Nes 123, I'm in the "digging for information" phase right now. So much learning! And, in the process, I'm learning how horrible this is for some people. Our daughter's pain appears to be different. Constant, but not as extreme as your daughter's. She's really pretty much her same chipper self with a very noticeable limp and discomfort, some inability to make the knee do what she wants it to do, definitely temperature changes in leg, and pretty noticeable muscle loss. Sensitivity to touch, but not extreme at all. With the new diagnosis comes a whole different approach to PT, so we'll see what this brings as far as improvement.