Hi,
Since a year I suffer from total body swelling - anasarca. At the beginning only my thighs would swell. I took diuretics and the swelling went away entirely. But after a couple of months the diuretics couldn't take off the whole swelling. Every time a little bit more stayed, although I increased the amount of diuretics. All possible tests are ok. Only the MRI shows a very big amount of edema localized very deep. It's all over my body, I assume 20 litres = 20 kg. I used to have and still am suffering from anorexia. Could anorexia cause lymphedema? I have never heard of this, there is nothing about this in the internet. Can primary lymphedema concern the whole body? Or could it just accumulate in the whole body because of a dysfunction of some lymph vessels lower?
Good thinking! See if you can get a prescription from your doctor for lymphedema therapy. You can find those therapists by searching lymphedema therapist and often, by looking for your local cancer center. She or he will teach you to do lymphedema (LE) massage to move the fluids out. You will aslo end up getting compression garments to help, and possibly an LE pump.
I am also in the same boat, I have not been diagnosed with it but i get extreme body swelling especially in my thighs and can vary in inches with hours between measurements. I am also on diuretics and have been severely anorexic for 10 years. Ive always blamed it on my diuretic use but it was a problem even before I began abusing medications- that just made it more severe. Are you underweight? Apparently my bmi is so low that fluid balance will be very hard to manage anyway but its still frustrating! I've woken up this morning puffy and 2inches wider than yesterday. my brain can't tell if I'm gaining weight or its edema!
Its so nice to know someone else is in a similar situation.
keep positive and try to rationalise when it gets particularly bad as i know it sets me off for a bad day with my anorexia.
take care x