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Lymphedema - new support group: Let's connect
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.
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HugInterested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.
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Oh, okay. Hopefully they can help you. My thoughts and prayers are with you. Take care.
Sandy
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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1 ReactionI 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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3 ReactionsThank 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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3 ReactionsI looked into it but was told they do not ship to Canada.
Thank you
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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1 ReactionWhen 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.
Anyone has any experience with THC or CBD and Lymphedema?
Any research out there?
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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