i am a new memebr and just wrote a bit on my extended biography which i thought kind of makde a link with your son's case. i too must enter into the diagnosis debate in terms of viscera and crps - thing is rsd/crps is still so unknown about and knew things and connections will be found and many of the processes may be the closest way to deacribe pain labelled under a variety of syndromes - there may be variants of complex regional pain syndrome.

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 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. am desperate and seeking info also on the ketamine comas trials and trying to seek advice from experts in america. Nearly 12 years on and with all the determination to get a first class degree and MPhil studentship afer years house and 'bathroom' bound (pre-bladder removal) and 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 also 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.

i hope that something works for your son and you get some compassionate and openminded support from doctors.
bestest wishes,
SarahB