compression 24/7, or OK to go without sometime?

kriserts

Hi, I've had left arm lymphedema for a number of years but it's been fairly stable. Clothes are a little tight on that arm, but I can deal. Haven't seen my therapist in 4 years, haven't been wearing any compression except when I cycle. I'm a competitive cyclist, so when I'm on the bike, I wear an over the counter compression sleeve, I don't know the weight but not super heavy.

Lately my arm seems to be swelling more. I went to my therapist, and she says the volume is 10% more than my right arm. We're going to start 2 weeks of decongestive therapy, followed by a couple weeks of massage 2x a week, with a custom sleeve.

I can manage a month, but I am absolutely distraught thinking I will have to wear a custom sleeve all day, from now on. I was so isolated during Covid, and I was thinking I was going to be able to get out and start living again. I'm single and I was hoping to start dating again, travel, go to bike camps, wear short sleeves in the nice weather, all that. I can't see myself going on a date, or going to the theatre, getting coffee, or even going for a walk with a big thick sleeve on, forever.

Is there anyone here who's gone through decongestive therapy, then been able to maintain results with nightly compression, a sleeve at home, but been okay with taking it off when they leave the house?

Binney4

kriserts, I feel your pain and frustration. The answer to your question, though, is that we're all different, and what one can "get away with" might make another lose control of their LE completely. When your month of therapy ends, do work out a plan with your therapist for how you can experiment with different strategies for living your life comfortably while keeping your LE from taking over everything. It is possible to try some alternatives out without undoing all the weeks of therapy, but it will take some time and more patience than any of us like.

As for those medical-grade compression sleeves, have you checked out the designs available from Juzo and Lymphadivas?

https://juzousa.com/Products/Signature-Collection/...

https://lymphedivas.com/?gclid=CjwKCAjwqcKFBhAhEiw...

Those aren't custom, but your therapist might be able to help you find a size that will work for you. Worth a try!

Please let us know how it goes and what you discover.

Gentle hugs,
Binney

mzg

Binney4 is right that everyone is different. I can sometimes play hooky, but otherwise, I always have to wear my sleeve and glove.

On the brighter side, my black sleeve and glove (Medi Harmony, off the shelf) actually look quite sleek. Most people assume they're a fashion statement!

Wishing you luck and sending hugs,

m

PiperKay

I've been blessed with LE in my right arm for two years now, mostly stable. But although I do take the daytime compression sleeve off for a few hours when I'm out on some days/evenings, my strategy is to wear it pretty much all the time otherwise.

This past April I saw a physician who specializes in LE and he explained to me that the daytime compression sleeve works entirely differently and for an entirely different purpose than the sleeve I wear at night (custom, Tribute). The daytime sleeve (also wear the Medi Harmony product - black is cool!) uses compression to keep the lymphatic fluid moving up and prevent it from pooling in the arm or hand. The nighttime sleeve, though, functions to prevent the skin and the tissue underneath from becoming tough and hard which happens when the fluid enters the tissue and stays there. So the bottom line is that the two products are not interchangeable.

My orginal LE therapist said the Lymphediva sleeves were generally OK for occasional use, but that the Medi-type sleeves were best for long-term use due to better construction and longevity.

Binney4

PiperKay (are you really a piper, as in bagpipes? I have a good friend who is...very cool!), your therapist's advice to you sounds solid, as some of us react better to different levels of compression. I for one am compression sensitive, and Medi-type sleeves and gloves cause rebound swelling that defeats all my efforts at control. My therapist once jokingly told me I shouldn't even be in the same room with a heavy-duty sleeve! ;-)

We're really fortunate to have so many choices of lymphedema garments available, even if experimenting with them can sure get pricey! For many of us dealing with lymphedema, especially those on Medicare in the U.S. who might also be on fixed incomes, this kind of experimentation can be out of the question, since Medicare does not cover the cost of lymphedema garments, either the daytime version or for nighttime use. Unfortunately, other U.S. insurance companies sometimes follow suit and refuse to cover these medical necessities.

There's a bill before the U.S. Congress right now called the Lymphdema Treatment Act that would mandate that Medicare (and by precedent other insurance as well) cover our garments. The bill needs our continued help in contacting our Congress members to urge their sponsorship of the bill and their vote for its passage. The website below gives us easy and practical ways to make a difference in getting this important legislation passed:

https://lymphedematreatmentact.org

Please, everybody, spend a few minutes looking over the website and considering how you can help. We can all be part of the effort to make lymphedema care available, even to those who are financially strapped.

Together we can make a difference!

Hugs all around,
Binney

ThreeTree

PiperKay - Thanks for sharing the info about the difference in purpose between the day and night time sleeves. I've never heard that before, not even from my LE therapist. I think it's also interesting that you have seen a physician who specialized in LE. I didn't know there were any and I'm glad to hear that there are. Some of the things we get referred to PT and OT for don't seem to have an actual physician who is an expert in the area. I've found that some of the therapists don't really know the why's and wherefore's of these things, they just now how to execute prescribed treatment. Sometimes I get worried that a certain treatment may or may not really be OK for a given condition and would like to hear from a doctor who specializes about the specifics. The doctors who refer us to OT and PT don't really know a lot about what they are referring us for, they just tell us that the LE specialists will know what to do - I'm just not sure they always really do.

kriserts

PiperKay this is really interesting information, thank you! And thanks to everyone else who replied.