Hi everyone ~ I'm a 52 year old woman and I was diagnosed with Dercum's this year. My incredible PCP suspected it and sent me to Mass General in Boston, where the diagnosis was confirmed. I've had one painful lipoma in my thigh removed and I have more lipomas in that thigh and in both shins. My doctor at Mass General can send me to pain management/dermatology/surgery for the lipomas but as far as everything else that seems to come along with Dercum's, they don't offer much.
I've found some of the Facebook groups helpful but I would love to see a support group here. I'm trying to pace myself with the amount of information I consume but I see so much of myself in so many of the posts I read! Strange medical issues have been plaguing me for years and while I am grateful to have a Dercum's diagnosis, it is also frustrating, as everyone reading this already knows. I do love research and putting together the pieces of a puzzle but it feels like we're all out here doing this on our own.