i have continually had the problem of being hard to classify because my pain began with a UTI, but seemed to evolve into a kind of centralised neuropathic pain with autonomic disturbance. i have been diagnosed in america with a kind of crps but have never met anyone with the same kind of past story to me. I now have no bladder and a bag but have phantom bladder urgency continually still as well as deep searing burning pain where my bladder was, in my lower back, across my buttocks and pelvis.

other areas of my body also burn but I my lower legs and feet are like they are in ice all the time and thermography showed they were very cold. i get jerks and twitches in my lower legs. i have burning, mottled palms, poor temperature control and sweating in general, pain and soreness of my face and scalp and am exhausted from being too uncomfortable to sleep! i get a lot of headaches and tingling and have sensory changes which feel both numb and hypersensitive in my lower legs. i have tried almost every drug i think and have had endless nerve blocks to no avail and a failed attempt to relieve pain with a spinal cord stimulator. have sought help from doctors here and in florida in the past. have tried endless alternative therapies and as a herbalist use herbs to support but they don't relieve the level of pain.

Nearly 12 years on and with all the determination to get a first class degree by studying in bed in agony with heat packs and achieving an MPhil studentship afer years house and 'bathroom' bound (pre-bladder removal), I feel I am worse if anything and don't know how to bear each minute and continue a life with the pain and lack of ever having respite. i feel really isolated in terms of my symptom profile and my symptoms may be seen as a kind of interstitial cystitis by some except there is no organ and the centralised changes are obvious. I know there are some suggestions that some kinds of interstitial cystitis are a form of CRPS. to an extent i don't care but it just makes me more lonely and would love to here if anyone has this kind of burning in their trunk, back, viscera or similarities with my story to share. i have been so positive and independnet the last few years trying to ignore and distract from the pain but it just isn't sustainable for me anymore and i don't know how to go on making so much mental effort etc to simply endure more pain despite all i cherish and love. i am terrified what is going to happen to me as each day feels so hard and i can cope with and do less and less as the pain and various symptoms all over seem to worsen.

does anyone know anythinga bout ketamine coma trials and if anyone from the Uk has gone trhough it as a patient. i am trying to find out via the experts in america and see if i could be evaluated. i seem to have come to an absolute stalemate with the drug and other options that the pain specialists here have been able to offer me. also anyone who has heard of visceral connections and a link between interstitial cystitis (IC) and crps/rsd i would love to hear.

many thanks, best wishes to everyone
sarahB

Hi Sarah..
Welcome to Neuro Talk though I am sory you are herein such curcumstances, it sounds to me that you probibly have much to teach us my new friend as the information on truncial CRPS is very sparse I found. It's very nice to have you here amongst us welcome an if I can help in any way just ask.

My RSD didn't origionaly start in my torso but I get alot of pain and problems from my kidney area that comes and goes, I find when it's bad I cant rest my back against anything without it intensifying the pain.. vibrations will do it too bumps on the road if I am on the scooter or on a bus it sets it off nasty some days. I have full body systemic or generalized crps.. not sure what that means either but my organs feel like someone is trying to squese or pluckem.

It almost seems that you have a form of phantom type pain along with the systemic or full body CRPS, I realy admire what you are doing with your schooling very much.. I found that very inspiring and I would love to hear more about what you have acomplished over the years.

I am sory you feel so alone Sarah.. you are not now you are amoung friends here.. a shoulder or an ear.. or just some empathy you have come to the right place. research or exchanging experiences or just a you are welcome here.


Sandra

Hello,
Welcome to Neurotalk, I am so sorry about what you are going through ((hugs))

Please let me introduce myself:
My name is Alison, I am 12 years old and I suffer from RSD in my left leg and right arm. I first developed RSD in my leg on the 16th March 2007 after an ankle sprain. After 4 months of physiotherapists telling me to stop imagining the pain, I was diagnosed with RSD, I felt as though my life had just ended. Immediatley after diagnosis my PM doctor performed a "Guanethidine nerve block", which caused me to lose my balance (I can't walk my leg shoots out in front of me)
2 months later my PM doctor prescribed me "Amitriptyline" to try and help me sleep but I suffered from a nasty side effect of "blurred vision", this resulted in a knock to my right arm. My arm began to swell, I got the burning pain, colour changes etc. 2 weeks later, I was diagnosed with RSD in my arm. The RSD in my arm has been into remission, but the RSD keeps flaring up when the weather is cold etc.

I have not had the Ketamine coma treatment but I do live in the UK. These are links about the coma's:
http://www.youtube.com/watch?v=n5aVCJ8-Ahw
http://www.mapinc.org/tlcnews/v05/n1371/a03.htm?158

If you need anything just ask, I know how hard coping with CRPS/RSD is.
Thanks and take care

I have RSDS in my pelvic area along with Interstital Cystitis, and now something called Pelvic Congestion Syndrome.

I went to an Interventional Radiologist last week in hopes that he could help with the PCS but he knew nothing about it. It's pretty rare I guess. My PCP gives me triggerpoint injections around my pelvic area and has also done injections inside of me. They did help for awhile. We are going to start them again this week. Also he is talking about putting me in PT for the pelvic pain. I also have an appt. the 12th with my Gyno in hopes he knows what to do about the PCS. I like him but he doesn't keep up on learning like my PCP does.

I had several surgeries that has brought on my RSD due to not being able to get blocks at the hospital I had them done in.

Back a few years ago I had asked about having my bladder taken out. The Urolgist said they do it now for IC. My PCP changed my mind. He said it wouldn't help.

My PCP told me last week to come home and read up on the treatments for PCS and see if I want them. He already knew what they were though. The PT and the triggerpoint injections until we can find an IR or someone who knows something about it.

As far as the IC, mine got no better with treatments. I was using lidocaine that I put in my bladder but it made me so much worse. They tried other meds in me and they made me worse so we quit the treatment.

I use lidocaine patches on my pelvic area also. You might want to try them. You can put 3 on for 12 hours on and 12 off. They do seem to help some.

I have gotten worse in the past few months. I am now dealing with headaches, chest pain, nausea, and other symptoms. I don't know if they go with the pelvic pain but I seem to get them when I am at my worst. But with the PCS the blood doesn't flow right from the heart so I am thinking that might be causing some of these symptoms.

I am sorry that you are going through so much. I am amazed at what you have accomplished though even though you are so sick and in pain. You have a lot of strength in you, that's for sure.

I hope you start finding some relief soon and I hope you stick around too.

Ada

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.