I dont think the ketamine is the reason my bladder is the way it is as my bladder was like this 2 years before starting the ketamine. I have been doing the ketamine now for 8 months and the bladder thing has only happened twice since then but each time was from a flair, before the ketamine my bladder shut down about 8 times in the 2 years, everytime it shuts down is when my pain is at its all time high.

I am going to ask my doctor about all this though just to make sure its not going to make things worse. I really cant stop the infusions because without them my life becomes unlivable, without the ketamine I am in ER's every 2-3 days but with it its only like every 2 weeks which for me is really good. I have failed every other treatment so I will cross my fingers the ketamine isnt making things worse cause I really dont know what I would do without it.

Niki
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Unread 09-14-2009, 11:41 AM   #6
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Default Hi Niki,

I would try another Urologist. I went to the U of Co. hospital several times before I figured out that I was a guinea pig to them and have went to 3 Urologist around here. Two in the same office, I liked the second one and still go to him. Then the one I saw last year was a Pelvic Pain Specialist so sometimes you have to find that right one that can diagnose you and help you. As far as chalking things up to the RSD that does happen a lot with some Drs. I learned a long time ago that we know our bodies best and the Drs. tend to chalk it up to what they want to if they don't know what is going on.

Also, when you are in so much pain from the RSD, then it's very hard to distinguish between what is going on in other areas until the RSD pain is calmed down some. I hope the Ketamine works for you. It is possible that it is making your problem worse even if it didn't cause it.

My system started shutting down last year. I couldn't go to the bathroom. I was constipated and backed all the way up to my breastbone. I have since been put on Mitformin to help with getting it working again. My Dr. thinks it was from some of the meds I took. I think it was the Lyrica. It did a job on me. Sometimes the meds do make matters worse.

I hope you find some answers soon.

Ada
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Unread 09-14-2009, 12:20 PM   #7
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Default I have to agree with Mrs. D perhaps the ketamine

Niki, as you know I was on ketamine for a very long time , every two months up to the coma and then the whole start up agian, two weeks, monthly then back to my monthly schedule for a week. This went on from 2005 until 2008. I was hospitalized on three major occasions to get 10 pounds then 13 pounds of fluid either out of my legs or off my back. Yes it was edema, but my bladder was not working either. now that i do not have the infusions, my edema has decreased, I do however take a water pill to encourge my bladder to empty other wise I would have major problems still. It is HCL- it blocks calcium to the kidneys. Now unfortunately when I go in - i'm there for a half hour, but i have no feeling of my bladder emptying. Just the urge to go, I do belivie it is from years of ketamine infusions. but i dont know for sure.cz
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Unread 09-14-2009, 05:51 PM   #8
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Hi Niki

In Feburary I went to a Urologist for my bladder. I was concerned if it was my RSD causing problems. I insisted he call Dr. S in Philly. On my last visit to Dr. S he talked about how if affects the bladder. I insisted my urologist call him and I followed up with my local doctor to to make sure he called. Dr. S gave him advice on how to handle my condition. Mrs. D has listed some articles and I haven't read them yet they may be the ones my doctor told me about that Dr. S had written. Dr. S is one of the few doctors I know of that has dedicated his medical career to researching RSD/CRPS. His research is done around the use of ketamine. He would know it's effects on the bladder.
Take care,
Sherrie
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Unread 09-14-2009, 07:03 PM   #9
alaska49
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I want to Thank everyone again for all the advice and help I so appreciate it.

My doctor I see is Dr Getson he is actually a collegue of Dr S, he was with DR S when he first started doing the ketamine then branched out to his own office but still talks with Dr S nearly everyday. The info my doctor gave me on the bladder not only came from his experience and oppinions but also Dr Schwartzmans. With my RSD becoming more and more complicated Getson has been talking with Dr S and they have been coming up with treatment ideas for me. I am going to talk with my doc on whats going on again and see what he thinks I should do. I may try going back to the ER as when the pain and nerves are under control is when my bladder returns and sadly the only thing that I can take and that helps is IV demerol at high doses, luckily the whole ER staff knows me and how to help me. If I need to go to another urologist my doctor will know who to go to, he has contacts in every kind of specialty but they also know of RSD which helps. I am just getting so fusturating all this keeps happening, its just not fair at age 21 I feel like I am in my 90's.
I really hope the ketamine isnt causing this to get worse, I really dont know what I will do without it I dont want to have to be going back into the ER and hospitals every 2-3 days.

Thank you all again!
Hugs to All

Niki
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Unread 09-14-2009, 07:40 PM   #10
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hey nikki

i also have internal RSD for many years and i also have interstitial cystitis like ada mention and what your explaining is basicly what i go through not a complete shut down but i dont have any contractions of the bladder and get horrible kidney infections and for no appart reasons. no long term kidney damage. i have been doin on and off for a couple years almost a block type thing for the bladder when they inject meds into it via cath. and this does help. not long term at all. but does help. i would look for a urologist that specializes in female issues as IC manily only effects woman


pm me anytime

carrie
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