Topic: should i be concerned

Hi, Kerry, and welcome!

Sorry for your "swell" concerns. You should definitely call. Lymphedema (LE) in the arm is only rarely painful, and generally redness would indicate an infection rather than just LE. So your primary symptom of your arm being bigger has a good chance of indicating LE.

You'll want to insist on getting help right away, because LE is unfortunately more than just a big arm. The stagnant lymph fluid that makes it swell is protein-rich and very nourishing to bacteria, so serious, systemic infection is one danger which can be reduced by proper treatment. Also, LE is staged, just like breast cancer is, so if it goes untreated it will progress. The progession is not measured simply in increased size, but in the condition of the tissues inside your arm. The stagnant lymph leads to hardness of the tissues (fibrosis) which can further damage the lymph system and can cause muscle weakness and loss of range of motion. Most of us have not been told about this by our doctors, so it all comes as a bit of a shock. In fact, for some of us our doctors have dismissed the dangers and suggested waiting awhile before seeking treatment, and we've had to insist or find another doctor on our team to write the necessary referral for evaluation and treatment.

You'll need a referral to a well-trained LE therapist. That means someone who has had at least 135 hours of specifically LE training beyond her/his PT or OT certification, and at least a year's experience treating LE. Be sure and call before you go to make sure, as currently no state has legislation in place to assure adequate LE therapist training. You can find a well-qualified therapist near you by following the links at the Therapist Locator here: www.mylymphedema.com

Your therapist will take a medical history and do a physical exam (including arm measurements) to make the diagnosis. If she determines that you have LE she'll set up appointments for treatment, which involves at least a couple of weeks of daily massage and wrapping, as well as learning to do special exercises, and skin care to prevent infection. During that time she'll instruct you in doing the massage and wrapping yourself and fit you for a compression sleeve and glove, so when the therapy ends you'll have the skill to keep everything in control.

Until you can get to a LE therapist, here are some things that might help. Keep your arm elevated as much as possible during the day, and on a pillow at night. Try to avoid much activity with that hand and arm. Avoid cuts, scratches, burns, insect bites, even paper cuts, and keep your arm and hand well moisturized with a good lotion. Use a topical antibiotic at once if there's any skin break. Heat will make it worse -- hot showers or baths (warm is fine), hot packs, hot dishwater. A tight, long-sleeved leo or sports shirt, preferably in a size smaller than you'd normally wear, might help prevent further swelling. Wear it inside out to avoid the seams pressing into your skin. Hopefully others will be along soon with suggestions I missed.

Sorry to be so long-winded, but it can be hard to find good information about LE, and it matters to your outcome. For more information about therapy and therapist training, see the Position Papers at the National Lymphedema Network, www.lymphnet.org.

Kerry, I hope some of that helps. Please keep us posted on what you discover.

Gentle LE (((((hugs!)))),

Binney