Lymphedema and the heat

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cowgal
cowgal Member Posts: 833
edited June 2014 in Lymphedema

It is about 106 today and it got me to wondering what others do.  I realize in the perfect lymphedema world that we would never get too hot or too cold but many of us have to be out in some of the less than desirable weather.  I guess I figure in this kind of heat, it is probably better on the system to just go ahead and take the sleeve off and put on some sun block and do what you have to do.  I didn't know if anyone else had any strategies for this but figured that I am not the only one that has to be out in the heat a little bit.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012

    Cowgirl, hello. It's hot here too. In fact it'll be 112 this weekend when our kids who live in Alaska will be visiting--they are going to MELT!Tongue out

    If you live someplace dry you might want to use a spray bottle to wet your sleeve down occasionally (allow it to dry in between wettings). If it's humid and the garment takes longer than 15-20 minutes to dry that's not such a good idea, as lingering dampness can create a fungal infection risk. Still, if it's hot/dry enough, the water feels really good. Short of a spray bottle, I've been known to wet my arm down in a drinking fountain.Undecided We also use the spray bottle to keep our necks wet, and if it's not enough, even our shirts and shorts. Extreme weather calls for desperate measures!

    Taking my sleeve off when it's that hot, as attractive as that sounds, really isn't workable for me. Heat causes increased swelling, so my garments are more important than ever in the heat. But other cooling methods are available. Cooling vests like construction workers wear can really help, as they keep the core temperature down. Other cooling items keep head or neck cool, and there are even cooling packs to stuff in your bra. These are NOT ice packs, just cool packs--extreme cold is no better for LE than extreme heat is.

    Ya' gotta stay hydrated, and that can be hard to remember to do. There are all kinds of tote-along water containers, some with straws. Whatever works.

    Of course stay in the shade as much as possible, and early morning hours are best to be outdoors. For us that means getting up early -- our current rise-and-shine time is 5:00. Where we live many stores accomodate the temperatures by opening much earlier this time of year. Even our zoo opens around 6:00 in the summerLaughing.

    This stuff sure isn't easy!Frown
    Stay cool!
    Binney

  • Nitocris
    Nitocris Member Posts: 187
    edited June 2012

    Hi Cowgal,

    More information in the following articles:

    http://www.lymphnet.org/lymphedemaFAQs/riskReduction/summerTips.htm  - NLN/LymphLink - Cool tips for a hot summer

    http://www.celebratehiltonhead.com/article/1813/health-note-swelling-summer-in-the-south - Swelling and the heat in the south - Madeline Chatlain CDT-LANA

    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm  - Step Up-Speak Out -  scroll down the page to:   Summertime heat discomfort in compression garments and bug protection.
      
    From the Lymphedema Association of Queensland:

    http://www.lymphqld.org/care.htm -  Care of the skin in summer time

    http://www.lymphqld.org/effects.htm  - Effect of the summer heat on lymphoedema

    Eating frozen fruits also help to stay hydrated.  I freeze grains of grape, slices of juicy fruits like mandarines, oranges, peaches, etc.
     
    As Binney said, keeping body temperature down is important.  A folding hand fan can help. (always carry one when I travel).    Wrapping a wet towel around the neck or around the arm is helpful too.  The swimmers' microfiber towels are very handy because they have their own seleable containers that you can keep in the fridge. (http://www.fit4sport24.com/Arena+Microfiber+Towel+body+dry.htm)
     
    Staying cool is not a problem we have had to face during the last days here.  Temperature is around 12-14 degrees!Frown 
  • BeckySharp
    BeckySharp Member Posts: 935
    edited June 2012

    Nitocris--Are you talking celsius degrees or farenheit?  If farenheit do you have snow?  I would take those temps right now in celsius!

    Funny that someone in a cold clime is telling us how to stay cool with LE in summer.  Anyway THANKS so much for the tips.  Our next LE support meeting on the 10th is about reducing risks of flares in summer.  The LE therapists are going to present but we are to bring any helpful  hints we have.  Your sites will give me more info to take.

    cowgirl and Binney--Yuck to your temps.  Stay cool and be careful.

  • Nitocris
    Nitocris Member Posts: 187
    edited June 2012

    Hi Becky,

    Temperatures are in celsius degrees (about 53-57 Fahrenheit?).  Finns love to go on vacation in hot countries but often have no idea on how to deal with the sun.  For instance, in winter, one of the favorite destination is Thailand.  As soon as they get there, they lay down in a blazing sun for many hours and get..... horrible sun burns.

     For people with LE, it is even worth because there is no education whatsoever on how to deal with the heat, humidity, bugs and emergencies (cellulities during holidays).  Now, that we set up a "lymphedema project" here,  I started gathering information on various aspects on how to cope with LE.   I learned many tips on this board and I am passing them on to Finnish siskot (sisters).

    I would love to attend your next support meeting. If you learn any new tips, please let me (and the others) know .Cool

  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012

    Becky, the swimming section on StepUp-SpeakOut might be interesting too:
    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Swimming_and_lymphedema

    Nitocris, people who are not used to heat really are at special risk when vacationing in warmer climes. Great idea to educate about that topic!

    Hugs,
    Binney

  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    Why do lymphedema info always say to use lotion? I can't figure out how you can use lotion under the compression garments? Don't they get greasy and gross? Also, in the summer it would be horrible to have lotion on your skin. I am confused here.

  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2012

    Momine, the lotion has to do with keeping your skin healthy and moist. Lots of things dry it out (for instance, in the summer it'd be sun, wind, swimming--in winter it's cold and the general dryness of the air). The reason that's especially important for us is because of our infection risk. Even micro-cracks in dry skin can allow bacteria to enter and create havoc. Lotion also keeps cuticles from drying out (so they don't cause cracks and pulls) and helps avoid chapping of knuckles and elbows. 

    Some lotions are greasier and grosser than others, but all of them are supposed to be absorbed by the skin (some quicker, some slower). So waiting a few minutes after applying lotion makes it easier to put the garments on over the lotion.

    I use Vani-Cream lite from Walgreens, which goes on without that greasy feel and absorbs quickly. But there are lots of choices. Before LE I never used lotion at all. Now it's a couple-times-a-day routine. Can't say I like having to use it, but it saves a lot of potential grief.Undecided

    Lymphedema--BAH!Frown
    Binney

  • Momine
    Momine Member Posts: 7,859
    edited June 2012

    Thanks binney, I guess I need to get the hang of it. I have tried before BC to use somthing to keep my cuticles from flossing, but gave up, because they seem to do it whatever I put on them.



  • cowgal
    cowgal Member Posts: 833
    edited June 2012

    Thanks ladies for all the suggestions.  They are really helping.  It has been 109 all week so far!  I would gladly take the weather in Finland over this heat wave. 

  • garnet131
    garnet131 Member Posts: 64
    edited July 2012

    This is just the topic I got online to research, as I am leaving in the morning for a week of camping with 90-100 temps in the forecast. It's my 23rd year attending this festival and I didn't want to give it up due to LE (which began due to increasing my exercise the week before last year's festival, but weather was closer to 80 and my arm didn't increase during the week there).  Thanks for the reminder about my "neck thing," a cooling wrap that you soak in water and tie around your neck. I just added it to my morning list cuz it's hanging in the garage since this is the only time I use it.

    I did make an accommodation to LE this year by booking a college dorm room about 1/2 hour away where I can retreat during the heat of the day to beat the heat, shower, wash sleeve/glove, and do MLD--then go back to the fest grounds for the late afternoon and evening events and sleep in my tent. Prior to a friend suggesting that on Thursday, I really had mixed feelings, knowing that camping in the heat wasn't the wisest thing for me to do. I feel much better having made that reservation. Another friend (no LE) is going to join me to also escape the heat, so that helps with the cost. 

    I know wearing sleeve and glove will still be somewhat miserable (since I was miserable today in my condo with a/c on low) but hopefully retreating to the dorm will mitigate any extreme LE reaction.  Now I'm going to go check out the tips at SUSO. Thanks again.

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