Lower limb lymphodema- how to enjoy the summer?

Hi all, I'm new to the board today. I'm 33 years old and recently diagnosed with lower limb lymphodema following cervical cancer surgery & radiation last year. I have been advised to wear compression tights grade 2, and will persevere with them through the summer. However we are off to India to peruse surrogacy on Monday and the weather is going to be extreme (40C +). I feel really hard changed about the whole illness and now that I have to wear compression tights, I get quite upset. Does any one have any experience of sun holidays and being able to take off the compression tights to feel the sun and Sand on your feet without your legs swelling? Any advice much appreciated...

18 Replies

  • Hi Capecod, I too have my lymphoedema due to cervical cancer and can really relate to your feelings. I too have good and not so good days but it is what it is and all we can do is make the best of it. I admire Bigleg for the approach taken I am not so confident but do manage my swelling with compression and exercise, this allows me the odd break especially on holiday where I swim and relax on a lounger without my stocking to enjoy the sun, then back in compression when I can (mornings and evenings usually) this way I don't feel like it rules me! Lots of cool maxi skirts and linen trousers usually help too. Enjoy the trip.

  • I went to a lecture yesterday and the talk was about taking care of our skin. A gentleman with lymphoedema in the lower limb mentioned he went on a trip to a hot country and enjoyed it thanks to clothes he bought with high protection factors. Don't forget you need to protect your feet from getting cuts or scratches so I can't imagine walking barefoot in the sand is recommended. Also take with you antibiotics in case of cellulitis. Good luck with the adoption process.

  • Hi I have a similar condition which has recently worsened. Previously I did go I sun holidays without the garments but not sure I could now, I guess it's trial and error and see what works for you

  • I have primary lymphoedema and go abroad a lot. I have tried everything over the years and have found that if I wear my old tights under my cossie its the nearest thing to bear legs. I wear class 3 tights and keep my old ones for swimming. You still get a slight tan through the tights. Also its the only time I dont have any promlems with the tights slipping, the cossie keeps them in place. Give it a try.

  • Please tell me what a cossie is. Thank you. I have lymphedema in my right leg.

  • Swimsuit!!! Cossie short for costume lol

  • Oh! Thanks. I never heard that term before. Am I the only participant from the USA here???

  • No I think there are others. I'm in Scotland but its a pretty cosmopolitan forum! Lymphies know no borders ha!

  • Well, thank you. I must say this group has been very helpful! I took one lady's advise and found a seamstress. She's made me the most beautiful dress slacks that fit my small waist/hips/rear like a glove but with legs that accommodate the lymphedema in my right leg, so you don't even notice it!

  • How lovely! Enjoy xx

  • Hullo,

    If you are doing a lot of walking then the pumping action may

    considerably relieve the LD. I went to Venice with my usual force 2 below knee socks on both

    legs and after 3 days non stop walking ( no choice in Venice) I

    could see my ankle bones both

    legs, and left the socks off without any return of swelling whilst I was there. However I've

    had LD all my life so I'm used to it and can be my own expert. If you be just been diagnosed, you probably won't have so much

    confidence or knowledge of it.

    I echo the warning of not going

    barefoot - the worst risk of getting a foot injury.

    Are you able to wear shorter socks not tights ? Or also ask for

    toeless if suitable for your condition?

    Have a good holiday

  • it is frustrating at first I don't think non sufferes realise how it affects body image and daily living, I wear below knee stockings grade 2 on both legs, it can be hot in the summer, if im going to the beach I take my socks off, but whilst I can sit on a bed with my legs elevated, I paddle etc go in the sea, once out dry the legs, apply moisturiser and any area of scrathes or anything teat tree oil. put my socks back on , so it is possible to adapt.

  • I went to Lanzarote last year when they had a heatwave, 45 degrees the one day and still 33 degrees at 9.30 in the evening. I found that because i am an early riser i would go for a 40min walk whilst still getting light with my stockings on and then return to the villa for coffee and then to get the sunbeds etc which i would lie on until the other members of the party arrived usually somewhere between 9.30 and ten. All this time i had my feet up and was wearing stockings. After compression for about 3-4hrs and exercise i was then able to remove my stockings and basically have a normal day doing nothing but enjoying the sun and swimming, this in itself can provide some good allround compression. We would usually return to the villa for a few hours before going out or we would stop in. During this time i would again wear my stockings. If we went out i wouldn't wear them. For the flights i definately wore them and made sure i performed little exercises to keep things moving. I also took ant biotics etc with me and made sure i moisturised. As i am dark skinned i am able to use a lower factor sunscreen but make sure you use this as the last thing you want is to be burnt and having to try to put stockings on. You will find what works for you but do not forego using the compression for the sake of vanity. I hope you enjoy yourself and don't let things get the better of you.

  • Ofcourse has a good point here. I used to always wear my full tights, but now my LE is under control and reduced, I occasionally wear knee highs with light tights over if I am going to the beach. Get some of the jelly shoes which are in fashion at the moment to protect your feet.

    My granded who has terrible ulcers from the condition used to swear by wading in the sea. There are lots of proven benefits to this. Iodine in the water is good for wounds. Salt baths are effective at reducing swelling as is pressure of water on our limbs. The water will support your joints and protect them. Of course make sure the sea is super clean you don't want an infection!

    I have been to many many very hot festivals where I've been having to get dressed lying down in a 40 degree tent, or hiking for hours in red hot sun with no shade, so regarding walking around, I strongly strongly advise using tights always. It takes only about 20 mins standing or walking in hot weather for my lymphie legs to swell up about a third bigger and my feet to become agony. Brilliantly fashion excuses random tight usage at the moment, so I have used the black tights with short combo quite regularly and people just think you are a bit emo rather then staring, it wasn't commented on at any point.

    My first summer I had my tights I remember ending up in tears as I had a group of friends waiting for 20 mins for me at Glastonbury as I struggled in an oven of a portaloo desperately trying to yank my tights up. I think I am about 4 years on now and things couldn't be more different. Persevering with those struggles got my legs down 4 tight sizes and I use the class 1 now to keep them in the smaller size, but they are easy to pull up in a moment :-) My legs never looked this nice in my life :-)

    I have accepted now something, my tights are for life. I am 5 dress sizes smaller form compression, so any new clothes I get I get for wearing with the tights. Basically I don't bother with trousers or jeans, so it's all about the dresses. I used to try and get my legs in the sun, but once they burnt - I have never felt pain like it. The burn was hot which made them swell which stretched the skin which hurt and made the burn hotter, I came quite close to splitting my skin. All I can say to anyone with tights for lymph is you never want to risk burning your skin, it's pretty much the worst thing you can do, and your legs will basically always be in tights in public, so it actually doesn't matter how pasty they are............ Honestly if there is a reason that you really really want them to look brown, use some fake tan.

    I completely get how distressing it is but please keep that in mind, if you use the tights and enjoy long swims in the pool or sea you could actually come back with your legs a bit smaller, it is possible. Yep you will have legs in tights but the joy of them being attractive legs I can't even express after 20 years of massive tree stumps I hid in trousers, and though its hot in hot weather that's a lot easier and cooler than lugging several inches deep of fluid around on each leg. Persevere with the tights and they will really help you :-)

  • When i was wearing my full compression tights in very hot countries; i didn't feel too hot in them; on the contrary i felt that they were protecting me - it is getting them on in the mornings that makes me swear... Also i allow myself a couple of hours a day besides the pool or on the beach without any compression BUT not in the midday sun - leave it until late afternoon or early evening. Most important is to make sure you are protected from mossie bites (when i was in India they bit through my tights!) the best thing to use was the Tiger Balm that you can get in boots or most chemists in the UK. I now travel with my lympha press compression pump and trousers; I use it twice a day - it keeps my swelling down. NNE

  • I there. I have lymphedema in my right leg following the same surgery and radiation. I wear a compression stocking (30-40 mmhg) on my right leg. I live in Florida, USA, where it is very hot in the summer. If I am spending the day at the beach I will not wear my stocking, but wear a long skirt over my bathing suit to hide my leg. I also wear regular support pantyhose, for a day, if the weather is very hot and I';m wearing slacks. I've had lymphedema for 7 years and it is an adjustment. My advise to you is keep your weight down, avoid salt/sodium or use a salt substitute, and if you can afford a pneumatic compression machine, purchase one (your medical insurance may cover it. It costs about $1,500.00 USD. I use mine at night and sometimes more often if needed. I hope that helps. God bless you!

  • Hi If you are wearing Stockings Class 2, round knitten and till your knee's, you are helped with a IPC-Compressor Unit, besides wearing these stockings. Due to prevent injury to your feet and legs. Always wear closed shoes, like sneakers. If you are looking for an IPC-compressor Unit take a look at the website of D.S. Maref from South Korea, model LX7 would suit your needs, they are very portable, they fit into your cabin luggage, together with your medication, and spare stockings. Put a sticker on the cabin luggage saying: MEDICAL EQUIPMENT, and always have a copy of your invoice ready for custums. Specially if your are making a long flight IPC treatment is very helpfull. Ask the Airline you have booked with if you are able to treat yourselve during the flight once or twice for relieve, Have a nice holiday.

  • Hi

    I asked the same question about 2 years ago when I booked a holiday.

    My Nurse told me to wear my toe less compression all the time.

    Primarily this was about working with my lymphoedema to ensure I was not risking causing damage to my legs.

    My legs swell when the temperatures rise so I had to embrace the fact that I want to enjoy my holiday but not risk my lymphie legs. The risk of cellulitus, cuts, bites..

    I wore my compression on the beach, I brought crocs to protect my feet and ensured my sunblock was applied.

    Will get back to you later re scuba diving.

    Best wishes x

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