Paula - exhausted is an understatement :( I'm turning into a ghost - my face is so pale than mum hovers when I get up because she is so sure that I'm going to fall over.
My PM doctor I think was shocked. I don't think he's seen me this bad for a couple of years :( We've decided to try a stellate ganglion block, which will knock out the sympathetic nerve supply to my right arm and hopefully reduce the pain in my arm. I'm not confident that it will work - sympathetic blocks are usually most effective early on, and six years ago I had only two hours slight relief from lumbar sympathetic blocks to help my legs, but I don't see that I have much choice. I have to wait until July 14th. He could have done it this Friday, but it would have been at the hospital where I have just had my ketamine nightmare - and then he is going overseas. He's also put me on high dose cortisone again, because there are some thoughts about this being inflammatory/auto-immune.
He didn't get much trying to follow up my problems with the nurses - just had them tell him that they must have misinterpreted what I was telling them (grrrr), but was quite supportive of me having put in a written complaint to the hospital directly. The Director of Nursing has acknowledged it and promised me that it will be properly investigated. In the meantime, just trying to stay strong/positive :(
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.
On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.