Advice for Summer?

[Kallenubble]

I was diagnosed with lymphodema a few months ago, and have gradually gotten used to wearing thigh high compression stockings on my right leg. But I have to say I’m not looking forward to doing the same in the summer. What if it’s too hot for compression stockings? We own an inn and Summer is our high season. I’m on my feet in and around the building most hours of the day, and it can get hot. I can’t see myself wearing the compression stockings with shorts, but long pants and compression?? That’s much too uncomfortable most summer days. Does anyone have any advice and ideas?

[Lynora]

There are ways to alleviate the heat:

Storing the garment in the freezer overnight, then donning first thing in the morning.

Keeping an aerosol can of water (most pharmacies sell it) - then spraying the garment periodically during the day.

If you have a floor level AC in your inn - spray the water over the garment (and the leg!), then stand next to the AC for a few minutes to reduce the heat!

Invest in light cotton work trousers, or linen (yeah, I know, creases like a b**** but it does keep the skin cool!)

If the garment does get too much, and you become anxious whilst wearing it, take it off. Discuss with your lymphoedema therapist the option of wearing a garment over night (there are nightwear garments available now) - or look into IPC (intermittent pneumatic compression) which you could use for an hour a day, after work, then treat your compression garment as a therapy, and perhaps only wear it in the mornings whilst you are prepping rooms for service.

[Kallenubble in reply to Lynora]

Hi Lynora,

Thanks so much for all your great tips and advice! And thanks everyone else who joined in ( in case I don’t get to write all my responses today). Sorry about my super late reply! I’ve been too busy to spend much time on any other than business email.. anyway, I know I have to wear these things just as much as I can, especially because heat and gravity and being on my feet for work will make the swelling worse. I live in Maine, so it’s not the hottest place on earth for sure, but we don’t have AC in our house, only the guest rooms, and I’ve never not worn shorts most days in the summer. Wearing dresses will mostly be awkward when I do such things as supervising and helping with housekeeping and the myriad other physical tasks involved in the day, but I guess I will shop for something casual and see. I like the aerosol can idea, and the freezer - when it gets very hot I often wear damp socks or wet T-shirts ( when no one sees me, that is). The one thing that will be helpful is swimming, which i Love, and the ocean is pretty cold all summer. Most days I can find some time to do that in the afternoon, which will help cool me down for some time after as well. My therapist once said I should wear stockings in the water too, but fortunately she backed away from that later. (Would you agree?) I looked into a compression machine and even had someone come demonstrate it, but of course the insurance pays very little and I don’t want to spend $2,500 on this thing. But I will get a night time garment and I hope that won’t feel too hot! Thanks so much for your helpful reply!

Sigh - I used to teach and have summers off, and we had a pool, and now I have to work, can’t swim all day, and have a swollen leg! It sucks.

[Lynora in reply to Kallenubble]

Swimming with garments is now old advice. There is more benefit from a combination of movement of water on the skin and hydrostatic pressure (walking in water) which is best on bare legs.

[Kallenubble in reply to Lynora]

Yes, my therapist did say something like that. Thanks for all your amazing expertise!

[Bev-1966]

So I might be able to get compressions to wear over night instead of during the day now x

[AnneBury in reply to Bev-1966]

No. You need to wear them during the day if you possibly can. That is when you are active and gravity also plays a part.

[patsy1702]

I wear my compression panty hose every day. In the past I have gone without especially in Greece in August but I really paid the price the next day. Having said that we can all react differently to different circumstances. If I do want to take them off for a while in the heat I try to sit with legs elevated. Good Luck.

[Kallenubble in reply to patsy1702]

Thanks, Patsy 1702! I definitely elevate as often as I can, and during that time can cool down with ice packs too... I guess I’m glad I don’t live in the desert! Thanks for your reply!

[veriterc]

Why not discuss MLD with a specialist, and see if that might reduce swelling. Then say it's a business expense and you have to have it to be able to work properly. I had this, and my legs are almost back to normal - cost me £80 a month in London, but half that price in country. Before my legs reduced in size, I used to wear floaty midi length skirts - much cooler than shorts. Good luck!

[Kallenubble in reply to veriterc]

Thanks for your ideas! I do get MLD from a physical therapist with lymphedema specialty about once a week, and she has also taught me how to do it myself (although I’m probably not doing the best job with it). Insurance pays for it, but since we own our own business, we don’t have a lot of good insurance choices, and the deductible is high. (The American insurance situation is a disaster). I will indeed have to make it a business expense. How often and for how long did you have MLD to get your legs reduced so much in size? It hasn’t really helped me much, although I know without it and without the compression it would be much worse.

[CCT67]

No matter how hot I wear my (flat-knit) compression - on my legs, trunk and arms. Compression therapy with Lymphoedema needs to be year round. I learned the hard way what happens when compression therapy is avoided due to heat, vanity or any other reason: Lymphoedema becomes more severe, the cellular changes in the skin occurs more rapidly (becomes more fibrotic) , and the disease spreads more easily and quickly into other areas of the body. It’s not worth avoiding compression therapy. Even in 100 degree temps I wear my compression. I also have strategies to cope. I take breaks from the heat and go inside into air conditioning to elevate; I look for the shade; I keep my garments in the freezer so they are cold when donning (make sure they are dry before putting in freezer/fridge!);I sleep in the coldest room of the house in summer; I wear a night garment (Jobst Relax) on my more severe leg in addition to day wear. This is not instead of daytime wear - avoiding garments when vertical/standing will promote more LE due to gravity!

Lynora gave good suggestions in her response above. If no air conditioning, I lie on my back with a cold damp towel/s over me with a fan blowing directly on me which acts like air conditioning and gives good relief. I do that at night when I’m in a location without air con and night temps are over 70 degrees.

You will find your legs will swell more in heat, sadly this is normal with LE. We all have more swelling in summer and then we reduce in the cool autumn air (relief!!) In summer I always sleep with my legs elevated on a large pillow to help manage the increased swelling and promote lymph drainage back to the heart over night.

If you find your garments tricky to put on due to perspiration in hot temps then using a little bit of corn starch (or unscented baby power) helps. I always allow more time for donning garments in summer due to increased swelling and perspiration.

Garments can get wet while being worn. Circular knit garments dry more quickly than flat-knit. Skin care in summer is especially important due to cuts/scratches/insects/mosquitoe bites which can lead to Cellulitis infection in the limb. carry tea tree oil/antiseptic to keep skin clean and reduce infection risk. Only shave with electric razer, as risk of knicks/cuts is much less.

Summer is not always easy (its the most difficult season for my LE), but you will find through trial and error what helps you manage the best you can. Just avoid the temptation to go without daytime compression. Hopefully you can find a local qualified MLD therapist as MLD makes a big difference managing symptoms particularly in summer.

[ponygirl]

hi, I agree with the great advice from others already posted. In addition I also recommend filling a spray bottle with cold water to spray on during the day as that helps feel cooler as they dry. The current fashion for long and ankle length dresses is also very flattering and comfortable for work and leisure time. Also a hand held fan to waft air over your neck/wrists helps cool the blood a little when you can.

[Kallenubble in reply to ponygirl]

Thanks, ponygirl! These are all good ideas, and I know i will definitely fill up a spray bottle every day. I don’t usually like to wear dresses but as long as I find some that I can wear to work and don’t look too inappropriate or weird in, they’ll be more comfortable and less hot than long pants with compression stockings underneath!

[Discoverlife]

Hi there! For what it's worth I spent many years hiding under long trousers in the summer. I even gave up road biking (which I love) because I didn't want anyone to see my legs. Finally one summer I took the risk and wore shorts with my compression stockings. It's all good! People will look. Didn't care anymore. 😁

[Kallenubble in reply to Discoverlife]

Thanks for your response! I thought of that too, and might do it sometimes, especially on really hot days. Although I’ll still feel hot with the stockings...I’m sorry you gave up what you loved for so long!

[Snaomi]

I have to wear compression stockings on both of my legs. It isn't fun especially in summer but alternative is worse. I went my stockings with a water spritzer throughout day. It helps. Also if you can wear a hat that you can dump water on while doing chores should help some.