Well.. It appears where I live, that the medical system does not have any knowledge with CRPS :-\ My partner had to do alot of research and find out the best ways it was treated etc. Armed with all the info he went to see my doctor and he had agreed to refer me to a hospital in Bath that had a Pain Management Programme that I would be suitable for. So we waited for the letter to come after being told he would have to apply for funding as it is miles away from where we lived. Six months later my partner decided to ring the doctor and find out if he had heard anything.. Only to be told he hadn’t done the referal!! What the heck was he playing at!! He decided to say that we hadn’t really agreed to it and he was getting me an appointment at my local hospital to see a pain specialist.. I cried for hours! My best chance of any remission had gone all at the hands of 1 doctor. There were other things that he had said he would do but didn’t.. So a complaint about him went to NHS England. He had edited and changed my notes months after the actual date they were made! The best chances of having any remission with CRPS occurs only within the first 3 months. People with CRPS type 1 have a better chance of remission then CRPS type 2. As type 2 is definitive damage whereas CRPS type 1 isnt.
I had to change doctor and my partner did more research again. There was a CRPS Specialist in Liverpool! I HAD to see him, so a referral was made and I was accepted within a month!! YES!! Result. We took the awful trip miles and miles to Liverpool. I was laid across the back seat with pillows at the other end to elevate my foot the whole way.. Needless to say once we got there and was seen by Dr Goebel, my foot was presented to him in a rainbow of colours and twice the normal size. He prescribed me Lidocaine patches to try to stop the skin being hypersensitive and pregabalin to take alongside my morphine, dumoxetine, amitriptyline and cocodamol 30/500. If I could jump I was sure I would rattle!
Well the patches were a no go, they burned my skin and they was no where near the affected site, after a quick email to Dr Goebel I was told to stop using them. Then the Pregabalin… Oh not if I knew what would happen I would have NEVER taken it.. I was a small 11 stone woman before Pregabalin… 6 months after I was 14 stone!! It was awful, but no matter how many emails I sent I had to stay on it and then be weaned off after a year. My weight has never gone back to what it was.
Dr Goebel wanted to see me after a year.. So we took the trip again, this time was even worse as the CRPS had spread up the leg to my hip and they wouldn’t provide an ambulance for me so in the back of the car it was… It was awful I was taking morphine all the way! We were messed about once at the hospital as the department had moved, so they did a pain management programme with me to see if I could go on the course they was doing… After my assessment I was told no, I was not suitable for their programme as my CRPS was aggressive and had spread faster than they had seen. Dr Goebel came to see me told me to stop taking the Pregabalin.. So I asked what I could try next and his words will haunt me forever.. ” There is nothing any further anyone can do you for” that was the day my life ended… I had no reason to live.. I had no purpose in life. Not one specialist in the whole of UK wanted to touch me or treat me. Rather than use me as a Guinea pig, they decided to shun me! I could have been used to help others, to help specialists learn how the spread works and try to find out why it happened to fast! But no .. Nothing.. Left to rot. No physio, no psychologist, no psychiatrist, NOTHING!
Two weeks after seeing Dr Goebel I became permanently bedbound, no future, no life, no independence, no privacy, everything was taken away, my heart was ripped out and replaced with stone. I might as well be dead. Animals with less pain than this get euthanised, we don’t have the pleasure of making that choice for ourselves.