Lymphedema - new support group: Let's connect

Posted by kit75 @kit75, Mar 23 7:24pm

First off, thank you for these various support groups. They provide a helpful way for patients to connect and get help/support from other patients for their medical issues.

Not sure who decides or where to post a suggestion for a new support group - for "Lymphedema"?

If you do searches for lymphedema, you find posts in:
Cancer
Cancer: Managing Symptoms
Skin Health
Men's Health
Bones, Joints & Muscles
Neuropathy

with the majority of lymphedema posts within the Breast Cancer group.

I have been newly diagnosed with lymphedema, but not a result of breast cancer. When just searching the wider internet for lymphedema information, much of the information is related to breast cancer. When looking for help, they sometimes suggested elevating the limb. Or, they might suggest don't carry heavy items with the affected limb. My limb is my leg, hard to elevate, and need to carry my body weight daily with it :-/

I feel a separate support group would be beneficial since people that have had lymphedema would be able to offer suggestions on various treatments and suggestions to the newly diagnosed that we don't always get from our providers to deal with the swelling and/or pain. We have various treatments including manual lymphatic drainage and compression therapy. We also need to have specific exercises to treat the affected area. Then there is skin care and diet discussions. And we may need pneumatic compression pumps that may help with maintenance at home and/or dry brushing. Maybe discussions of surgical treatments.

Since lymphedema is a progressive chronic condition with no known cure that affects millions, it seems like it would be beneficial to have a dedicated support group. Women with lymphedema as a result of breast cancer may have many helpful tips or self-care suggestions, but since they primarily monitor the Breast Cancer group, they never see a lymphedema post under Men's Health or other groups that don't pertain to their existing conditions.

Any chance of getting a new group created specifically for Lymphedema patients?

Thank you.

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

@kit75

Thank you Colleen,

As I indicated I am new to lymphedema. I believe my lymphedema was caused by radiation to my pelvis. When I started having swelling in my legs, I would talk to my cancer doctors and they did not seem to know the cause of the swelling. Then they sent me to have a venous insufficiency test, which came back clear. They did suggest I wear compression socks to control the swelling. It took a while to finally get a diagnosis of lymphedema. Once I had a diagnosis, I could then see a physical therapist to do drainage massage and short-stretch compression bandages. The therapist helped reduce the swelling, but not sure what I should do since I am no longer seeing the therapist.

I wear my compression socks and try to do the exercises they suggest, but seems like there should be more effective things to do to control.

Since I am new, I don't have any helpful tips, which is why I was hoping this new group could offer suggestions from people who have been dealing with this for years.

Jump to this post

You can look up “Dry Skin Brushing” and “Manual Lymph Drainage” on YouTube. There are many videos that show how to drain the fluids off your body. Good luck.

REPLY

My favorite source other than my own Mayo OTs is http://www.cancerrehabpt.com. She has great Instagram and YouTube videos as well.

REPLY
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