Feb 6, 2019 03:03PM Trishyla wrote:
Hi there, blah333. I have truncal lymphedema on both sides, but my right side is most affected. When I overdo things, like exercising or carrying heavy things, my lymphedema will recur, causing swelling, tightness and generally a squishiness. Can't think of a better way to describe it. I have reconstructed breasts, so that's where the fluid accumulates. I would imagine if I didn't have recon, the fluid would collect in my trunk below my armpits.
So, it really does sound like truncal lymphedema to me. And you're right, few health care professionals even know what it is. It usually takes a good lymphedema specialist to diagnose you. If you can find one in your area it is worth seeing them, even if you have to pay out of pocket.
The lymph drainage massage for truncal lymphedema is very different than for lymphedema in your arms. It's important to get it right or you can make it worse.
There are a couple of threads here on Breastcancer.org that deal with lymphedema. I don't know how to link on this site, but if you do a search using the term lymphedema they should come up.
I hope you can get a proper diagnosis.