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Topic: Vent of Sorts - I Want A Smaller Arm...

Forum: Lymphedema —

Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Jun 4, 2006 04:44PM

Jennifer wrote:

I have been in and out of treatment several times in the last 3 years since diagnosis of breast cancer and lymphedema. The first time was for 9 months in which I wrapped day and night. I do get some reduction but not much and most of it comes from when I wear my reid sleeve. I massage daily and keep my arm moisturized. Wrap or wear a reid sleeve to bed, and wear my juzo sleeve during the day, and take the neccesary precautions. My arm which is my dominant right arm is still much larger then the other side - beetween the wrist and elbow. Even though is is bigger I can get it soft. I have been to two different lymphedema places, the first place for the first 9 months and then at the hospital out patient for another 3 months. The hospital is who fitted me for a reid sleeve and juzo sleeve. But they also released me once they knew I had the massage routine down. I had gone back to the first place several times either for what I consided a check-up a couple of times and then for ROM and fascia release after different phases of reconstruction. Each time they would also help with my arm too. I can't live in PT going all the time. I do the best I can and try to be very careful. I have had no further complications a side from an occassional achy arm in which I elevate and baby it when it gets this way. But my arm is stil much larger and I often read where many of you have had significant or complete reduction of your arms. I want to know your secrets. Please anyone?

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Jun 5, 2006 08:32AM andys wrote:

It sounds like you are doing everything right. My le is in my left (non-dominant) arm. The one thing that I have discovered is that when I am keeping up with my exercise routine ( either swimming or walking on the treadmill with varying elevations) my lymphedema seems to get/stay better. In fact, after the initial decrease in swelling of about 50%, I didn't see any improvement until I started swimming. So, I guess you could try addding some mild aerobic exercise (always either with sleeve or wrapped) and see if that makes a difference.
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Jun 5, 2006 09:18AM RobinTN wrote:

thanks for the info about swimming,my left arm is not that swollen but it is swollen enough to the point that it hurts and my shirts fit tighter on that side also it is hard to put my left arm next to my body.I dont have a sleeve but am going to ask my dr for a rx for one on my next visit.It hurts really bad,and living with constant pain also causes me to have severe depression.Somedays i wonder why I even try..and today is one of those days.
I and all of us fighting bc have been thru pure hell and i dont see why we have to keep suffering.
Oh well.i didnt mean to start venting but i just needed to get somethings off my chest.thanks for listening.
Robin....."I wont back down".... Dx 11/3/2004, IBC, 6cm+, Stage IV, Grade 3, 1/9 nodes, mets, ER+/PR+, HER2+
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Jun 5, 2006 12:30PM sherry7 wrote:

Robin don't lose your hope or spirit. I have also been trying to adjust to this thing called LE. I wear my sleeve and glove daily and do the massage as regularly as I can. If you can't get your arm close to your body have them check you for trunkel LE too. I got the pressure in the armpit, around my wrist and upper arm and then in the chest and back. I hope it doesn't try to travel anyplace else. I feel like spandex woman already. Anyway I wish you luck and make sure your people helping you are truly LE specialist, a class or two will only get us in trouble.
Be well, Sherry
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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Jun 5, 2006 12:51PM NPat wrote:

Don't give up hope. Keeping LE under control takes work. I have had LE for 22 months... not that I am counting. I wear my garments faithfully (afraid not to do so) and get remeasured every six months for new garments. This must be done to control the swelling because the garments stretch. Are you wearing custom garments or ready-made. My first set were ready-made and caused my arm and hand to reswell in 3 days requiring 6 more weeks of aggressive massage and wrapping. Now I do not wrap but wear a custom glove and sleeve as well as a night sleeve. I also have breast LE and wear a well fitting bra that Barbara at Womens Personal Health Resources helped me select. Also, was your LE therapist certified? This makes a big difference. In my area we have one certified one that has been practicing for several years and is excellent. I highly recommend a routine when managing LE. Think of it as a part of your daily habit as you would brushing your hair or teeth. My LE arm is now smaller than my right arm... partly because I need to address increasing my strength slowly since I have lost some muscle mass as I have been avoiding lifting tasks. Don't give up... you can control this beast!
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Jun 5, 2006 03:28PM Jennifer wrote:

Thanks for the encouragement ladies. Yes both places I went to the PT's were certified/trained in the treatment of lymphedema.

Yes I have made lymphedema care part of my routine. I found an easy way to do my longer night time routine. In the shower I make sure to clear the paths so when I get done I can immediately work on the arm. I do a mini version of my full massage in the morning too.

Guess it's time to get remeasured for new sleeves. I started with a custom mediven, then moved to a custom juzo, the a shelf juzo. Guess if I look at it I did decrease some what to be able to move to a shelf sleeve. I did recently call the fitter and told them about the bio concepts sleeve and they are checking it out for me.

It must be a good sign that exercise was mentioned because I am returning to Curves this week. I did it before and then got wrapped up in my reconstruction. I was also wrapping then and the bandages didn't stay on too well. It's sad but I really don't/can't swim and we have a pool - lol. Go figure that one.

So now I am motivated again. Gee where can we go and recieve this kind of support. Guess I needed the pep talk and gentle reminders. Thank you so much ladies.

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Jun 5, 2006 06:30PM Binney4 wrote:

Jennifer, you're an inspiration, no kidding. Hey, if you have a pool you don't have to swim to benefit from the water. Someplace I read a LE pool exercise routine that sounded very pleasant. If you'd be interested let me know and I'll try to remember where I saw it (remembering things has to be done by appointment these days!) Let us know how the Curves works out for you. Go for it!
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Jun 6, 2006 03:26AM andys wrote:

Make sure you wear a sleeve or bandage when you exercise at curves. Also, Binney is right, just splashing around the pool can be helpful - something about the pressure of the water. Have fun.

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