I have had this illness for about 21 years but only the past year have I had the experience of being too sore to touch. By this I mean for someone to touch my arms any more then VERY lightly and to lay in bed some nights is almost all I can bear to lay on the bed even with foam cushions on my mattress. How sore are you? What do you do to help this? Has yours progressed? Mine began about a year ago from mild to now being very severe most days and nights, or all the time.