Born with CMT and Chronic Lymphedema of the feet and legs is my most recent diagnosis. As if living with Charcot Marie Tooth disease is not enough.
The above photo is nothing compared to the severe edema I cope with on a daily basis. They swell about 3 times the size pictured above on my worst days. Which seem to be becoming a daily struggle.
I’ve tried support stockings, propping my legs up, etc. Nothing seems to help except for when I sleep at night. Therefore, the reason I was diagnosed with chronic lymphedema. As soon as I’m up and about each day the edema comes back within a few hours.
My doctors have tried water pills too. Nope, nothing, they do not help. Coping with CMT and chronic lymphedema, plus other health problems from the Charcot Marie Tooth disease is not easy. If I truly wanted to keep the edema from getting so bad. I’d have to sit all day every day with my legs propped up.
Most of all I’d have no quality of life, and I can’t live like that. I’ve always been an active woman. I can’t sit around and do nothing, I’d go insane.
Do you have this problem? I’d love to hear from other CMT patients who cope with CMT and chronic lymphedema. Share your story in the comments.