Hey Susan
So good to hear from you
This all over lymph is jsut about the most miserable experience I've ever had.
My concern is what happens when LE goes into the chest and abdomen..as it can reakky change the entire physiology of your lymphatic system and body.
It really in a major way makes me sad to share this, because it is difficult, but you do ened to know.
As lymphedema gets into the upper body and abdomen, it will cause the lymph vessels to dilate. When it dilate, the lymphedema is made much much worse because the valves in the formerly good part of the lymph system are no longer able to close to prevent "backflow" of lymphedema. It starts a viscous cycle.
More swelling creates more dilation which creates more swelling.
Plus, in the abdomen, when this happens, the intestinal lymphatics begin to be unable to process proteins and fats. You will begin to experience protein loss. Again, part of the cycle. Low protein levels lead to more swelling...which furthers the cycle.
Also, because you have problems procedssing the fats, you may become more sensitive to "fat" in foods.
As the abdomen fills, it begins to crowd and press the other organs. Eventually, it seeks to move somewhere and can begin to move directly into the pleural cavity. Eventually also, there may be permanent damage to the thoracic duct.
The thoracic duct is the very central locations where almost all lymph is dumped back into the venous system to be eventually removed by the kidneys.
This entire system can break down...and this is exactly what has happened to me.
Treatment - trust me on this one, all the mld, self MLD, exercises (breathing ones too) may not be able to help. Eventually, it stopped helping me. That is why a year and a half ago I exploded with 65 lbs of fluid in my abdomen and why eventually, I was having more then two quarts taken out of each lung every three weeks.
I am having to go outside the norm to stay alive and keep going. I'm on demadex twice daily. Yes, diuretics should not be used generally for lymphedema. If a reader reads this, please understand this. Do not let your doc simply put you on diuretics for LE. But, there are sometimes when life preservation may indicate a need for it.
Also, even the diuretics were not able to keep the fluid under control. That is why I had to have a pleurx catheter put into each lung. Every three days now, at home, I can drain a pint off each lung. This has made a big difference and actually has help remove about 25 pounds of fluid from the abdomen as well.
Sometimes, if there is an unusually large amount of fluid in the ab, you can drain it, much like you do the lungs. However, the fluid has to be in a "pocket." Since a lymphers fluid is spread throughout the interstitial tissue level, this wasn't possible for me and probably wouldn't be possible to anyone else with lymph.
With minor abdominal LE, sometimes these biker shorts cn help. Again, it would depend on the over all condition of the lymph system and the amount of fluid retention.
When the abdomen/chest becomes full of fluid, it becomes rock hard. Even the most simple things like wrappnig, putting on shoes, picking up something becomes a major major difficulty.
I have the most wonderful oncologist and a super terrific lung (thoracic) surgeon who has helped on this. There are very very few thoracic surgeons that have experience with the Pleurx as it is new (only one or two in all of Gwinnett county)... If you need any info on this or the docs, you can always write me off list -
lymphedemapeople@aol.com. I'm always here for you. Now at least we have one that has experience with both the pleurx and LE (trained 'em I hope

)
Don't know if this answered your question, if not, please don't hesitate to let me know.
You're in my thoughts and very much in my prayers
Pat