I empathize with you in your fear of what is happening. There really is such a lack of information. As mine was progressing, I was told that it usually progresses to a point and then calms down. While it was advancing, my life stopped for about 6 months. I could not even lift a piece of silverware without it feeling like a 10 pound weight. My entire body was ravaged. I couldn't drive, fold laundry, cook, barely chew my food. Everyday was hell and the nights were even worse. I can now do most things. I have to pace myself and not get upset when I have bad days in order to stay positive. All you can do is to try to eat healthy, try to move around when you can, and I highly recommend meditation and breathing techniques.