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Discouraged with lymphedema: How do you cope?

Posted by wellgirl @wellgirl, Oct 9 2:31pm

I have Stage 2 lymphedema since my mastectomy five years ago.
As uncomfortable as it is to have to wear compression 24/7 and use the pneumatic pump, it was feeling like it was under control. The last time my volume was measured, it was 4.2% larger than my other arm. Today I saw my lymphedema therapist and my arm was 10.8% larger than my other arm. It isn't noticeable to most people it is discouraging.
Standing at the bus stop today a total stranger asked me what was wrong with my hand. I wear a gauntlet. She couldn't see the compression hidden by my sweater. Most of the time I am patient and explain about it briefly. I have even come up with ways to answer little kids who come up to me and ask "are you going to get better?" It is just so tiring to have strangers ask me about it almost every time I go out. And it is discouraging to be thinking I'm doing everything right and then to find out the swelling was up high enough that my lymphedema therapist suggested going back to wrapping my hand and arm and wearing the bulky circ-aide sleeve.
I know there are worse things in life but right now I need to know how other women cope with having lymphedema.

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

mamabea | @mamabea | Nov 3 1:50pm

I actually thought lymphedema was caused by my surgeon when I had my lumpectomy. I applaud all of the women who support one another in the lymphedema fight. I had no idea that congress passed the bill for the bras. I use the Prairie bra. Prairie came out with a new bra that doesn't have those big, wide shoulder straps.

Thank you to all of you.

REPLY
1 reply
wellgirl | @wellgirl | Nov 3 2:18pm
In reply to @mamabea "I actually thought lymphedema was caused by my surgeon when I had my lumpectomy. I applaud..." + (show)
@mamabea

I actually thought lymphedema was caused by my surgeon when I had my lumpectomy. I applaud all of the women who support one another in the lymphedema fight. I had no idea that congress passed the bill for the bras. I use the Prairie bra. Prairie came out with a new bra that doesn't have those big, wide shoulder straps.

Thank you to all of you.

Jump to this post

One of life's little ironies, "mamabea", is when we get a lumpectomy or a mastectomy, the government will pay for our bras!
Thank you for the info about the Prairie bra. I've been wearing the Jobst Belisse bra, which even with insurance is still very expensive.

REPLY
gerjuanna | @gerjuanna | Nov 3 9:39pm

Thank you everyone for posting sharing your stories and information. I’m reading as much as I can take.
This disease has weighed heavy on me causing me to think about everything… I’m glad i found you all!
I want to get rid of/tame this disease, I’m interested at looking into other family countries for help.
I was reading there may be hope outside America.

REPLY
1 reply
wellgirl | @wellgirl | Nov 4 9:09am
In reply to @gerjuanna "Thank you everyone for posting sharing your stories and information. I’m reading as much as I..." + (show)
@gerjuanna

Thank you everyone for posting sharing your stories and information. I’m reading as much as I can take.
This disease has weighed heavy on me causing me to think about everything… I’m glad i found you all!
I want to get rid of/tame this disease, I’m interested at looking into other family countries for help.
I was reading there may be hope outside America.

Jump to this post

Before you renew your passport and pack your bags for anything but a vacation, please check out LE&RN (Lymphedema Education & Research Network)'s Centers of Excellence.

Here are there standards https://lymphaticnetwork.org/centers-of-excellence-standards

Here is a map of where they are in the US and abroad and a list of them.
https://lymphaticnetwork.org/centers-of-excellence

REPLY
neekie2 | @neekie2 | Nov 4 2:33pm

I am wondering if you are on a regimen of any kind of exercise to help or to prevent lymphedema. I am asking because I attended a lunch and learn at my local cancer services office last week and there was a Lymphedema specialist who gave us a booklet with different exercises that help. She also passed around the various sleeves for those of us who didn't have one (to see what they look like).

Wednesday night I am going to a BC group meeting at a local hospital and the speaker there is going to be discussing Lymphedema, so I will see what they have to say because I want whatever relief I can get.

Also, (I hope that this is allowed...) I joined an online group and do exercises with them throughout the month. All of the instructors are BC survivors themselves. They have free classes for folks with breast cancer - Yoga, Restorative Yoga, Chair Yoga, Pilates, Qi Gong, Forest Bathing, Writing Workshop, weekly Meditation classes, etc. Coincidentally, I was having a LOT of issues with swelling and discomfort with my lymphatic system after my double mastectomy and had signed up for the Qi Gong class just to see what it was about. That particular day, the instructor geared her class toward our lymphatic system. I planned on just watching it (I was in a crappy mood and not feeling well.) But I ended up doing the entire class and it was amazing and actually helped. She only teaches that class once a month (because she teaches other classes in the area she is from in Massachusetts. I am in Louisiana...the classes are all via zoom.) Her class is amazing. She talks while we do the movements to tell you what we are doing, how to do it, why we are doing it, the area of the body that is being impacted, how it benefits us, when to breathe, when to exhale, how to adjust if you are more advanced or new to Qi Gong/exercise.

I literally have not missed a session with her (Kim O'Bryan) because of how much it helps with my Lymphedema issues. And I am not trying to promote her or the organization, but I participate in a lot of what they offer. It is with and through: http://www.survivingbreastcancer.org

There are folks from all over the country who participate in these classes. Again, it is free and I have benefited enormously from the Qi Gong class in particular.

I just wanted to share because of the pain and frustration we experience with Lymphedema, and how it has benefited me. It won't be for everybody. Make sure your doctor has cleared you to exercise. And by the way, most doctors don't know what it is, which it's kind of like Tai Chi. I literally never saw Qi Gong before that first class with Kim.

I hope this helps everyone if you are able to exercise.
Renee

REPLY
1 reply
wellgirl | @wellgirl | Nov 4 5:11pm
In reply to @neekie2 "I am wondering if you are on a regimen of any kind of exercise to help..." + (show)
@neekie2

I am wondering if you are on a regimen of any kind of exercise to help or to prevent lymphedema. I am asking because I attended a lunch and learn at my local cancer services office last week and there was a Lymphedema specialist who gave us a booklet with different exercises that help. She also passed around the various sleeves for those of us who didn't have one (to see what they look like).

Wednesday night I am going to a BC group meeting at a local hospital and the speaker there is going to be discussing Lymphedema, so I will see what they have to say because I want whatever relief I can get.

Also, (I hope that this is allowed...) I joined an online group and do exercises with them throughout the month. All of the instructors are BC survivors themselves. They have free classes for folks with breast cancer - Yoga, Restorative Yoga, Chair Yoga, Pilates, Qi Gong, Forest Bathing, Writing Workshop, weekly Meditation classes, etc. Coincidentally, I was having a LOT of issues with swelling and discomfort with my lymphatic system after my double mastectomy and had signed up for the Qi Gong class just to see what it was about. That particular day, the instructor geared her class toward our lymphatic system. I planned on just watching it (I was in a crappy mood and not feeling well.) But I ended up doing the entire class and it was amazing and actually helped. She only teaches that class once a month (because she teaches other classes in the area she is from in Massachusetts. I am in Louisiana...the classes are all via zoom.) Her class is amazing. She talks while we do the movements to tell you what we are doing, how to do it, why we are doing it, the area of the body that is being impacted, how it benefits us, when to breathe, when to exhale, how to adjust if you are more advanced or new to Qi Gong/exercise.

I literally have not missed a session with her (Kim O'Bryan) because of how much it helps with my Lymphedema issues. And I am not trying to promote her or the organization, but I participate in a lot of what they offer. It is with and through: http://www.survivingbreastcancer.org

There are folks from all over the country who participate in these classes. Again, it is free and I have benefited enormously from the Qi Gong class in particular.

I just wanted to share because of the pain and frustration we experience with Lymphedema, and how it has benefited me. It won't be for everybody. Make sure your doctor has cleared you to exercise. And by the way, most doctors don't know what it is, which it's kind of like Tai Chi. I literally never saw Qi Gong before that first class with Kim.

I hope this helps everyone if you are able to exercise.
Renee

Jump to this post

Hi Renee,
Thank you for the valuable information. I just checked out the survivingbreastcancer website and wouldn't you know that I live 55 miles from Boston and I'd find out about this Boston based group from a woman in Louisiana! I recently saw a program on Boston PBS where a guy was teaching Qi Gong. Like you, I found it very helpful. I had learned a little T'ai Chi years ago in a pain management program (unrelated to cancer.) It also is a very gentle way of "centering".
What my lymphedema therapist has told me is if you keep moving, doing any exercise, it keeps your lymph-fluids moving and that is good for your lymphedema. She has recommended swimming as a good way to get the lymph fluids flowing.
Again, thanks for writing.

REPLY
1 reply
neekie2 | @neekie2 | Nov 5 11:50am
In reply to @wellgirl "Hi Renee, Thank you for the valuable information. I just checked out the survivingbreastcancer website and..." + (show)
@wellgirl

Hi Renee,
Thank you for the valuable information. I just checked out the survivingbreastcancer website and wouldn't you know that I live 55 miles from Boston and I'd find out about this Boston based group from a woman in Louisiana! I recently saw a program on Boston PBS where a guy was teaching Qi Gong. Like you, I found it very helpful. I had learned a little T'ai Chi years ago in a pain management program (unrelated to cancer.) It also is a very gentle way of "centering".
What my lymphedema therapist has told me is if you keep moving, doing any exercise, it keeps your lymph-fluids moving and that is good for your lymphedema. She has recommended swimming as a good way to get the lymph fluids flowing.
Again, thanks for writing.

Jump to this post

Of course! I hope you get relief. It is so frustrating on top of everything else going on!
My best to you!

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