Wanted to know if anyone else out there has heard of lipedema. Not lipidemia, and not lymphedema, but lipedema. A lot of people with EDS have it and don't even know it. It's basically where your legs and sometimes your arms have diseased fat in them that causes pain and swelling. You end up with these "stovepipe" columnar legs, "cankles," and larger arms, too. The fat is diseased, so it does not respond to exercise. It is progressive, and can eventually turn into lymphedema. The only permanent treatment is liposuction of the arms and legs. You have to fight your insurance tooth and nail to cover it. And only 2 or 3% of doctors have even heard of it. Has anyone else dealt with this? I think I may have it, too.