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