HEy there,

I dont have CRPS where you do or even as bad as you do from the sounds of it. But I do have IC!! I have had it for almost 10 years and i had it before I was diagnosed with CRPS. IC from what my gyn says follows people with Endometriosis also and i never put the connection of IC with CRPS, bc it does feel the same. I also never heard it called a form of RSD and Im very intrested in this bc maybe i was always suseptible to RSD then...??? I have bouts of remission with my IC and right now i am n a flare! I totally know what that pain feels like and it feels like your whole pelvic area is on fire adn there is NOTHING to relieve it and for get going to the bathroom!!

If ya need to talk , Jut Private message me anytime!!

HUGS
AMber

thank you everyone for the lovely welcome and your great replies which all contributed something for me to think about. really nice to have a response out there and so quickly!
sorry you are in a flare amber - really hope that the IC pain does quieten down again soon for you. it is interesting that you have crps elsewhere, which does make one wonder about the possible nervous system irritation linking the two but it sounds as though the ic for you may have a local inflammatory element that somehow rises and falls.

i am really interested in ada's reply and haven't heard the term pelvic congestion syndrome. i don't really have any gyny synmptoms and had a clear laparoscopy - not sure if you have more probs along these lines than me. going to look up about PCS! think sometimes all these syndromes have so many overlaps and may consist of mixture of overlapping processes in different proportions?! no-one has ever suggested trigger point or other local injections apart from the nerve blocks. i had lidocaine in my bladder in the past and an iv lidocaine both of which didn't help but i have never heard or tried the patches and will try and ask my pain specialist. glad you haven't gone through unnecessary trauma of bladder removal etc but i feel for me it as least made me know it was phantom and at least now i know i just feel i need to go and don't actually rush to the bathroom, giving me more confidence in that respect when out etc., but painwise and sensation wise a waste of time! what is an IR Ada (sorry if being obtuse!)

Ali - you seem so young which seems so unfair that you have so much pain to live with. i was 18 when my life was taken over by pain (am now 29) and that felt young and like i was missing out on key growing up things. do hope you get some young stuff in! you write so mature and seem so knowledgeable so cheers for the ketamine coma links. my MPhil ( that i am having to break from) is/was looking at both the diagnostic and communication problems of chronic pain in terms of western medical philosophy for the patient experiencing it, but i was also looking at chronic pain in 11-17 yr olds particularly. i work with a professor of children's nursing called bernie carter and she has written some lovely stuff on nursing children and young people with chronic pain and really fights for young people to be listened to and respected. if i get back to a btter place with the research you may be a great person to include to tell your story and how it has affected your life - which was a element of the whole project set against the theoretical background of pain as medical problem but also deeply human experience and agony. anyway thought you'd like to know some of that if it makes sense at all!

sandra also thanks for your lovely words and sorry you have such bodywide symptoms. kind of reassurig for me but obviousbly awful that you have some of these visceral sensations. everyone seems to experience it differently. i don't have squeezing sensation fortunately, just burning and only really my stomach somtimes burns a bit and my GI tract, the pelvic pain goes up into the kidney area but again i don't seem to get the sensation in the way you describe. however is still showing the visceral sensation can be altered! i think you analysis of my situation may be accurate - i don't know much about the relaionship between phantom pain and crps exactly, but the bladder pain seems to have triggered bothe sensory, autonomic and mild motor (twitches and jerks) effects. damage to the nervous system does seem to be often an enigma. i just hoped that phantom pain may subside but it hasn't at all.

again thank you all for your overwhelming support and kindness. lots of love to you all in your various situations
sarah

IR stands for Interventional Radiologist. This is who treats PCS.

When we have several things going on it's hard for the Drs. to separate what is what. I actually got diagnosed with the PCS about 2 years ago but we were busy dealing with other medical issues. Now it has gotten so bad that we are trying to get help to get it calmed down. My Gyno did call today and I go in tomorrow at 2. He is such a good Gyno and so much fun but I have my doubts about him knowing about the PCS. If not, my PCP said he'd take care of me until we found a Dr. that could help with it. Co. has some of the worse Drs. Here you have to see several to find one good one for what is going on.

I have had the TPI's for the IC also. After going to my Urologist for 2 years and not getting better my PCP started reading up on it and trying to help me with it.

Feel free to PM me with any questions about any of this. I don't have any Gyno problems, the PCS is where the blood is not flowing right to the heart and it backs up in the pelvic area, thus causing more pelvic pain. I also use a heating pad at night. I will put a patch on my pelvic area and then also use a heating pad. Everything I do I run by my Dr. so I know it's ok.

Hope this helps and feel free to PM me.

Ada

Hello Sarah,
Nice to meet you
I just want to tell you that here in Australia we treat Intersticial Cystitis with ketamine infusions. Not the coma treatment but the sub-coma inpatient type.
There are quite a few sites online to discuss the efficacy of these. I do hope that you will be able to get some relief soon.
Love Tayla

thanks tayla that is really interesting. i will try and find out about that - has not come up on my various searches but will look for it specifically now! i have oral ketamine solution but obviousbly much weaker than the iv either subanaesthetic or at coma level doses. i am sure that interstitial cystitis as an umbrella term has a population with the same neurological dysfunction and changed processes as other disorders like crps so the treatments may ultimatelt help a lot of pain now classified under various 'syndromes'. i wish the focus was on processes not categories!
i am corresponding with dr schwartzman's pain nurse specialist and hoping to make an appointment to go over to see him for initial assessment with a view to the full coma treatment. in the meantime i am trying to find out as much as i can about what is going on and the neurophysiology of this kind of pain.

many thanks, take care,
sarah

I would like to help but, of course, it's impossible. You have my best wishes.

I do get repeated bouts of diverticulitis which involve significant pain in the lower left quadrant of the abdomen. This pain has caused the RSD pain to move to this area as well so I don't know the diverticulosis is flaring up until it's starting to get serious.

I'm afraid to get the bowel resectioned because of the RSD.