Introduction
EIAE is the medical acronym for exercise-induced arterial endofibrosis, a fancy and medical-sounding way of saying “there’s something thickening the wall of the artery bringing blood to your leg and we think you caused it by riding your bike too much.” This is also sometimes called iliac artery compression, a similar name that specifies the artery (iliac) but not the cause of the compression.
I’ve mentioned this issue before, but I have learned some things since then, and I wanted to keep a record for myself and share with whoever might be interested in what it’s like living with this diagnosis right now.
Symptoms
As I’ve described before, I’ll be riding along and go from a tolerable effort feeling to excruciating, agonizing fatigue feeling in a moment. My leg burns, not a cramping burn, but the burn of pushing super hard, but beyond anything I’d normally experience. Excruciating pain really is the only way to describe it.
It comes on when I’m trying to output a lot of power, like ride up a super steep hill or sprint to catch up with a faster wheel. It stops almost as soon as I stop the effort, but when I try again, it comes roaring back.
It also comes on when I’m tired from lots of miles. Riding many days in a row is almost guaranteed to get my leg into this state, so I can’t even ride flat and slow, let along hilly and frisky.
Diagnosis
After making my way from my primary care doctor to an orthopedic doctor, I finally ended up at a vascular surgeon’s office at Virginia Mason. The orthopedic doctor confirmed I didn’t have a bone or muscle problem, and in addition to referring me to the vascular surgeon, also scheduled me for a blood pressure test.
The test involved taking my blood pressure in each of my extremities with a super-sensitive ultrasound pen-thingy while I laid on a bed. This involved blood pressure cuffs covering my arms, legs, and even toes. Then most of the cuffs came off and I ran on a treadmill as hard as I could go until my leg did its thing — which took about 4 minutes. Then the technician measured my blood pressure again, comparing the impaired leg with my normal leg and with my arm.
The result confirmed that my left leg gets about 25% of the blood that my right leg does.
Next, I talked with the vascular surgeon. He did provide answers to pressing questions I had, specifically:
- Is this really EIAE? Most likely. The only way to tell for sure is a CT scan, but he could even hear the difference in circulation listening with a stethoscope, and of course looking at the ultrasound results.
- Will continuing to ride damage my leg? Sort of. The endofibrosis would likely continue to worsen, restricting the blood flow in that artery more if I kept riding. However, the body can build alternative pathways for blood to follow, ensuring that the muscles and leg aren’t ever so deprived of oxygen as to be dangerous.
- How much should I ride? As much as I can tolerate. But the smart path is to try to keep the pain to a minimum, since that means I’ve used up precious resources that won’t get replaced easily. Trying to optimize for endurance efforts that sit just below the threshold of inducing the pain is one approach; another is to do hard intervals that ride straight into the pain, then recover as much as I can. Also, remember that this is caused by repeated bending of the artery. Every time I ride my bike, I choose to bend that artery more, and potentially progress the disease more.
- Is there any treatment? Only arterial surgery. The surgeon, I must say, was quite optimistic about doing this surgery: he reassured me that another doctor in his practice had treated this before, and that doctor would assist, etc., etc. Guess that when you’ve got a hammer, everything looks like a nail. (That said, I’ve heard about more and more pro cyclists getting surgery for this, and that bodes well for me. If I wait long enough, the risks of the surgery may come down and the success rate may improve. Right now, though, it’s a far, far too great of risk for the mother of a kindergartener to take for a hobby.)
The vascular surgeon told me that the next step would be a CT scan with some kind of dye to let them see where the thickening had occurred in my artery. Then the solution would be arterial surgery: Remove the damaged part and replace it with an artificial artery. Of course, he did acknowledge that there’s some chance of clotting or thickening around the replacement… and I might have to have follow-up surgeries to deal with other potential side-effects…
After some pondering, I opted not to do the CT scan. I already knew surgery wasn’t on the table (so to speak), and CT scans cost a pretty penny. Knowing more might be interesting, but it doesn’t change my treatment decision, so I skipped it.
Instead, I went back to strategize again with Dan Druckhammer, my PT. He made it clear that there’s not much left to do now except experiment with my training and see what I can tolerate and achieve within my new limits. No antinflammatory medicine, stretching, massage, or anything else will help mitigate the issue.
So I started a new training plan that accommodates my new leg reality, giving myself lots of time to rest and recover and trying to optimize the benefit of just a few days of riding a week.
Emotions
I can’t easily express the feelings of loss, sorrow, disappointment, anguish, frustration, resentment, and even shame I felt then and continue to feel. Although I can keep riding, each ride makes my leg imperceptibly worse. Imperceptibly — until I perceive it as pain, or maybe it’ll change to tingling, numbness, or shrunken, atrophied muscles.
As this has gotten worse over the last few years, I’ve taken my normal approach: work harder. Push through it. Cycling is about pushing through pain into that clean, bright space where you know you’ve just broken your own boundaries. Now I feel like I have an infinitely high, infinitely thick, infinitely long wall that I keep running up against. It’s in my leg and it’s in my head, knowing, waiting anxiously for the moment when my leg gives out, always holding back, never giving 110% anymore.
It feels like a little death. Some part of me, the part of me that gloried in finally finding a sport where I excelled, is dying.
I feel resentment and bitterness: This only happens to 10% to 15% of all cyclists. Why me? Why my leg?
I feel shame and sorrow: When I’m riding and on hills I can’t keep up with people I used to leave in the dust. When I look at my average speed and know it was the best I could do, and a few years ago I would’ve scoffed at that puny effort.
I feel an ocean-deep sadness: This kind of riding has brought me dear friends, a whole community of people bonded through shared pain and joy, who I will lose when I stop riding at that level. I’m losing myself and a community and a way of thinking and a fitness habit almost 15 years in the making.
For my first two years at my job, I organized my company’s Bike to Work teams, gave out prizes, and sent out company-wide email updates on our progress. This year, I didn’t have the heart. I can barely ride. How can I find it in me to encourage others?
What do I do with all this? How do I carry on?
Response
This isn’t the end of the road for me. I spoke with the vascular surgeon in March. As time has gone by, I’ve gotten advice from friends and family, drawn strength from my faith, and come to a few conclusions. I have to change my recovery, my nutrition, and my mental state.
Recovery
One effect of having reduced blood flow to my leg: The left leg recovers much more slowly than the right leg. If I do multiple days in a row of riding, for example, the left leg will experience deep, painful fatigue even when I’m “riding easy” — able to maintain a conversation with full sentences.
This got me thinking about recovering, and if I could do anything to help my leg recover better after I’d ridden. So I read a book on recovery called Good to Go, in which the author reviews a bunch of different popular recovery methods and then discusses the scientific basis and evidence for the efficacy of each method.
To summarize, of all the methods she reviewed — including things like massage, compression clothing, heat, cold, various foods and drinks, and more –the only really scientifically proven methods of recovering are… drumroll please… sleep and time actually relaxing and resting.
Other recovery methods that help you feel relaxed, like getting a massage, using foam rollers, taking a hot bath, sitting in a sauna, etc., can help too — not because of some direct impact, but because you’re relaxing. And that actually does directly help with recovery.
What I’ve Changed
I’ve cut down to only three days a week of riding. This choice comes hard: I’m used to riding five to six days a week, with some longer stints during the season. When I first started working downtown, I commuted home four days a week, then joined a long group ride on Saturday, and maybe did a “little” recovery ride on Sunday.
Now I’ve rearranged my riding schedule to give my leg more days to recover between each hard effort. For the time being, I’m commuting from work two days a week, Tuesday and Wednesday — some Wednesdays I do extra miles to get a few bonus hills in; then resting on Thursday and Friday, and joining a long group ride on Saturday. On Sunday I take a nap.
Nutrition
Because I’m riding fewer days and, ultimately, fewer miles, I know I’m not burning as many calories as before. I don’t think I’m as hungry… but I’ve struggled with anorexia in the past, and I’ve had a difficult time determining when and how much to eat.
I had reached a happy equilibrium with feeling comfortable with eating based on the amount of exercise I was doing, but with this dramatic change in riding, all those anorexic concerns have started bubbling to the surface again. I have started worrying about how much I’m eating, cutting out “bad” foods like the free M&Ms available in the kitchen at work, and trying to skip snacks and ignore hunger until the next big mealtime.
To help address this, I visited the nutritionist I worked with years ago, Emily Edison. I always end up crying at visits with her, and this remained true, but I also took away some helpful reminders:
- When I’m thinking about food, ask myself: “Am I hungry? Is this what I feel like eating?” If the answer is “yes,” go for it. I may not need to eat the same volume I did before, so eat slowly and focus on listening to my body’s real hunger signals.
- When I’m resisting eating, ask myself: “Do I feel I shouldn’t eat this?” Am I avoiding eating out of a sense of guilt or not deserving to eat?
- There is no “bad” food, just whatever I’m hungry for. Do try to focus on snacks and meals that includes protein, fruit/vegetable, and carbohydrates.
- Shoot for the six-eats-a-day routine: Breakfast, snack, lunch, snack, dinner, and maybe a snack.
As a side note, this makes me realize that maybe I’ve just been using exercise to self-medicate against anorexic thoughts all this time anyway. But this experience is making me think I haven’t actually addressed the underlying issues well enough to put it completely to rest. Anorexia is always the way I’ve managed stressful changes in the past, and it’s seductively easy to go back to it now, especially since this stress comes from changes to exercise — which is closely tied to eating, health, and my anorexia brain.
What I’ve Changed
This is a work in progress, but I’m reminding myself daily about making healthy food choices and working had to listen and not disregard my body’s hunger — and to listen to when I’m not hungry, too. It’s easy to nibble at work. I am working to choose to eat.
Mental
Emily reminded me that lots of people lose their sport every day. It’s a process of mourning, of letting go of something that has defined me for so long. I haven’t completely lost my sport, but I do have to accept that I won’t be racing up hills and claiming Strava’s “Queen of the Mountain” prize anymore — and then doing it again the next day.
With my leg issue, I’m not the cyclist I was ten years ago, or even three years ago. In 2011 I was the first female finisher on High Pass Challenge. In 2016 I finished RAMROD as the second female finisher. Now, I’m not sure I could do RAMROD at all, and certainly not that quickly. I struggle to keep up with guys riding 22 mph even when I’m drafting, and I can’t pull at much more than about 18 mph.
This is my new reality. Emily also reminded me that the fastest way to get beyond my sense of loss and mourning is to go through those feelings. Accept them, acknowledge them, live with them as long as it takes.
What I’ve Changed
Meanwhile, I’m also changing how I think.
- Accepting limitations. I’m trying not to compare myself now to myself in the past, or to other people. Instead, when my leg starts to hurt, I adapt my riding: I back off, go slower, try to spin and breathe.
- Practicing thankfulness. When my leg hurts, I tell myself, “I’m thankful that I can ride at all.” I think about what a beautiful day it is, how grateful I am to spend time with my friends, and that I’m still biking. Instead of dwelling on what I can’t do, I think about and am thankful for the what I can do.
- Change how I think about this. Instead of thinking about this as a super-unlucky/unfair circumstance, I’m trying to focus on what I get to do with that other time. If I leave work at 4:00 pm and take a bus home instead of biking, I usually get home earlier, and I don’t need to take a shower or get un-biked. That’s more time with my family, days we get to play and eat dinner together. If I take a day off of riding, I can use that day to do the weight training and body-weight exercises that are crucial cross-training for keeping bone density up, and that I always neglected because I was too worn out from riding.
None of this is what I’d choose for myself. But when do we ever choose to grow? Growth comes from suffering. Indeed:
Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let ]endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.
James 1:2-4