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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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Actually, the new law was effective Jan 2024. But yes, I have compression sleeves, gloves, a night sleeve and a pump. Your Dr should write you a Rx if you’ve been diagnosed with Lymphedema. I am also in PT for Lymphedema and have been for a year.
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3 ReactionsAre you on Medicare? Medicare covers 3 compression garments per year for most areas. Check with your ins co. If not medicare
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3 ReactionsYes, several. 3 garments per body part as well as night garments , pump …. Most items that are affected. You can google the new law. I do believe you must have a physicians diagnosis. It’s much better to have custom made just to fit you if possible. Best Wishes!
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3 ReactionsI had some axillary lymph nodes removed in 2013. I am just starting to see lymphedema symptoms, but my therapist says the swelling is starting under my shoulder blade. Compression is not practical. She gave me some exercises, has anyone had success with exercises?
I am sorry you are having trouble with this. I had to read your post a couple times to really grasp it. The lymph node under your collar bone is the ones my doctor is always feeling.
There is a thread that I think you might be interested in;
https://connect.mayoclinic.org/discussion/lymphedema/
I am very curious about you might go about treating this. Have you talked to your doctor about this, just to make sure there isn’t another reason for this?
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2 ReactionsI saw my oncologist who recommended a physical therapist. There is no one LANA certified within 120 miles of me. She helped a little, and if there is nothing new I will do the exercises she recommended.
Since this is not a limb, compression is not an option.
Just wondered if there is anything new...
I wear compression socks for my lymphedema in my legs and recently started wearing a man's compression shirt to help with back support and it puts a squeeze on my back and chest area including under the arms. It might be something to discuss with your physical therapist and oncologist. Do you think a women's compression shirt might help along with the exercises?
I have never seen a women's compression shirt that covers the shoulder blades. There are some mastectomy vests that partially cover the shoulder blade but the unneeded compression on the chest is uncomfortable.
I don't have a lot of swelling (yet), trying to keep it that way. I was just wondering if there is something new in treatment of lymphedema.
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1 Reaction@chrisbomstad I had lymphedema briefly during chemo for breast cancer in my legs and feet. I had switched to a plant-based diet during chemo and discovered that several of the vegetables I was eating in large quantities were loaded with sodium. Celery has the highest sodium along with spinach & beets. I also quit walking as much as I had been because I thought it was aggravating it. Wrong! I started walking at least 3 miles a day and watching my salt intake, drinking lots of water and it went away. I hope this helps!
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1 ReactionAnyone experienced Lymphedema rask/bumps on neck?