After visiting 4 doctors for pain and major foot swelling, an orthopedic surgeon told me you need to see a lymphedema doctor because you have lymphedema. Six years later, I'm dealing with primary lymphedema in all my limbs. It has been hard to tell certain doctors, like my ob-gyn, that I have lymphedema, only to hear: "No, you just carry your weight in your legs and arms."
I've gone from liking the way I look to almost hating how I look. Clothes don't fit correctly. But with the help of my Tactile pump, compression, and therapists, I'm getting the disease under control. I wish there was more education and knowledge about it. It's hard to maintain with two small children, but I need to be better for them, my husband, and myself.