When to wear sleeve?

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aggiemegs
aggiemegs Member Posts: 146
edited July 2016 in Lymphedema

I'm curious about when you need to wear a sleeve. Tomorrow is 3 weeks since BMX with ALND. Any time I ask my BS any LE questions, he tells me "Don't go looking for trouble where there isn't any!" I get it, but I need to know! I've started very brisk walks this week, getting my heart rate elevated and sweating a good bit. Is this something I should be wearing a sleeve for? What about when I graduate to running? Lifting weights? I just want to do all I can to prevent LE from becoming part of my life!!!

Comments

  • rainnyc
    rainnyc Member Posts: 1,289
    edited March 2016

    Aggiemegs, do you have any swelling of your arms or hands or fingers? Any heavy feeling in your arm? If not, I would agree with your BS not to borrow trouble. That said, if you're worried, you can always consult with a qualified LE therapist, who can take baseline measurements of your arms and fingers so that if you are concerned in future those measurements will be on file.

    In my case, my MO noticed that the fingers of one hand were a bit swollen and referred me to a LE therapist. But even if you haven't noticed any symptoms, there is no reason not to get a consultation. In any case, I would not purchase a LE sleeve without a consultation, the reason being that the therapist will know better than a layperson what to prescribe. And there are things, as for instance that you should never wear a sleeve without a glove, that you need to know.

    For what it's worth, my LE therapist says, "Exercise! We love it. That and hydration are the two best things you can do."

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    I don't have LE, and I aim to keep it that way. My PT/LE specialist has had me introduce activity cautiously and with monitoring. I always have gloves and gauntlets with me when I do aerobics--if I have swelling, I'm to put them on for the rest of the class.

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2016

    Talk to your LET (LymphEdema Therapist) for input/further education. Unfortunately very few Drs know 'diddly-squat' about LE or how to handle it/deal with it individually. An LET will either be a PT (Physical Therapist) or OT (Occupational Therapist) with additional education. if you haven't already seen an LET - do so for a baseline and education about it.

    'It' is not as simple as just walking into a supply house and 'somebody' selling/ordering garments to you. Besides the size/measurements, there is also the compression level. The wrong compression level can do more harm than good. Weird me - I have to have low compression or I puff up huge quickly - especially hand.

    There is no one way for all to handle their LE as we are each so unique but there is a lot of information that applies pretty much the same but needs 'tweeking' for different ones of us. For me, it's day garments all the time I am 'up' and my garments have to be custom as OTS (Off The Shelf) are impossible for me to wear (gloves especially as I have webbed fingers - syndactyly). I also have a night garment to wear while sleeping. And a FlexiTouch MLD that I use daily. But not all need what I do.

    I am very active and I find the more I do the better my LE is. My LET guy (who is an OT) tells me to do any and everything I want to which includes riding (our horses and my bicycle), mowing yards with my push mower, flyfishing (he's a fly fisher too), boating/canoeing, among other 'things'. For hiking, I have a hiking stick that I like to use and it also deters loose dogs that want to run up. I find warm/hot weather is better than cold but for many it's the other way around. Where we live, winters are brutal so it's the Base Gym for keeping active but doesn't add up to as much as I do when it's nice and warm/hot out.

    Remember that not all ever have to deal with LE but it makes sense to get information to try to protect yourself. Unfortunately, for some we still developed LE. Has you Dr told you to not allow BP or blood draws on the surgery arm?

  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2016

    agglemegs, here's information for a smart, safe workout following bc treatment:

    http://www.stepup-speakout.org/Handout%20doc%20for...

    Definitely ask any member of your team for a referral to a well-qualified lymphedema therapist for baseline measurements and personalized tips for reducing your lymphedema risk. Here's how to find one near you:

    http://www.stepup-speakout.org/Finding_a_Qualified...

    Let us know what you discover, please!

    Hugs,
    Binney

  • aggiemegs
    aggiemegs Member Posts: 146
    edited March 2016

    Thank you so much, everyone! Probably should have come here before surgery. So much good info! My BS did write me a script for a sleeve "just in case," but he said nothing about a glove!!! He also did a baseline fluid measurement test (BIS, I think?) a week before surgery. And when I went and bought the sleeve, the lady did all the measurements on my arm.

    No symptoms thus far, and really hoping to keep it that way! Glad to hear that it doesn't seem like I will need to wear the sleeve as preventative. Thanks again!!

  • Kicks
    Kicks Member Posts: 4,131
    edited March 2016

    A glove (or gauntlet) is important. The sleeve is compression so without a glove thee compression may force fluid down into the hand. I normally have no hand/finger swelling however I do need a glove (to first finger joint). I do have a gauntlet that I use for short times when working the horses so I have a better 'feel' but if I leave it on too long, fingers will swell.

  • Jennie93
    Jennie93 Member Posts: 1,018
    edited March 2016

    I had the LE specialist consult, got measured and got a sleeve & gauntlet, although I have no arm swelling. She told me to wear it as a preventative measure if I went on an airplane, or visiting some place that's at a considerably higher elevation, or if I'm going to be doing some kind of unusually heavy work/lifting. Normal everyday activities like cleaning, gardening, carrying groceries and so on, no need for it, as long as it's pretty much the same stuff you are used to doing. Exercise too, lifting weights is ok as long as you start out very "low and slow" and increase very gradually. I was told there was no need to wear the compression for exercise as long as I take it slow and have no symptoms.

    Others have been told differently, however. But it makes sense to me, and I'm doing fine.



  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2016

    I had one lymph node removed, and whole breast radiation (which includes level one nodes). The LE specialist I consulted a few years ago told me exactly what Jennie's did, except I found out about the gauntlet on these boards. I do not have LE so I just wear the sleeve and gauntlet for air travel or high elevations. I increase any exercise gradually. So far so good.

  • El_Tigre
    El_Tigre Member Posts: 520
    edited March 2016

    Hi

    Has anyone had tricep pain? I lift weights (like 4 pds so far ;) ) but it's been a week and I still have a slight tricep pain, my back of the upper arm. It's on the affected side and I wear a sleeve now for prevention but I was curious if the back of the arm pain was related or just my healing from the BMX

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    You might have developed rotator cuff impingement from the surgery.

  • El_Tigre
    El_Tigre Member Posts: 520
    edited March 2016

    could be but it's more south of the shoulder. I'm hoping the sleeve fixes that but if not I still see a physical therapist, THANKS!!

  • AndreaC
    AndreaC Member Posts: 220
    edited March 2016

    Hi all -

    I just found this thread. I had a BMX in March of 2015 for bilateral BC...followed by chemo and rads. My lymphedema didn't appear until after my rads. I only had rads on the left side - that was where I had lymph node involvement. (The RO had wanted to do both sides but couldn't figure out a way to do it without overdosing me on radiation in the central chest region).

    Anyhow, the lymphedema is mild...I noticed it myself (I am an RN and knew what to look for). I eventually had lymphatic massage then was fitted for a glove and sleeve. I was told to wear them all the time during the day, but sometimes that is just not practical. I wear them a lot anyway.

    Re BP readings...I get my BP done on the right side. Although more lymph nodes were taken from that side, there is no lymphedema since I did not have radiation on that side. Rads can really destroy those nodes, as I have discovered!

    El Tigre, I have some tricep pain on the right side (my unaffected side). I think it may just be lingering effects of chemo, or maybe referred pain from the initial surgery. It is better since I started working out at the gym.

    Andrea


  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    I hear you. Triceps pain is the current expression of surgically-caused rotator cuff impingement for me. I get exercises (and a list of things not to do) from my PT.

  • tsoebbin
    tsoebbin Member Posts: 474
    edited July 2016

    I have a question.... What is considered high elevation?

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    That is my question, too.

  • doxie
    doxie Member Posts: 1,455
    edited July 2016

    That's probably relative to where you live. If you live on the coast and fly into Denver, that might be high enough to trigger LE. If you live in Denver, then it might take a trip up to nearby Pikes Peak to do it. I've heard of concern about taking the elevator up to the top of a very high building, such as the Willis Tower (formerly Sears Tower).

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