Welcome Lori @lemartin417, You certainly have a lot on your plate and have been dealing with it for a long long time. I'm hoping some member with similar symptoms or experience may be able to share some thoughts or suggestions with you.

I was not familiar with the rare condition so had to look it up and found this reference that talks about it - Cutaneous Collagenous Vasculopathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4689498/.

I have a similar looking discoloration vs rash on my legs that my doctors just said it's related to edema. I do have lymphedema as one of my conditions and have to wear compression socks to help. It sounds like you have seen many doctors and specialists over the years. Have you ever been to a teaching hospital or major health facility like Mayo Clinic to see if they might have some insight to a more complete diagnosis?