My physical therapist (PT) warned me that my arm could swell at any time and that I would probably never know what had caused the flare up. Thinking that after a few months of regular manual lymphatic drainage massage (MLD) and strict compression bandaging I was all cured, I dismissed her warning.
My lymphedema had developed due to a mastectomy on my right side followed by radiation treatment, a few weeks after which, my arm started to swell. It was slight at the beginning, but soon it became heavy, unattractive and quite a source of bother. At first, it started limiting my clothing options, then it affected the use of my arm and my sleep. Soon it got to me emotionally and psychologically.
Fortunately, I soon found a PT trained in lymphatic drainage. She started treatment with MLD massage every day for three weeks followed by wrapping my arm in layered bandaging. I had to keep this on my arm for up to 20+ hours a day. This was then repeated every other day for another two weeks, and then twice a week for two more weeks until the swelling subsided and was almost back to a normal.
At that point, my PT asked that I pass by occasionally for maintenance sessions, recommended exercising and strongly advised lifting light weights. She warned though that the swelling would return suddenly because of a mosquito bite, humidity, hot or cold weather, or any other mysterious reason. She stressed that I keep to bandaging my arm.
But I was so happy with the results, I disregarded the warning.
For a while, I was able to control any little swelling that occurred in my arm by either resting it for a couple days, raising it on a pillow, wearing my compression sleeve, or placing my arm over my head whenever I could. During that time, I went on a low sodium diet, drank 2 liters of water every day, exercised and did weights for 30 minutes five times a week, and practiced yoga every evening. My arm never swelled once during this time. Unfortunately, I soon broke off this routine.
A couple of months later, I woke up one morning with my arm swollen more than usual. No matter how much I tried this time with the tricks above, I simply couldn’t unclog it. I visited my PT for a few sessions and bandaging. But the next day, the swelling would return. It was back to square one.
The truth is, this time, I didn’t keep my bandaging on for the required 20+ hours. I wasn’t exercising, and I was eating indiscriminately. I had thought I was done with this long, awkward, uncomfortable treatment. And I didn’t want to go through it all over again. I KNEW what I had to do, but I wasn’t actually doing it! The inconvenience persisted!
I went back to see my PT.
This time, she showed me how to apply self MLD massage which I now perform at least once a day. She also updated me on the right bandaging material and technique, pointing out that I have to replace my bandaging material (foam, stockinette, bandages, finger gauze) every 4-5 months depending on how often I use and wash them, as these lose their elasticity and competence. And she helped me pick my compression sleeve.
I now strictly adhere to 20+ hours of daily bandaging. I keep my arm moisturized all the time, and when it isn’t wrapped, I wear my compression sleeve while I carry out regular day activities.
In addition, I went back to a lowsodium diet and increased my water intake. My PT recommended deep breathing and advised me on exercise moves that stimulate the lymphatic system; I integrated those into my day again, especially right before I wrap my arm. And I started yoga again.
I also make sure that I regularly visit my PT for maintenance sessions.
The above regimen keeps the swelling in check and my arm functioning just fine! However, the most important lesson I learnt is that my lymphedema is primarily MY business. My PT can’t help me if I don’t help myself, and it is up to me to educate and update myself on related management tips. I also realized that once I accepted that my lymphedema is a lifetime condition, and that I myself have to do the work to self-manage it as a part of my daily routine, the whole matter became more manageable and less of a nuisance.
