Beverly,
I have been progressing also. Every household task is now so challenging. (Example: I just got a load of laundry together and in the washer, and I had to sit down). I have been experiencing leg muscle pain, which is also progressing and happens even when I sit or lie down at night. Our leg muscles are so overworked just trying to keep our balance when standing. I agree with your statement” No one understands because we look fine.”