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Lymphedema - new support group: Let's connect

Posted by kit75 @kit75, Mar 23 7:24pm

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?

Interested in more discussions like this? Go to the Lymphedema Support Group.

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sandy8043 | @sandy8043 | Aug 25 9:52am
In reply to @ffr "Thanks for sharing, John. I have been struggling with (& cursing to!) my new compression stocking..." + (show)
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Thanks for sharing, John.
I have been struggling with (& cursing to!) my new compression stocking (foot to thigh) for the past few days. “Donning” and “doffing” have become Olympic activities for me and it is very frustrating. I asked my therapist about OTC products for a break but she sticks to the plan.
A pump is in this plan as well; she tells me it’s to be used every day and I laughed. Do you use one? Do you do the lymphatic massages? I will soon be getting my full leg nighttime compression stocking. How lucky can a girl get?!

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My husband uses a sock donner from Amazon. It works great.
https://a.co/d/9nnN6Fj
I saw it on a video by a cancer rehab PT. She is on YouTube. I will find and post the link.

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sandy8043 | @sandy8043 | Aug 25 10:07am
In reply to @sandy8043 "My husband uses a sock donner from Amazon. It works great. https://a.co/d/9nnN6Fj I saw it on..." + (show)
Profile picture for sandy8043 @sandy8043

My husband uses a sock donner from Amazon. It works great.
https://a.co/d/9nnN6Fj
I saw it on a video by a cancer rehab PT. She is on YouTube. I will find and post the link.

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She is @CancerRehabPTOn YouTube.

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ffr | @ffr | Aug 25 11:47am
In reply to @janiebill "Yes, my lymphedema was close to a Stage IV. I also go to a Lymphedema MD..." + (show)
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Yes, my lymphedema was close to a Stage IV. I also go to a Lymphedema MD who directs this journey. If yours is still in the early stages, stick with the treatment plan as uncomfortable as it is, so that it doesn’t progress. My radiation for Stage IV cancer was very intense and damaged the lymph system.

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I also had super-sized radiation as I had metastasis and additional surgeries during chemo and before radiation. I guess I should feel fortunate that lymphedema didn’t get to this point until now, 3 yrs after radiation.
Your situation is more intense. Thank you for sharing. I wish you could get that surgery sooner rather than later. I did not realize that there’s prep involved before you qualify for liposuction and then bypass.
Sending you strength as you navigate it all.

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janiebill | @janiebill | Aug 25 1:45pm
In reply to @ffr "I also had super-sized radiation as I had metastasis and additional surgeries during chemo and before..." + (show)
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I also had super-sized radiation as I had metastasis and additional surgeries during chemo and before radiation. I guess I should feel fortunate that lymphedema didn’t get to this point until now, 3 yrs after radiation.
Your situation is more intense. Thank you for sharing. I wish you could get that surgery sooner rather than later. I did not realize that there’s prep involved before you qualify for liposuction and then bypass.
Sending you strength as you navigate it all.

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Thank you…. You are very kind!

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janiebill | @janiebill | Aug 26 2:24pm
In reply to @ffr "Thank you! I am currently getting therapy from a licensed OT under a prescription from my..." + (show)
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Thank you!
I am currently getting therapy from a licensed OT under a prescription from my oncologist, based on MY determination. (Another story re lack of follow up for after effects of treatment.) I will be under her care until she thinks I’m ready to be set loose - day & night garments, self massage, pump. She makes it sound like maybe another month. Your year long therapy was a surprise based on my experience. I also don’t think I would be a candidate for surgery, but she has concern that the abdomen could become involved and maybe my other leg. I’m at a late level 1, bordering on 2; maybe you are above that?
Cancer is the gift that keeps on giving.

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Yes, I am above that…. Level 3+. The greatest and most important issue is getting therapy BEFORE you need it. When radiation is so intense, as it needed to be for Stage IV metastatic, lymphedema is almost guaranteed . It just snuck up on me. One day my ring went on the next day it didn’t. I knew what it was and started therapy, paid out of pocket, until I could get scheduled. I’m just now able to see progress! Your OT/PT needs to be a specialist in Lymphedema treatment! Very important!! I stay bandaged 48 hours at a time…. But it’s paying off.

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ffr | @ffr | Aug 26 4:56pm

My therapist (OT) is certified. Once I get discharged from Medicare-paid therapy it is to be determined if I will need to continue with lymphatic massages privately (I have a link to local, certified therapists) or if the pump and maybe self massages will keep things under control. I am getting used to the compression garments, though I battled with them the first days and have some discomfort during the day.
I will try to be a good patient as I know that this leg could become worse and/or spread upwards. Plus, the other leg is also at risk. The fun never ends.
😔

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mamab5 | @mamab5 | Sep 29 9:39am

Hi. I', 69 yrs old and have been struggling with venous insufficiency in my right ankle for about 4 years. I believe the problem began when my car door (new car) hit my leg below the knee with a very sharp edge. It was just a bump but with with the heaviness of the door and the sharp edge it really injured me and that's when the venous insufficiency started.

I've seen two vein specialists and they say it's not blood vessels failing. I wear compression socks (the lowest rx level) I prefer the ones with the toes cut out but it makes my toes swell and the foot is getting bigger. I need to go back to the clinic bc I noted when I wore my dress high heels the right shoe was tight where it used to be roomy.

I'm concerned if I don't get this under control that I will be buying one size higher in shoe for my right foot only and one lower for the left shoe. So that's a requirement to buy two pairs of shoes.....unless I can find a shoe store crazy enough to meet my needs.

I'm open to any suggestions. Best, Lisa

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