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.
Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.
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.
My favorite source other than my own Mayo OTs is http://www.cancerrehabpt.com. She has great Instagram and YouTube videos as well.