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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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@ffr and @barbieken You are here at the lymphedema support group! We talk about all kinds of cancer-caused lymphedema.
Personally, I have this condition as a result of blood cancer treatments, coupled with end-stage renal disease side effects. It is enlightening to read each person's journey and how they are handling things.
Ginger
Thank you Ginger.
After I posted my comment I thought that this was indeed the sight we were looking for! Duh.
I was just reading an article (sent by a friend) about how the cancer care team should provide lymphedema information & resources to patients, including where to get treatment and an explanation of how they are going to monitor their patients. I received none of this! I did not know to ask (I ignorantly assumed it was part of follow up protocol) and once I realized what’s going on I had to make a call to ask for a PT evaluation. Now I’m not even sure if that is the correct first step. Knowing that my keg will never go back to normal after all of this time is more than disappointing as the progression might have been preventable.
*If anyone has suggestions for me about what to expect, what testing should be done, what questions I should ask, etc., please comment. Many thanks!
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2 ReactionsMayo Clinic Connect - "Lymphedema Support Group"
https://connect.mayoclinic.org/group/lymphedema/
So nice to now have a central support group for Lymphedema information.
Thank you very much Colleen.
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6 ReactionsYou're right @kit75. We just opened a new support group dedicated to lymphedema.
Also tagging fellow lymphedema members like @mercuryrose @johnbishop @kglenda @carolk1967 @davbarinc @msm123 @sandy8043 @janiebill @lilypilly @gingerw @stillwaters @chrisbomstad @lmayo @ffr @niml @barbieken
Take these steps to participate in the group:
1. Follow the group here: https://connect.mayoclinic.org/group/lymphedema/
2. Browse topics.
3. Use the group search to find answers to your questions.
4. Post a comment or start a discussion.
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2 ReactionsColleen please change my email address.
Thank you,
Barbie
@barbieken, to change the email associated with your Mayo Clinic Connect account, go to your settings and edit email. If you need assistance, contact the moderating team using this form: https://connect.mayoclinic.org/help-center/#get-technical-support
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2 ReactionsGlad to find you here. I have lymphedema in the left ankle and calf. No doctor I saw made any mention of it. If I did, the advice was to wear support hose/socks. I noticed this starting in my late 40s and now at 74 it has gotten worse. Have a new PCP who put me in touch with a vein specialist. At least he told me to elevate the leg, wear support sock except when in bed. Am trying to get a leg pump machine ordered via Medicare, but it is slow arriving. I actually didn't know there was so much in the line of treatments. I know it is not curable, but can be kept somewhat in control. I'd like to pay out of pocket for a good leg pump machine and will seek that. In the meantime I've finally found a brand of support socks and hose that fit without cutting off the circulation at my knee and ankle. Also have OA and either it cause sis the lymphedema, arthritis, or both that causes my left knee to hurt a good deal when moving. It is good to be doing proactive things, but I'm new to the routines and am more than willing to learn anything that will help with the swelling in my left ankle and leg.
I am also hoping to learn more about lymphedema treatment for my full leg issue. I am seeing an OT for therapy and thus far have experienced the lymph massage and pump. I was just measured for my full leg compression garments (Medicare covered, thank goodness) and I do have questions for those who are living with this disease.
-Do you recommend a zippered garment for ease of getting on & off? I am considering this for my nighttime leg stocking.
-Best fabric for pants/jeans so that they don’t stick to the covered leg?
-Favorite low Ph cream with no fragrance that might be Yuka approved as well?
-Rollers?
-Home pump? And/or certified lymphatic drainage massage therapists?
-Do you ever go without the leg garment for special occasions? If so, do you wear OTC compression socks or pantyhose? Is it that much harder to get your compression garment on afterwards?
-Helpful hints?
Thank you!
I have lymphedema in both legs but a little worse in my right leg. I was prescribed 20 to 30 mmHg compression socks for the daytime but I take them off at night. I found putting the socks on to be the pits even with demos from the PA and using one of those devices that is supposed to make it easy (not for me). I put up with them for about 3 months before finding some zippered 20 to 30 mmHg compression socks. They are easy on, easy off and seem to be working OK for me. I also try to sleep with my feet elevated slightly above my heart to help with the drainage. Until I bought an adjustable bed, I put a couple of folded blankets under the mattress at the bottom of the bed to raise it slightly. At night, I put a moisturizer lotion on the feet and legs and wear a pair of loose diabetic socks.
What a good idea. I had 24 axillary lymph nodes removed when I had the lumpectomy about 8 months ago but suddenly have lymphodema in both legs and feet. I will be seeing the lymphodema clinic on Wednesday. It is very painful and difficult to walk properly due to my swollen ankles. My legs are slightly relieved by elevation higher than my heart but once I put them on the floor they fill up again. I have tried supportive socks but they just go into pockets of lumps and hurt even more. I would be happy to hear of other people's experiences.