hi Nancy,

I too have Lipedima. I had GBS in 2000 and lost 240lbs. It felt great to have the weight off. in 2004 I got Lyme Deases. My bodyas crashed from it. No one will listen to how it has changed my life. Everyone say's Lose weight...I have now gained 100lbs back and can not move. I need to find a Dr in MA who knows about lypedima to help me. I have been trying. Your post caught my eye. My legs and arms are a whole different size than my top have of my body. Lyme left me with this as well as fibro and CFS. I wish you luck and feel free to contact me. I have always had "sturdy" legs but after GBS I never really lost them but know they have blown up.  best of luck,

Jane

They can try to pad the heel more before wrapping but that is always the place that rubs or feels like "cutting" at when I'm wrapped I think its from the foot moving it's just a place of friction.

I regained some weight about 80# and had anasarca. My legs have to be in TED hose and I am on lasix and I know it is not a problem of my legs getting rid of the water. It caused a lot of problems at work also. I had to go home, I was leaking on the floor. I was happy to see a whole site dedicated to lyphedema. 

Sara you forgot your H. 

You touched on two things I relate too very much, the relief of finally knowing it's now our fault, then the realization that if it's not our fault that also means there isn't much we can do to change it. And with that changing it, yes early diagnosis would have made life much easier, instead I was just deemed "fat" for so many years and just gained gained gained to a point with the lymphedema, etc a lot of damage is not reversible at this point. I wish your daughter the best with early maintenance. While I can wear compression, not for very long, I notice the pinching etc makes me not able to wear them as long as I once did.

Thank you for sharing your story. It will keep me from feeling sorry for myself as my lymphedema isn't as severe.

I wish you further success!