Lymphedema Pain

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?

Lymphedema in both legs, from auto immune disease, not cancer. Compression socks (when I can get them on) have mostly just moved swelling around, but I have kept trying. Same with elevation—lowering my legs after resting with them up is the worst pain as the fluid shifts. Exercise is the only relief for me, plus lots of fluids. I am lucky that my flare ups are episodic, but any injury (severe osteoporosis) can trigger the swelling—want to try massage next time.
The biggest frustration is the complete lack of medical interest

Has anyone suggested compression garments. I wear compression socks along with compression capris for my lower body. Then I add in a compression T-shirt. I have more trunckal lymphedema. This along with a lymphatic massage every two weeks seems to help. This compression treatment is great during the cold weather but I can’t do it in the summer so much! I do believe this is lifelong. Nothing really cures it. Best of luck to you.

Was wondering how you’re doing. My mom appears to have lymphedema in her right arm. I’ve encouraged her to see her doctor, but she’s reluctant. She hasn’t had any cancer treatments or surgery on her arm. She has neuropathy due to vitamin deficiencies, for which she will not take her vitamins supplements. So not sure what is causing it. Hopefully, she’ll get a diagnosis.

I am still looking into what will best work for me. I have been trying move around more; massaging my legs just as the physical therapist showed me; I ordered ginger masaging oil from Amazon; and a wooden lymphatic paddle. I also got a lymphatic massager that heats up. I want to try more natural stuff, someone told me to incorporate more citrus (pineapples, oranges, grapefruits and lemon s) in my diet. I am really trying to get comfort before it gets worse. Thank you all for your ideas. Keep them coming.

Thank you.

I used full body redlight therapy. You might look into a membership or buy one. Usually Planet Fitness or a sun tanning salon.
Go to a facility that has one, tell them youd like to try a 1-3 month membership since this is for medical use. You may ask your accountant if you can deduct the cost of membership or buying a large redlight lamp.
It may give you the relief you're looking for.

Thank you, yes I will.

Thank you do much. My PT showed me the same technique. I will do better at using it.

Yes I will let you know what is going on.