I don't believe I have anything helpful to add either, except to say that I'm sorry your daughter has to go through this stuff. I'm 24 and have had RSD since I was 12.

I had some problems with delicate and thin skin as well, leading to some spectacular blisters and infections. The solution we came up with was wearing an AFO (hard leg brace, in case you don't know the term) which kept anything from rubbing against my skin. I'm not sure that would help your daughter, it seems like this problem has become more severe for her than it ever was for me.

I don't know about any new drugs and I've never heard of photon therapy, unfortunately. I hope you find something that works though!

-Betsy