Fit and Comfort - What to expect?

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Hopeful82014
Hopeful82014 Member Posts: 3,480
edited September 2015 in Lymphedema

Hi -I don't have LE and don't want to develop it. I am not currently having any problems other than some occasional discomfort around my elbow. I was fitted yesterday for a sleeve to wear when traveling, at my PT and RO's recommendation. Most of my flights are long - 9-13 hours - so it's probably best to use one, much as I dislike the idea.

I was fitted by certified fitters at the breast health center of the hospital where my imaging, etc., is done. I'm fairly petite. The fairly light compression prescribed by my PT didn't actually achieve any compression. It was comfortable for me but apparently it was loose enough that they thought I should go up to a higher level of compression.

Both fitters felt it was a good, appropriate fit. However, my arm was kind of vaguely uncomfortable after wearing it for about 30 minutes at the fitting and remained so for the rest of the day/evening. When wearing it, I felt my fingers were a bit cooler than the other hand, although neither fitter thought so, and the color was very slightly different.

I did not purchase it as the color I wanted (black, rather than putty) wasn't available in that size and is being ordered. I'll take it to show my PT once it comes in. However, in the meantime, I wondered if anyone had any comment on how one's arm should feel once the sleeve comes off and whether what I was experiencing is normal and expected.

Thanks for any feedback. I know there's a lot of info out there on LE but I'm not sure where to start on the issue of fit and I think some of you know as much as anyone else!

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  • mary625
    mary625 Member Posts: 1,056
    edited September 2015

    I don't think I've gotten the right fit so far. The sleeve will not stay on my upper arm without rolling down, and I've tried 4-6. I'm not sure that the "right fit" really exists. Sleeve orders have been incorrectly filled with the wrong sizes to begin with. I've begun to feel that the sleeve is not doing that much for me during the day, and I'd rather be without it and all the constant tugging. Instead, I wrap the heck out of my arm at night. I know that's not really your question. I am going to wear one to fly in, and I want to point out something that I didn't learn until recently, and that is that the sleeve needs to be on before, during and after the flight--not just during the flight. Also, breaking in a new sleeve is very difficult and typically the sleeve does not feel comfortable for awhile.
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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2015
    Thanks for your insights, Mary. I wasn't warned about a break in period, although they did tell me about wearing it for a few hours each day to get used to it before traveling and they did tell me to put in on a couple of hours before departure and to leave it on for a couple of hours after.

    I will admit that I'm a bit skeptical of its preventive aspects but I am also afraid to make a long trip without it. :(
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  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2015

    Hopeful, I'm "hopeful" that all this preparation really will make your trip safe and not "eventful" in a bad way.

    Here's information about proper fit of garments:

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

    Your fingers should NOT feel colder or change color. And you should definitely have a gauntlet (fingerless glove) to wear with the sleeve. Here's why:

    https://www.lymphedivas.com/en/hand-protection

    On the topic of garment color, many of us find that when we order black it is tighter than the lighter colors. I have no idea why that is but, for instance, when I order compression camis I wear a medium in black and a small in beige. The same applies to sleeves and gloves. So if the size you've now ordered in black is too tight, you might need to go back to the lighter compression. Generally when ordering garments for preventative purposes, a 15-20mm/Hg is preferable to 20-30. It may seem to offer little compression, but if it fits well across the length of your arm that much compression is considered appropriate for people with no diagnoses of lymphedema.

    Mary625, they do make a brush-on "adhesive" that you can use to keep your sleeve up throughout the day. It's called "It Stays." You apply it to your skin where the upper cuff of the sleeve lies, and it's effective in stopping the constant slippage.

    Hopeful, please do keep us posted on your progress in finding the right garments for you. It can be a bit of trial and error, but we're all here to cheer you on!

    Gentle hugs,
    Binney

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2015
    Binney, thanks SO much. Your comments were extremely helpful, particularly re: black garments vs others. I had read the info on fitting previously but it all makes a lot more sense now having been through the process.

    I think it is interesting that they say a fairly light degree of compression is ok for preventive use; I will definitely ask my PT about that.

    And yes, I will have a gauntlet - that part was fairly easy to fit. the idea of wearing it for 15 hours at a time, however, is unnerving. :(
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  • TNNurse
    TNNurse Member Posts: 58
    edited September 2015

    I wear a sleeve and gauntlet day and night. The one for sleep is a lower degree of compression.

    As for comfort. I find it hot, irritating, inconvenient, annoying and a great big pain in the ass. However, having seen lymphedema that is out of control and dangerous, I wear them.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2015

    Yes, I've seen lymphedema in friends and am all too aware of the issue. That's why I'm getting fitted for the gear and am so concerned about getting the right fit!

    Breast cancer's bad enough - I want to try, at least, to limit the collateral damage from treatment.

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  • Redporchlady
    Redporchlady Member Posts: 113
    edited September 2015

    i wear my sleeve when my arm aches or it feels like I am carrying a brick. I was fitted and actually like wearing mine because the light compression helps alleviate the discomfort I am having. I went to the Mayo Lymphedema clinic to be fitted and the also taught my husband massage techniques I was also given excercises for my cording that I still have. I did go back in to the clinic and each time they re-measure your entire arm to watch for slight variations.

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  • Kicks
    Kicks Member Posts: 4,131
    edited September 2015

    We each have to learn what works for us individually - we are not all the same at all and what works 'great' for one, does not always work for others.

    It is quite possible to have compression with light level garments IF they are fitted correctly. I have to have light level compression as higher level causes major swelling for me within an hour of being put on. Also not all of us are built to fit in the OTS (Off The Shelf) measurement garments so have to have Custom garments that are made to order to fit us/our size and shape correctly. We got the sleeve right rather quickly but it took a lot longer to get the glove right - my fingers are slightly 'webbed' so standard glove literally cut into the webbing making very painful sores. Gauntlets work for some - not me. Fingers swell with a gauntlet but not at all with gloves. My gloves fingers only go to - not past - the first joint past knuckles.

    It is possible for mistakes to be made in the manufacturing of the garments. I've had to send back ones that were clearly not made to my measurements so they were immediately returned and corrected. One time they made one correct and the other was nowhere close to fit. (I get 2 sets at a time every 6 mths as my LET guy insists that if one set is worn all the time it has to be replaced every 3 months to retain proper compression - so it's easier for him to order me 2 set at a time and only have to every 6 months and it's easier to keep clean.

    Your fingers should not feel cold or change color or swell.

    I have no problem keeping my sleeves 'up' all and I am very active in many 'things' I have the band that has silicone 'beads' on it put on it to keep it up.

    I've never had any sort of problems with 'breaking in' sleeves/gloves - just wash them once and start wearing - no problems at all but perhaps that's because mine are replaced before 'worn out'/too old for proper compression.

    There is a difference between day garments and night garments - they work differently. Day garments are designed to work actively while we are 'up and active'. Night garments are designed to work passively while we are not being active (sleeping). They are designed differently to work,differently.

    Have you been taught MLD? Didn't see you mention that - it is important.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited September 2015
    Thanks for the info, Kicks. No, I've not yet been taught any MLD techniques. I had only 2 sessions prior to RT; presumably when we resume regular appointments next week she will do so - I will certainly ask!
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