1. < Cancer: Managing Symptoms

Lymphedema Pain

Posted by marchelle @marchelle, May 2, 2024

I have been doing chemo since July 2023, and as a side effect, I have developed pitted lymphedema in my arms, legs, thighs and side. I am in chronic pain, and my legs feel like bricks, and heavy, making it hard to walk at times. Has anyone else had this problem? If so, do you have any suggestions for me. Thank you 😊

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

Mentor
Ginger, Volunteer Mentor | @gingerw | Jan 8 10:00pm
In reply to @mlledaffodil "Lymphedema in both legs, from auto immune disease, not cancer. Compression socks (when I can get..." + (show)
@mlledaffodil

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

Jump to this post

@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

REPLY
sandy8043 | @sandy8043 | Jan 12 9:07am

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/

REPLY
katona | @katona | Feb 5 11:45pm

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

REPLY
2 replies
sandy8043 | @sandy8043 | Feb 6 2:39pm
In reply to @katona "Hi I'm sorry for all having to deal with this. I was diagnosed , 4 months..." + (show)
@katona

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

Jump to this post

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.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | 5 days ago
In reply to @katona "Hi I'm sorry for all having to deal with this. I was diagnosed , 4 months..." + (show)
@katona

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

Jump to this post

@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/

REPLY
View MoreView Less
Please sign in or register to post a reply.