My Personal Journey with Lymphedema and Exercise (presented at the Feb 27, 2016 NWLC Self Care Class by Jen Boyce, OTR/L, CLT, breast cancer survivor, lymphedema patient)
After my double mastectomy and axillary dissection, I had trouble regaining my shoulder range of motion so was referred to a physical therapist who also happened to be a certified lymphedema therapist. As I was high risk for lymphedema given the axillary dissection and planned radiation, my therapist taught me MLD, got me started on a home exercise program, and recommended I purchase a sleeve for air travel. I was scared of getting lymphedema so I did MLD religiously, every night, along with my theraband exercises. My therapist explained that keeping my arms accustomed to exercise would make it less likely that I would overwork my lymphatic system in the future, to the point of developing lymphedema. I also began walking every day, slowly working myself up to 30 minutes a day.
About six weeks after I finished radiation, I had resumed running a few days per week and over the holidays we went cross country skiing a few times. One night, I was brushing my teeth and noticed a feeling of jiggling under my arm, close to my armpit. Upon further inspection, I noticed some swelling in my armpit and one side of my neck. Right away, I knew I had lymphedema. I think the increase in exercise intensity (running and skiing) tipped me over the edge. I quickly returned to my PT, had some MLD sessions and began wearing a compression sleeve, gauntlet and vest for exercise.
This began a period of figuring out a new way of life in terms of exercise and use of my arms for strenuous activities. Initially I was thinking I just had to be careful when I ran (not to increase mileage too quickly). Over time, I realized there were several things that tended to flare up my lymphedema symptoms: heat (especially in conjunction with exercise), hot baths (my favorite!), any type of aerobic exercise (hiking, stair climbing, cross country skiing), repetitive use of my affected arm/hand (washing windows, typing, lifting/pulling, weeding, or vacuuming), yoga (weight bearing on my affected hand), and massage. Before I understood the physiology of lymphedema, I mistakenly asked my massage therapist to massage me everywhere but my right arm. This wasn’t good enough a massage is like exercise in terms of moving lymph and even without touching my affected arm, my symptoms worsened after the massage.
Regarding my running, it has been much trial and error. I was always conservative in adding mileage so I didn’t think it would be much different with lymphedema. However, I found I could no longer get away with adding mile per week when I was training for a race. I had to decrease to 2/10 of a mile weekly or I would pay the price with increased swelling. Initially, any time I would have a flare, I would panic, increasing my MLD to up to three times per day, and returning to my lymphedema therapist. Despite lymphedema, I finally reached my goal of running a half marathon last spring. What used to take me about four months to train for, now took me seven months.
Another challenge I ran across recently was how to wear my compression glove with ski gloves. My ski glove was too tight to wear my compression glove under it; it actually caused terrible pain in my fingers. Since my ski glove was snug, I thought I could try wearing just my ski glove. After only an hour of skiing, I was shocked to discover my hand was all puffed up, which lasted for several days. Next time I tried wearing my husband’s larger ski glove with compression underneath it and that seemed to work. Trial and error.
The only activity I have pretty much given up is rock climbing the combination of using my hands, having to wear compression and all the cuts and scrapes that come with it, seemed too risky for me.
Exercise is important for lymphedema but I can see why there was a period of time where it was taught it was harmful. Anything that increases your heart rate or taxes the limb, increases lymphatic flow. If you have a problem with your lymphatic system, this may mean swelling which leads some people to think that exercise is HARMFUL. However, research now shows that exercise is beneficial for people living with lymphedema.
2 thoughts on “Exercise Makes a Difference: A Personal Journey by Jen Boyce”
I have leg lymphedema in both legs. I am not sure how to go about doing normal things when I can’t get into any shoes. I am depressed and horrified at all the many complications
I live in Florida and need a support group nearby if that is possible
I live in Hernando Co FL
I’m so sorry you are going such a challenging time. I’m also sorry I haven’t responded earlier. I know LE&RN (Lymphatic Education and Research Network) has a chapter in Florida. Here is the link. Hopefully they can direct you to support.Florida LE&RN Chapter
I hope this helps.