Jim Miller has had lymphedema for over forty years, but doesn’t let that get in the way of leading an active lifestyle! He’s biked the coast of Oregon, participated in Bike MS, and now he’s here to share some tips on staying active with lymphedema.
First, I’m not a doctor; don’t play one on TV; and urge you to go see your own physician before undertaking any strenuous physical activity. There – the “fine print” is out-of-the-way up front.
Alexa asked me to put together a few tips for those of us (like Rosie who posts to “The Lymphie Life”) who insist on putting our lymphedema through some strenuous sporting events. Rosie just did a triathlon after deciding she wasn’t going to let her lymphedema stop her from getting out and enjoying life even more. A triathlon probably takes several hours to complete, depending on its length, and my 65-70 mile bike rides to raise money to fight MS often take 6 or 7 hours. You’re going to build up some extra fluid, but not to worry: we have ways of taking care of that.
Here’s some things I’ve learned about exercise with lymphedema:
- I have been told for years that regular exercise, staying fit, and maintaining a healthy weight are very important for managing your lymphedema. What I learned more recently is that regular exercise also helps keep your lymphedema from getting too fibrous, which makes it harder to reduce with compression wrapping.
- Strenuous exercise generates more lymph fluid so anticipate some extra swelling, especially after long events.
- Be sure you always wear your garment when exercising – whether light or more strenuous. Don’t even consider skipping it – the garment’s compression and its pumping action helps you get rid of the extra fluid.
- Heat also affects our lymphedema as we all are aware, so heat plus exercise will create some conditions we’ll need to manage after our event is done.
- If it is very hot, I liked the idea somebody posted on Alexa’s blog about wetting down your lymphedema limb. I did that after my first riding day this year and it was wonderful.
- Drink plenty of fluids while exercising, especially for those longer events. Keep your body hydrated and your lymph fluid watered down. I know it helps.
- Speaking of hydration, did you know Americans are as a rule 30% dehydrated? So when you go out and exercise you’re starting from a “negative” hydration status. I drink extra water for a day or two before a long, hot event like this month’s ride.
- After the event, be sure to set aside time and do your manual lymph drainage. You have to help that fluid get out. I got a neck/back massage after our ride and learned my masseuse was a certified lymphedema therapist. Had there been more time and privacy she could have helped with my MLD massage. So if you don’t do your own MLD, look for someone to help you.
- Oh, and one other little trick I learned last year while cycling the Oregon coast was to use what I call “spot wraps” to reduce swelling in specific areas. If my foot starts to swell after a few days of exercise (it did) I’ll take my Farrow Wrap foot piece, cut bits of white Comprex-Binde foam to fit over the ankle and across the top of the foot and snug down the velcro straps over night. Then I can be sure to fit into my cycling shoes in the morning. It worked like a charm this summer, too.
- Even with MLD and a good compression garment, there seems to be a residual build-up of fluid that, for me, takes about three days to show up. So be prepared to see more swelling. This year I just bit the bullet and wrapped my leg for a couple of days during the week following the long bike ride. Hey, we do what we have to in order to live an active life with lymphedema.
The National Lymphedema Network has some excellent exercise tips here: http://www.lymphnet.org/pdfDocs/nlnexercise.pdf
What tips and tricks do you have up your compression garment that help you manage your lymphedema under some special circumstances, like long or strenuous exercises?
Hi Jim! Awesome post and thanks for the nod! I’d been sick for a while so I when I noticed your post recently, it made me smile! I love that you wrote: “What tips and tricks do you have up your garment…,” LOL!
First off, if you would have asked me years ago if I ever thought about doing a triathlon, let alone an Olympic length one (yes, Jim, several hours long), I would have been like, “No freakin’ way!” But, I guess it wasn’t too much of a stretch since I always enjoyed being active physically, be it taking dance lessons, or playing sports throughout my life. What I was able to get from doing a triathlon was a sense of accomplishment that I had been needing desperately! In fact, to this day, I’m amazed that I was successful, in that I completed it.
It was never my intention to come in first place, or be competitive in that way. I merely wanted to prove to myself that having Lymphedema doesn’t make us a prisoner to experiencing and appreciating all that life has to offer us.
Just like my doctor for my LE said, “You’re a perfectly healthy lady, aside from having LE.” Sure enough, when I was training, my LE therapist, said, “Your measurements are down in pretty much all areas.” Also, Jim’s right, always wear your compression garment when exercising – a former LE therapist of mine was training with me and yelled at me (in a concerned way) when I said I didn’t have it on. “Go right home after the run and put it on!,” she said. I read somewhere that there’s a containdication for wearing a compression garment while swimming, although I didn’t know it at the time of my event. Luckily, I didn’t have any problems and was able to finish that first leg of the race, or the two others, thereafter.
I was concerned about the heat because my event was in Austin, Texas, in the summer, and I had been training in NYC during the winter. It started in the early morning, and it was surprisingly cool. It didn’t get hot I ran with a fanny pack that had water and a tube I could drink out of if I got thirsty during my run.
There were always people handing out water – which you could drink or throw on your head and car-wash type sprinklers which you ran through to keep you cool. I had a massage the day before the triathlon I did, which helped to relax me. When people – even complete strangers – are rooting you on, it’s an amazing feeling!
My tips and tricks: adequate rest is important for people with LE in general, but, even more so if you’re training for an event like a marathon, triathlon, or long bike ride. I remember my mentors and coaches saying that we had to drink enough water so our pee was clear, lol. Eating nutritous foods in bigger portions is recommended when training for an event – your body needs all the nutrients it can get to keep you going strong – you’re going to burn it off, anyways.
Also, bear in mind that ANY kind of exercise is important for maintaining your LE, even if it’s just walking or riding a bike around your neighborhood!
Kudos from another Portland person for sharing your
experience with lymmph management and exercise. I often neglect wearing my compression garment when exercising. But now your post is in my mind when I head out the door.
I was very active before lympedema and I will remain so! Thanks again for your tips!