Need help managing lymphedema in high altitude

scvmom65

Hi everyone,

I am very blessed in that I do not have lymphedema issues daily, but I do have triggers, my worst one being altitude. Well my family has planned a huge family reunion in the mountains at 7000 feet and I am not sure if I can do it but I want to try. In the past, without my compression garment I start having swelling and aching at about 5500 feet. So my plan is put my garment on when I leave the house ( I live at about 2500 feet) and hopefully being proactive will help, along with doing my pumping, etc and dry brushing. My question is, can/should I wear my garment at night? This is an entire weekend celebration so I would be spending 2 nights at that elevation. In the past if I forgot to wear my garment on a plane trip, I would wake up with the pain/swelling so I know my body pools lymph when I am sleeping. Any advice would be VERY appreciated!

carol57

scv, a compression sleeve gives a lot of compression and is designed to work when muscles are active. Our movement through the day causes muscles to push against lymphatic vessels, and the sleeve gives a firm surface to make sure that the muscle's pumping action works its best to move the lymph along. The sleeve is not designed for use during sleep, both because there's no counter-pressure from muscle action, so there could actually be too much compressioin--and because we might not be aware of a wrinkle developing in the sleeve, which could cause a little tourniquet effect.


Night garments work by pressing into the skin and creating little channels that direct lymph along with a lot less pressure than our day sleeves provide. They're more comfortable, too. Unfortunately, they're expensive. I can think of two brands that are sized for off-the-shelf use and cost less than custom: the caresia sleeve sold by Solaris and Biacare's arm sleeve. The biacare product has built-in hand protection and adds compression with a spandex oversleeve; the caresia does not (last time I checked) cover the had, and I think they intend it to be covered with a layer of bandages to take care of the hand and add some compression. Neither is free, but they're sold by the online vendors, so brightlife direct, lymphedema products, etc. The sites have (or link to) instructions for measuring yourself, and the products come in small, medium, large (not sure about extra small or extra large).

I have the biacare and find it works great for me, keeping my arm in good shape so I don't need to wear my sleeve all the time during the day. Before the biacare off the shelf night garment I used a custom fit (and verry pricey) solaris tribute, which I also loved. The biacare works just as well, and I went that route after insurance declined to cover a replacement for my worn out tribute.

And of course, another alternative is to use multi-layer bandaging at night, aka 'wrapping.' That is, if you have learned to do it and have the supplies.

Maybe other women here will have some better ideas for you. We sure don't want you to swell during a fun weekend with family!

scvmom65

Thank you Carol for taking the time to explain the daytime/nightime compression differences and for the recommendations!

Anna

scvmom65

Thank you Carol for taking the time to explain the daytime/nightime compression differences and for the recommendations!

Anna

Binney4

Anna, the trick is GETTING to a higher altitude. Usually once there your body will acclimate to the pressure change and you can manage your lymphedema in the usual manner (whatever that may be). After traveling to a higher altitude (wrapped, or with day or night garments) keep them on for a few hours (or until bedtime, if they're your day garments).

One problem with travel is the unusual activities that often presents--lugging suitcases, new activities or, especially at a family reunion, hefting toddlers. So be watchful for things like that.

Stay really well hydrated, do some deep abdominal breathing throughout the day, wash out your day garments every evening so they're clean and fresh, and be careful of sunburn and insect bites.

Oh, and have a GREAT time--anyway!

Please do let us know how it goes.
Binney

scvmom65

Thanks Binney! That gives me hope that once I get up there I got over a big hurdle. Plus, thanks for mentioning the deep abdominal exercises, I always forget that one!

Anna

scvmom65

Hi everyone,

I just wanted to post an update since I just got back for anyone out there who might have similar concerns. I had zero problems! I am SOOOO happy! For the first 3 years after my surgery I was having daily discomfort with my arm, with some swelling episodes, mostly when I was forced to not move it much like in a long car ride. But far worse was elevation. I could never get up to 5500 feet without major swelling and needing to get decongestant therapy with a lymphedema specialist. After my last episode 1 1/2 yrs ago while doing the college tour with my son, I decided to take matters in my own hands since after 3 years, I figured I had given my body enough time. I am not sure if it is the combination of what I did or if just one of them did the trick but here are the 4 things I do: 1- I started working out my upper body with weights 2-3 times a week to increase blood flow to non blocked areas, I met with a personal trainer who specialized in lymphedema so I could learn what to do/not to do, 2- I bounce up and down everyday for 10 minutes to pump the lymph through the body, I bought a trampoline but it ended out hurting my knees so now I just do a jog/bounce thing on my carpet, 3- I dry brush my skin everyday before I get in the shower to move the lymph, 4- I get a chair massage once or twice a month at one of those cheap kiosk places and tell them to concentrate on my shoulder blades since that is one of the areas the lymph pools on me and I can't physically reach it . Of course meet with a professional before you do any of these things but I wanted to give hope to others. Also, I wore my compression garment as soon as I left my house and during the day while I was up there but not at night like the ladies above suggested. When I started going up the mountain, I was pumping my arm above my head every 5 minutes and did that several times a day everyday too, and did the pumping every 5 minutes going down the mountain. Good luck to you if you are dealing with a similar problem, hope this helps!

Anna

glennie19

Anna, so glad that the trip went well and that you have zero problems!  YAY!!

Binney4

Anna, brava! So glad the trip went well. BTW, I too gave up on the mini-tramp (hurts my ankles, takes up too much room in our crowded house) and bounce or jog for several minutes a couple of times a day--very helpful, and I can do it anywhere without the equipment.

Way to go!
Binney

glennie19

How about bouncing on one of those big exercise balls?  Would be easy on the knees and ankles.

doxie

Bouncing on exercise balls is a great idea! And sounds like fun. Too bad my cat popped mine.

I too did fine on a trip to higher elevation. I went hiking in Glacier National Park for two weeks. Was up and down in elevation by both car and hikes. Got achey on the longer plane flights, but arrived home without issues. I only wore compression on the plane. But wore a yummie bra when hiking since I primarily have truncal LE.

glennie19

oh, nice trip, Doxie!!  Glad it went well, LE wise!