Hi d scarlet and welcome to NeuroTalk. I had to google eruthomyalgia as I'm not familiar with it...
http://emedicine.medscape.com/article/200071-overview
Here is the link to our Rare Disorders forum...
http://neurotalk.psychcentral.com/forum2.html
You might try posting there. I'm glad you've joined us but sorry for the reason...sounds very painful!