Welcome, @mlledaffodil I’m sorry you’re dealing with such painful lymphedema from an autoimmune disease. I had bouts of it too, but while on chemo. One of the things that helped me the most, as @jkh mentioned in her reply above, having regular lymphatic massages really made a huge difference for me. Make sure you seek a licensed massage therapist. Some specialize in Lymphatic Drainage.

I have to tell you, the first time I had it done, I didn’t feel well for a day. (My massage therapist let me know ahead of time that this may be the case). That’s because of the toxins that were released into the body with the massage. So drink lots of water to help flush your body following the massage. The next day, I felt like a million bucks and each subsequent massage was beneficial with no ill effects.

Have you ever had a massage?

@mlledaffodil Welcome to Mayo Clinic Connect! Lymphodema is definitely not fun to deal with, no matter the cause. Sometimes a doctor will suggest diuretics to help. Lots of times movement helps, be it walking, or dancing with your broom while cleaning! I have done all of those, plus the lymphatic massage. Fortunately, my gal taught me how to do self-massage on my legs, what to expect, etc. so I can do it whenever needed. What a great help that is!

As to lack of medical interest, take it on yourself to be your own advocate, and figure out how to address your situation. Not only will you be able to feel better, knowing you did it with your own case in mind, but the little things you do for yourself will make a difference, and you can adjust it as needed.
Ginger