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Lymphedema - new support group: Let's connect

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

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 this 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.

Welcome to the new group created specifically for Lymphedema patients. What's your story? How are you managing lymphedema?

Interested in more discussions like this? Go to the Lymphedema Support Group.

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sandy8043 | @sandy8043 | Mar 24 12:40pm
In reply to @janiebill "My Lymphedema Surgeon has told me to not use the pump at this time. It could..." + (show)
Profile picture for janiebill @janiebill

My Lymphedema Surgeon has told me to not use the pump at this time. It could be because I’m in such an advanced stage. They told me why but darned if I can remember! I’ll ask when I go Wed.

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Oh, okay. Hopefully they can help you. My thoughts and prayers are with you. Take care.
Sandy

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sandy8043 | @sandy8043 | Mar 24 12:41pm

I have learned a lot from this PTs website.. She has some good ones for,head and neck cancer. She also has YouTube videos.
https://www.cancerrehabpt.com

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chrissermd | @chrissermd | Mar 24 2:31pm

I am happy to find this brand new support group for lymphedema. I have lipedema and it is hard to find support. But, this group will be beneficial and much better than talking to myself. Thank you!

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kit75 | @kit75 | Mar 24 6:11pm
In reply to @colleenyoung "@kit75, this is a great idea and thanks for kick-starting this support group that welcomes everyone..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

@kit75, this is a great idea and thanks for kick-starting this support group that welcomes everyone experiencing lymphedema related to cancer and other conditions.

Let's start with introductions. Pull up a chair and share your experience with lymphedema.

@kit75 @lilypilly @janiebill @sandy8043, how about getting the ball rolling. What caused your lymphedema? What part of the body is affected? What tips would you share with others?

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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.

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lilypilly | @lilypilly | Mar 25 9:00am
In reply to @sandy8043 "Have you tried a lymphedema pump? I use one made by Tactile Medical. My surgeon prescribed..." + (show)
Profile picture for sandy8043 @sandy8043

Have you tried a lymphedema pump? I use one made by Tactile Medical. My surgeon prescribed it and insurance paid for it. I also do massage. But the,pump really helps. I will try and find a link and post it.

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I looked into it but was told they do not ship to Canada.
Thank you

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kit75 | @kit75 | Mar 25 6:02pm
In reply to @sandy8043 "I have learned a lot from this PTs website.. She has some good ones for,head and..." + (show)
Profile picture for sandy8043 @sandy8043

I have learned a lot from this PTs website.. She has some good ones for,head and neck cancer. She also has YouTube videos.
https://www.cancerrehabpt.com

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Thank you Sandy,

It does look like Kelly has some helpful resources on her Cancer Rehab PT site.
www_CancerRehabPT_com

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kit75 | @kit75 | Mar 28 5:50pm

When looking for compression stockings, does anyone have thoughts on which brands are better/worse?

Here are some of the brands I found:
Allegro
Jobst
Juzo
L&R
Medi
MoJo
Sigvaris
Therafirm (Thuasne)

If you have thoughts on any other brands, please let us know.

Thank you.

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2 replies
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lilypilly | @lilypilly | Mar 29 9:42am

Anyone has any experience with THC or CBD and Lymphedema?
Any research out there?

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janiebill | @janiebill | Mar 29 1:34pm
In reply to @kit75 "When looking for compression stockings, does anyone have thoughts on which brands are better/worse? Here are..." + (show)
Profile picture for kit75 @kit75

When looking for compression stockings, does anyone have thoughts on which brands are better/worse?

Here are some of the brands I found:
Allegro
Jobst
Juzo
L&R
Medi
MoJo
Sigvaris
Therafirm (Thuasne)

If you have thoughts on any other brands, please let us know.

Thank you.

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If you are diagnosed with Lymphedema and Dr will write a Rx insurance might pay. If you have Medicare they will pay for three (a year) compression garments. If private insurance, check with your company. As of Jan 2025 there are new laws concerning insurance coverage for people with Lymphedema. That way you can get a custom pair…. Measured just for you!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 4 6:01pm
In reply to @kit75 "When looking for compression stockings, does anyone have thoughts on which brands are better/worse? Here are..." + (show)
Profile picture for kit75 @kit75

When looking for compression stockings, does anyone have thoughts on which brands are better/worse?

Here are some of the brands I found:
Allegro
Jobst
Juzo
L&R
Medi
MoJo
Sigvaris
Therafirm (Thuasne)

If you have thoughts on any other brands, please let us know.

Thank you.

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Good question, @kit75. You might appreciate joining these related discussions:
- Compression socks: How do you know the strengths and size to buy? https://connect.mayoclinic.org/discussion/compression-socks-how-do-you-know-the-strengths-and-size-to-buy/
- Compression socks for blood flow while living with neuropathy https://connect.mayoclinic.org/discussion/compression-socks-for-blood-flow-while-living-with-neuropathy/

@janiebill, I didn't realize that about custom compression garments and the new law covering cost. Did you get a custom-made compression garment?

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