Does your diagnosis really matter? (continued)

"A couple of days after the Guanethidine my arm and hand were warm - the first time for ages. The pain was not so bad, which is why I had more courses in the hope that it would work permanently. Then I had the Stellate Ganglion Block but, because they were so honest about the procedure, I chickened out on the way to theatre first time around. I trusted the surgeon but I was scared. Next time I made it all the way though the doors and into theatre. I was awake during this procedure, as it can affect the heart. The needle actually goes into the neck, just by the adams apple. They aim towards the spine, go slightly left and down at an angle. They have to use the better arteries and veins, I was told, which is why I chickened out the first time. After this treatment I expected the pain to go away. It took the edge of it, but only for a week at best. So then I had the biggy. In theory if the blocks worked then cutting the nerve would certainly stop the pain. Sympathectomy? Good idea, I thought! Well apart from a six inch scar across my throat that herman monster would be proud of , my pain did reduce. But within three weeks of the operation I was asking the surgeon if the nerve could have reconnected itself. My chain of thought was, if the pain would go or just be bearable that would give me a new life. I thought that if the pain was less it would make life more bearable and every day would be easier to handle."

"Eighteen months after the Thoracic Decompression and Surgical Sympathectomy (right side), I still have a lot of pain. Also, the scar where they operated and down past my boob is still painful. Above my boob the skin is still puffy and red, like a blood stain or a dirty mark under the skin. As for the right boob, it is getting more and more tender. I know muscles take time to heal and I was told before the operation that it takes a good year before I would notice any improvement. But the only difference so far is that I have pain somewhere I never felt it before."

"Over the years l have taken all sorts of drugs. I can't take to the Morphine based ones, but have used Lofepramine, Dihydrocodiene, DHC, Solpadol, Diclofennac and Amytripeline. DHC and Dihydrocdiene are mainly pain killers and are really the same but DHC is supposed to be longer acting. Amytripeline is an anti-depressant which I don't take so often now as it makes me dopey rather than sleepy. The only thing that has made a major difference to my life so far is the occupational therapy."

So you see, a diagnosis of RSD or CRPS does not cure the problem. This is not a condition where a choice of well-proven treatments is lined up on every pharmacist's shelf. It is a poorly understood syndrome, which produces symptoms the 'ought not to happen' according to basic theories about nerves and pain that are taught in medical school. So, if it doesn't point to an obvious treatment, surely the diagnosis doesn't matter?
You try telling Sharon that!