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Lymphedema - new support group: Let's connect
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?
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@johnbishop
Thank you for the tip about the blanket under the mattress, I will try that.
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3 ReactionsI'm new here. Where do I find more comments about lymphedema?
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1 ReactionWelcome @abby9, The search function on Connect is a great tool for locating more specific information to any topic. Here is the search results for "lymphedema" - https://connect.mayoclinic.org/search/discussions/.
Clicking on the buttons at the top of the search allows you to find discussions on lymphedema, comments from members, newsfeed posts and more. You might want to start by scanning through the discussions and newsfeed posts.
How is the lymphedema affecting your daily life? Is it difficult to manage?
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1 Reaction@kit75 @sandy8043 @lilpilly
Nice to meet you here in this forum.
I too had tongue cancer....such a delicate spot to get the beast!
SLP recommended Cancer Rehab PT Youtube clips - Kelly is very thorough and I found them very beneficial!
I see an registered massage therapist for HNC manual lymphatic drainage treatment.
From going in once or twice a month, significant improvement since almost a year ago.
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2 Reactions@zenren14 I love her stuff. I started using a,vibration plate to get all my lymph moving. I saw her video on at, too. https://youtu.be/FUvzIBs4ZX0
@sandy8043
Where is your lymphedema? Mine is on the neck from double dissection. There's all sorts of tips and tricks out there! I hope vibration plate works well for you.
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2 Reactions@zenren14 Mine is neck mostly right side around under my chin to left side from neck direction and lymph node removal.
I do self massage, tactile pump, and now vibration plate. I did myofascial release massage, too until my OT retired.
@sandy8043
Your'e well underway so glad to know. Keep up the good work.
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3 ReactionsMine is around eyes seems to have come on after cataract operation but a year ago and no improvement
@abby9, welcome. May I ask where you are experiencing lymphedema? How are you managing it?
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