[Debbie L.]

Hi Alice,

Good question. There is not a lot of evidence-based research on lymphedema. Historically, lymphedema did not get much attention or recognition, especially in this country. That is changing but like everything - change is gradual. Long before the medical world was paying attention, the NLN (national lymphedema network - lymphnet.org) WAS paying attention and they did amazing work to support those with lymphedema and to push for research. I recognize and appreciate what they did.

However. In an attempt to educate, they published advice and information about lymphedema that was largely anecdotal and not always true. Or more accurately, not always proven with good evidence to be true. Some of those edicts remain, because we (the big societal "we") do love to think that we have answers. Some remain because therapists cling to what they were taught many years ago and they, too, love to think that they have answers. Some of the edicts-without-evidence probably WILL be proven to be accurate. Some will be proven inaccurate.

To further muddy the waters, each arm is different. What reallly sets off my lymphedema may not bother yours at all, and vice versa.

So far, for example, two of the traditional "triggers" of lymphedema - repetitive motion and airplane travel, are not holding up to scrutiny. Studies done on dragon boaters (there's no motion more repetitive than rowing) are showing no increase in lymphedema. Studies on careful resistance exercise are showing a decrease or improvement in lymphedema. Regarding plane travel - the few studies that exist are not showing much. Problems after plane travel may be more related to lack of movement and perhaps unaccustomed lifting, if anything.

I'm taking a long time to answer your question. I'm going to give you the advice that I think makes the best sense for anyone who is concerned about any activity or occurrence that could affect lymphedema. First, if you already have lymphedema, you need to be even more cautious than those simply at risk for it. But the same basic advice applies to all of us who have had lymph nodes removed.

1. If you have not previously done so, schedule a visit with a certified lymphedema therapist for a baseline assessment and a demonstration of proper technique for the gentle massage to stimulate lymph flow. You should also receive basic education at this visit, and learn some exercises to stimulate lymph flow.

2. Armed with above information and course of action, approach anything new that might be a lymphedema trigger with caution. Do not automatically BAN the activity. But start it very slowly (in this case, perhaps a few minutes in the hot tub, with arm not immersed). Pay close attention afterwards, and do a small drill of exercise and massage to stimulate lymph flow. If you notice that your arm seems affected (tightness, burning, heaviness - it does not have to be outright swelling), increase your level of alert and repeat the exercise/massage drill. If it does not settle down quickly, it's back to the therapist and probably taking that that activity off your list. But most of the time, you'll find that you're able to try it again and do a little more the next time. And the next time. Etc. Trouble comes when the first time, you go all out. Or when after the first mild symptoms, you ignore them and let them worsen before seeking help.

3. If you are overweight, be more cautious - you are at a higher risk of developing lymphedma. If you can lose weight, you will reduce your risk of lymphedema.

4. Over time, you will learn what works for you and your arm, and what doesn't. You will learn which bits of the massage drill and which exercises are of the most help to your arm when you've overdone it. These details will be different for each of us.

At diagnosis, I was inordinately concerned about developing lymphedema. I did develop mild lymphedema. I had a great therapist who had no edicts. She told me the things that might be triggers and gave me the above advice - start anything new slowly and paying close attention. Advance time and/or effort cautiously, paying close attention. But she didn't tell me there was anything the couldn't be tried.

Over the years, I've become closely in tune with my arm's issues. I know what works when it is annoyed, and I usually can predict what will annoy it. I paddle my whitewater kayak and I skate ski - two fairly strenuous and repetive arm motions. Afterwards, I have little drill of massage and stretching. The more I use the arm, and the stronger it becomes, the less it complains after activity, but it always complains a little. One of the worst things for my arm is actually at the other end of the spectrum - things like sitting in a formal meeting or conference for hours, where I can't move the arm about without being disruptive. That lack of motion does it every time. I've learned little tricks like discreetly reaching up and behind my back, appearing to scratch my back or grab a sweater sleeve (less disruptive than waving the hand above the head, which is what works the best). For my arm, a simple twisting/wringing motion helps a lot, if I remember to do it. That's pretty discreet. Now, I don't even have to consiously remember to keep the arm moving - it's an autopilot function. But early on, I'd be hours into a meeting when I'd realize there was swelling, and then of course it's harder to get it under control.

This is probably FAR more than you wanted to hear. I get carried away on this subject. Lymphedema was one of my weird fears (obsessions?) at diagnosis. I even took a course to become certified as a therapist, a few years after diagnosis but it turned out that although RNs can be certified, they cannot bill for their services, a crazy catch-22 imho, and I rarely got to practice my skills. That was in 2003 and I don't feel current anymore, although if they changed the reimbursement rules, I'd consider repeating the training. See, there I go, rambling again.

Debbie Laxague