Fill Out Your Profile to share more about you. Learn more...

Summer strategies?

Options
kriserts
kriserts Member Posts: 61
edited May 2022 in Lymphedema

Hi, I've had lymphedema for several years, but last summer it got worse and I had the massage and wrapping and started wearing a Tribute night sleeve and the custom flat knit sleeve during the day, so compression pretty much 24/7 for six months.

I'm sorry, I just can't see wearing this heavy, ugly flat knit sleeve out in public in the summer. (This is not the type of sleeve where you can buy a pretty pattern.) I've tried to find blouses I might wear, or summer sweaters, but I live in NYC and it gets hot and humid and I hate the heat. I can accept wearing it inside my house, but when I go out, I want it off.

What have other women here done? Do you 1. just wear it 2. cover it somehow and if so, what are your tips? 3. chance going without it outside?

And if you don't wear it out of the house, how troublesome have you found that? Does the swelling bounce right back? Or are you able to get away with some time out of the sleeve?

Comments

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited April 2022
    Options
    I don't wear that kind of sleeve but I highly recommend stopping worrying about what other people will think. If you need to wear it, just wear it! Don't worry about covering it up. Wear whatever clothes you'll feel most comfortable in. I'm also on the East Coast so I know the icky summer heat and humidity of which you speak. :) I don't usually wear my sleeve but I'm super lucky to have mild lymphedema so I can get away with it most of the time.
  • kriserts
    kriserts Member Posts: 61
    edited April 2022
    Options

    If you were at the same stage, and had no issues with the knit sleeve, that would be helpful information. But until then, "just get over it" feels dismissive.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited April 2022
    Options

    I wear my sleeve outside at all times. Going without in the heat would make my LE worse. I also wear it to protect my arm from sun exposure, scratches, and bug bites. Having cellulitis once is enough for me.

    I tend to buy dark gray sleeves. They look less medicinal at least.

  • rah2464
    rah2464 Member Posts: 1,192
    edited April 2022
    Options

    Kriserts I have not had to move into the more specialized knit sleeves yet just the standard ones that can be patterned. Even then I hate the look of my gauntlet and sleeve when I am wearing something short sleeved or sleeveless. I can have on a nice pretty dress then ugh

    I do wear them though because I don't want things to progress. So I suit up and go anyway. I consider it my "armor" along with a compression bra you cannot see. I hope someone will come along and provide some tips for the types of garments you are having to wear.

  • specialk
    specialk Member Posts: 9,226
    edited April 2022
    Options

    kriserts - my LE is definitely worse in hot weather, and I live in FL where the heat and humidity is pretty unbearable in the summer - even for those without LE. Is there any possibility of using a pump and then wearing a regular weight sleeve? I had a bad flare a few years ago, and had to return to therapy for a finite period of time, but while there the PT had me try their in-house pump for 30 minutes and it significantly reduced my arm circumference, even in just the 30 mins. I ended up getting a pump (completely covered by my insurance) that I use for 60 mins and then if I don the sleeve right afterward I can wear a regular weight one.

  • hersheykiss
    hersheykiss Member Posts: 660
    edited April 2022
    Options

    Kriserts, heat is a trigger for me, and I wear sleeves year round. In winter months, I wear Juzo Dynamic flat knit sleeves, 20-30 mmHg. I switch to LympheDIVA sleeves, 30-40 mmHg, for the summer. They are much cooler and lighter than the Juzo sleeves, and the increased compression keeps my lymphedema manageable. Maybe such a system would work for you, but check with your lymphedema specialist first. Good luck to you.

  • kriserts
    kriserts Member Posts: 61
    edited April 2022
    Options

    Thank you @hersheykiss, that's an interesting strategy, I'll talk it over with my therapist. Thank you.

    @specialk the pump/lighter sleeve idea is interesting, too, thank you.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited April 2022
    Options

    I didn't say get over it. But life is a whole lot easier and less stressful when we live the way we want or need to without taking other people's opinions about our appearance into account. Especially since almost nobody even actually cares, so we're worrying over nothing.

  • kriserts
    kriserts Member Posts: 61
    edited April 2022
    Options

    @parakeetsrule I'm sure you're trying to be helpful. For the future, you should know that telling other people what they "should" feel diminishes their experience. (That's like, basic listening 101.) I came here to for very specific advice from women who deal with the flat knit sleeve, and platitudes like this feel patronizing. But thank you for your effort.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited April 2022
    Options
    It was just a suggestion, not a command or judgement. I didn't tell anyone how they should feel. You asked what other people do, and that's what I try to do when it comes to things like this. I can't always manage it but it does make life a lot easier when I can.
  • piperkay
    piperkay Member Posts: 132
    edited April 2022
    Options

    From when I first started wearing sleeves, my PT said I could take a few hours off now and then, though I'm probably in the mild category, and not everyone would get the same advice. In the summer, when heat seems to aggravate, I wear it during the day but maybe not in the evening when it's cooler, or maybe not if I'm going to be in the air conditioning all day. Per my PT's recommendation, I've been using the Mediven brand, and the sleeves pretty comfortable even in the heat, but it's the glove that really bothers me more. I have a Juzo "pretty" sleeve which is way more comfortable but the PT says it provides much less "containment," so I only have the one which I wear when I don't want to be so obvious. Funny story, though: once when I was out while wearing a black set, a young guy thought it was a cool accessory! And another time, a grocery store employee - another young man - asked me where I got it because he needed a sleeve to cover his tattoos while at work! HAHA!

    At my last appointment with the BS, she told me she thought I might try to "wean" myself off the sleeve somewhat, wearing it during the week but not on the weekends. Not sure I'm ready to do that, but at least I'll consider it. They are annoying, for sure. But again, this advice probably isn't for everyone; I'm just sharing my own experience.

  • kriserts
    kriserts Member Posts: 61
    edited April 2022
    Options

    Thanks @piperkay, that's helpful. What's funny is I'm a competitive cyclist, and I wear the black Juzo sleeve when I ride. My team kit is black so it matches. I've been asked about it by curious young men, as well, who seem to think I'm making a fashion statement. :)

  • Dita
    Dita Member Posts: 14
    edited May 2022
    Options

    Ive had lymphedema for nearly 9 years and I feel your pain. I wear cotton long sleeve shirts with a beige sleeve underneath. My wardrobe seems to be full of white cotton shirts now!

    I also wear a black sleeve with active wear because i see a few people qith compression sleeves working out so I feel it goes less noticed.

    I wear short sleeves at dinner for a few hours without my sleeve.

    I wear a night sleeve which manages it better so that I can go for a few hours.

    I still hate it but you do get used to it.

  • kriserts
    kriserts Member Posts: 61
    edited May 2022
    Options

    Thanks, @dita. I've been thinking along the same lines!

  • ratherbesailing
    ratherbesailing Member Posts: 118
    edited May 2022
    Options

    I'm sorry you're going through this. My only suggestion is that Coolibar specializes in UPF clothing, and they they have a lot of tops and dresses in very light fabrics. Many have thumbholes that would cover the sleeve, and they come in some nice patterns and also solids. I love their dresses in the city in July-August. I know that doesn't address the issue of the sleeve itself but it might make it more bearable if you do need to wear it out.