Sue,
I'm sorry things have gotten so bad for you. These newest symptoms sound troubling, indeed.
Meanwhile, it sounds as if your usual methods of coping aren't cutting it for this new pain. The only idea I have to suggest is TENS. For me, it short-circuits the spasming. It might or might not help you.
I hope you can find a solution for this. Meanwhile, I can't help but hope this could be a trigger for you finally getting a diagnosis and treatment.
Karen