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

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

Hi Niki
I started getting bladder symptoms due to inflamation I think, as soon as the RSD spread up my legs.. I was able to time the dificult times urinating at first to the swelling in my legs, and when my legs were in flare my lower organs seemed to be effected as well, if my legs swelled badly my bladder seems to as well and I would find it painfully dificult to force the urine out.. after sleeping the night through in my hospital bed with legs elevated the inflamation is reduced, but as a direct reaction to the swelling when it does go down I find I have very little bladder controll in at all in the AM.. till I get up and start moving around alot (perhaps till the swelling starts again ).

I am not getting ketamine treatments, I get subcutanious lidocaine infusions and recomend them if it turns out you need to change meds, I personly think that this would be the next best treatment choice and safer then ketamine can be from what I have heard.

Sandra

I have interstitial cystitis too, and was diagnosed with it 13 years ago after 2 frustrating years of trying to find someone who knew what was wrong with me. I was diagnosed with RSD 2 years ago, and one of the PM docs I saw told me that RSD has recently been found to be RSD of the bladder. He said that becasue I already had IC, I could have been predisposed to RSD, and that could be why I developed it after my surgery. I am able to manage my IC with diet, but I have found that the Neurontin that I take for RSD does help with my IC pain. It does nothing for the urgency and difficulty getting my bladder to work when I want it to, but the pain relief is nice.

Sorry I don't have any solutions for you, but I agree that you need to find a good urologist. Good luck!!

They now put Lidocaine in the bladder to help with IC.

My Urologist gave me the med to use at home to put in my bladder. I also get Lidocaine shots for the bladder pain.

There are certain Urologist that deal with IC so when calling one you might want to ask if the do specialize in it.

Ada

Like some of the others, I also have IC (interstitial cystitis). I have RSD in my pelvis and legs and have noticed when my IC flares, it triggers an RSD flare and vice versa.

(*** I had IC previous to the RSD/CRPS in my pelvis, like the previous poster, although it took me years to find a dr who correctly diagnosed my bladder issues as IC*** )

One of the things that have really helped me is starting a medicine called Elmiron. Its a new medication that is used for IC and helps reduce bladder inflamation, spasms, and the pain. Elmiron has been a Godsend for me. I went from going to the bathroom constantly-- and having the "urge" to go (-- even though I couldn't always physically "go" ) and pain from the spasms to being a lot more comfortable. It might be something to ask your Gyn or urologist about.

Like one of the other posters mentioned, I too use a Lidocaine jelly (prescription) in my bladder and Vaginal areas when needed and especially during my flares. It doesn't exactly help the pain, but it eases a lot of the burning sensations and numbs the areas so I am a lot more comfortable going to the bathroom and after I go. Something to ask your doctor about.

Other common medications for it are some of the anti seizure meds and other anti depressant medications (Neurontin, Elavil, Pamelor, Lyrica, etc)-- which are also used for nerve pain. They never helped my "crampy" and frequency, but they do help the nerve pain (I am currently on Neurontin and Elavil for RSD).

I know it isn't easy, but remember you DO have options. Talk to a good URO-Gyn (a dr that specializes in womens pelvic pain and bladder issues--- sometimes they are certified in Gynecology, sometimes Urology) and see what your options are. Hang in there and don't give up !

L2L