Managing lymphedema on the ride

The question I get asked by others with lymphedema and by my family is usually, "How was the leg during all those miles?" To my friend Alexa, a student of literature in Vermont who has a wonderful and very honest, frank blog site about young people dealing with lymphedema Alexa's blog. And to my friends at the South Metro Lymphedema Support Group near Denver, and my therapist Jessica in Denver (who also rides bikes in summer and telemarks in the winter) and others with an interest, I'll say it was very manageable. The rash was the big deal on this trip, not the legs.

Note the "real" rain
jacket this time!

As noted earlier on this site, exercise and especially lengthy exercise like this generates more waste fluid from the cells which ends up being retained by those of us with lymphedema. And more swelling results. 

I brought all my "supplies" to help reduce any swelling by wrapping the leg if necessary. These are the foam and single-stretch bandages that the lymphedema community is so familiar with. I was prepared to take an extra day and do some wrapping if the leg wasn't doing well.

I was also planning to do some manual lymph drainage massage to help the fluid flow out of the legs and into the functioning lymphatic system. We do that pretty regularly (if we're being good about our self-treatments) whether we are exercising or not.

So how did it go? Very well, in fact. Yes, there was some added swelling of the "old" lymphatic leg but I'm pretty used to that after years of cycling. It was, in fact, the "new" lymphatic leg, on my right, that started to act up more noticeably. So I added a compression garment just for the right leg and the swelling went away. I had been able to "get away with" no garment on the right leg for most one-day rides, and did so on the first day. But, alas, that "new" condition is gradually progressing and I didn't want the swelling to thicken so wore compression for the rest of the ride.

I did massage two or three nights to help move fluid out of the legs. That's something we generally do regardless of our activity levels.

And after the third day of riding I found that my foot was more swollen and wasn't strapping into the bike shoe very easily. So on the drive to the next ride I compression-wrapped just the foot and brought the swelling way down and fit into the bike shoe just fine.

By now you know there were two days of riding in the rain. The big "soaking" day (see the post "The Art of Riding in the Rain") drenched everything. This reminded me how poorly our lymphedema garments "compress" when they're wet. Keep them dry, at all costs. On the second rain day they stayed pretty dry except around the ankles and I survived the day just fine

So, those of you with lymphedema, here's a few pointers to remember if you want to undertake similar activities:

1. Make sure it's okay with your doctor. But I'm afraid most doctors will tell you to stay home and keep your feet elevated. I say, go anyway (it's up to you), but go prepared and with an ability to remain flexible in your schedule.
2. Bring extra garments. They get wet. They don't dry out in a rainy trailer or tent or yurt or whatever your lodging might be on the coast, during a rainy week. Find a laundromat (we did, twice). You may need to switch out various dry garments.
3. Do your massage. I know, there are more fun things to do, and I didn't massage every night, either.
4. Bring your wrapping supplies if only to wrap a specific problem area (like my foot) or parts of a leg later (I've had my left leg wrapped to the knee for two days on the drive home).
5. Allow time for treatment by adding a day to your schedule. Our extra day, though, was given to curing the rash, not the lymphedema.
6. Certainly, don't make a major adventure your first attempt at pushing your lymphedema legs. Get to know how your body responds to the exercise and how your own leg (or arm) is going to respond as well. 
7. Enjoy yourself. Don't let worries about your lymphedema keep you locked inside. Unless you are prone to open sores and infections (that's a very different circumstance than my own and calls for much different management techniques) there really is a lot that you can do if you are aware, careful, and take it in smaller steps. I've been cycling for many years with lymphedema. In fact, my first certified lymphedema therapist, Lindsay Benson, who taught me all I know about massage and wrapping just 2 years ago, said my leg was still in very good shape (no thick edema) after 40+ years probably because of my continued exercise - cycling and skiing and hiking. Gunter Klose, a world expert on the topic of lymphedema who runs the Klose Lymphedema Clinic in Lafayette, Colorado, told me last year that I should continue to exercise in all ways as much as I can. "And keep your weight under control," were his parting words of advice.
8. Oh, yes, one more pointer: if you're going to bike the Oregon coast call me if you need a partner. I'd go back in a heartbeat.