Lymphedema Pain

@dah23 Welcome to Mayo Clinic Connect! I'm sorry that you have had to endure breast cancer and treatment for it. How are you doing, now?

I will second your experience with using a lymphedema massage therapist! My gal also taught me how to do some of the basics on my legs, myself, so I could stay ahead of major issues. Being able to get out and walk was a key factor for me, also.
Ginger

Hi, I developed lymphedema in my right leg and left arm after finishing chemo for breast cancer. The arm was a direct result of the removal of lymph nodes in my armpit. However, the hypothesis about my right leg is that the lymphstic system in my eg was damaged during a surgery when I was four. Anyhow, I have used thigh high stockings with fairly good success, but then it got worse as I gained weight. Thanks menopause. I went to a lymphedema massage therapist and it was amazing. I had to wear the stocking during the day and wrap my leg at night. It helped. I would recommend finding a PT who specifically does lymphatic massage. My first PT just did some basic exercises and then sent me home with a packet. Not helpful. Good luck!

@katona, I hope you saw the helpful post from @sandy8043. You might also be interested in connecting with members living with lower limb lymphedema not related to cancer in these discussions:

- Lymphedema in legs https://connect.mayoclinic.org/discussion/lymphedema-in-legs/

- Anyone with lymphedema have a knee replacement? https://connect.mayoclinic.org/discussion/knee-replacement-with-lymphedema/

- Lymphedema in lower extremities https://connect.mayoclinic.org/discussion/lymphedema-in-lower-extremities/

Have you tried an Epsom Salt bath or foot soak? I know people who say it helps with their leg pain. I don't know if it would help with lymphedema or not.

Hi I'm sorry for all having to deal with this. I was diagnosed , 4 months ago. I am over weight. My ankles and feet along with my lower legs are extremely huge due to the lymphedema. I just started using a machine that I put my legs into and uses pressure to move the fluid. Any suggestions to receive the excruciating pain in my feet and legs. It stabbing and piercing. I know to elevate them. I get to the point, like right now, were I can't take it. I've never had cancer. (I am truly sorry for those who have it AND the lymph) I wish I had positive comment to say but I don't know how to stop a sudden onset of this. Any information would be awesome

I had cancer in my mouth and had surgery, chemo, and radiation. This resulted in lymphedema in my face and neck. I was taught massage and that worked well until it didn't. I used a variety of compression garments as well. My surgeon prescribed and my insurance paid for a lymph massage machine that uses air pressure to massage my face, neck, and torso. I love it. Its made by Tactile Medical. It takes 32 minutes per day and it's very relaxing. I know there are others who use it too. Do a search on Connect and see this link https://tactilemedical.com/our-lymphedema-solutions/

@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

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.