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Mar 12, 2011 10:07PM
First of all, do see a PT who specializes in lymphedema. You'll get lots of information and support and learn how to do things you want to do. It will put your mind at ease, too, once you have more knowledge and know what to look for and how to deal with anything that does arise.
One thing that's really important is that at the first sign of LE, get to your therapist -- don't wait until your arm gets severely swollen. Your therapist can give you a number of things to be aware of that are signs of LE and can also give you some exercises and breathing exercises that help keep lymph. fluids moving so they don't build up. Mine also taught me self-massage for LE. She gave me a huge amount of information, and all of this really helped me feel better and more in control.
I was terrified of flying but my PT felt a sleeve was unnecessary -- there's no research to support that flying triggers lymphedema, although some women do develop it after flying -- but now they're thinking it's not from the elevation change but from the salty snacks, lack of fluids, and lack of movement, when flying, and she gave me guidelines to follow. So far I'm good. But some PT's will want you to have a sleeve so go with what's recommended for you.
I had 17 nodes removed and was told not to lift anything over 30# ever (so far I mostly haven't) and don't do something repetitive all day (or for hours at a time), but otherwise I can do what I like -- with some caveats. For example, I shoveled snow all winter this year. Weight lifting can be done but I started out very light and slow (and there is some research that shows that exercise that will help you strengthen that arm is beneficial -- my PT was in great support of my doing this). I asked about using an elliptical (with repetitive arm movements) and my PT thought that was a terrific idea, just to start out slow and build up. So although doing something repetitive all day day after day may be a danger, that isn't the same as doing something for a relatively short time each day, like with most exercise. For example, I lift small weights, but I do a variety of exercises with them, and so far 20-25 reps per exercise, so not really the kind of repetition you've been warned against.
If you've had lymph nodes removed, you're always at risk, but they don't know what all the pieces and parts are that make one women develop lymphedema and another, not. I was told since I didn't have radiation under my arm (only had it on my breast) that my risk was low, even with all the nodes I had removed, but again, no one really knows for sure, and I'm staying aware and careful, but I also live my life.
Again, see a PT and follow what makes sense to you and your PT -- all I can pass on is what I was told but some PT's have a slightly different take on things and yours may tell you something slightly different. Most of all, try not to let the worry dominate take too much of your energy (seeing a PT will help a lot with that). Many women never develop lymphedema; we just all need to be aware and vigilant and follow some basic guidelines. Best of luck to you.