Wondered if anyone with cfs/fm can relate to the terrible sensation of arms and legs literally crawling and jerking so hard they can't take it anymore! My sensations are so bad it can last for days with no relief with any meds and I end up at emergency room and still haven't been able to get any relief there and am treated like I am a nut! I have been given huge amounts of pain meds and muscle relaxers to sleeping pills and Xannex and none of it stopped it! When my RLS gets this bad it has lasted non stop as long as 72 hours and I am left in so much pain from the constant movement and jerking and so sore and unable to rest at all I finally pass out from exhaustion. I have been jerking so hard that I have actually socked myself in the face and busted my lip. It is almost unbelievable and I don't see how this can be called RLS especially when you are prescribed meds for Parkinson's disease and it's the only thing that does help. I find mine gets much worse when I have not been able to sleep for days or I have overworked myself, especially my legs, such as a day I am feeling good and have a little extra energy. I noticed this began as leg pain then jumped to jerking and crawling sensations. I would not wish this on my worst enemy. I am scared to death to not sleep for a few days or put in a position where I have to walk more than normal. Then again this can come on if I am not active at all. I am 48 years old and have had fm for over 20 years, since 2012I've been home bound, I only seem to be getting worse and worse, I don't know what's next!