Ehlers-Danlos hyperflexibility, fitness, and pregnancy

Growing up my mom and I thought my dad was really inflexible. I mean, I could put my feet behind my head and my mom could almost palm the floor with straight legs as an adult (which I can still do at 34 years old too).

I only found out while practicing jujutsu that my flexibility is not normal. It kind of freaked people out to suddenly have a foot appear in their face. I found a clinic that specializes in connective tissue disorders about 10 minutes from our house and, after some research on my own, decided to make an appointment.

Ehlers-Danlos Syndrome (EDS), hypermobility type. It’s mild for me, but I passed the screening for it. I also experience gastroesophageal reflux, some digestive issues, and thoracic outlet syndrome. Relatives who are also hypermobile experience arrhythmia, a heart murmur, Gorlin’s sign (touch tongue to nose), early onset arthritis and fibromyalgia, and stretchy skin. (I realize that all of these may not be directly related to EDS in every case, but they are associated with the condition.)

As far as I know no one has any serious symptoms–no disability in childhood, no serious cardiovascular issues, no pregnancy problems–so I count our family as lucky that way.

From bookish kid to grad school athlete

I was an inactive kid. Books held my interest more than sports since I didn’t particularly care to socialize with my peers and I showed no talent for athletics of any sort.

In undergrad I took an interest in cycling since it was my main mode of transportation. By the time grad school came I had purchased a road bike and rode in a few organized rides, the longest of which was 75 miles. I hoped to complete a century (100 mile ride) someday.

Enter Japanese jujutsu. I grew up roughhousing with my older cousins for fun. If I could find willing participants that continued into adulthood (always in a friendly manner). One of my grad school friends, a long-time practitioner of aikido and one of my primary targets, encouraged me to try jujutsu. He though it would be a good fit. In 2009 I finally did. He was right.

A couple of years into jujutsu I found that cycling inhibited some of the more explosive components of jujutsu. It was no contest. Throwing people across the room and flipping end over end was more important than riding around the countryside for a few hours. I gave up long-distance biking in favor of weightlifting and indoor bike sprints.

This was all before I knew EDS existed. I sort of back into things in my life a lot of times. Dating Jeff and joining a Catholic church are two more things I backed into, for example. Those are separate posts for a different day.

I knew my joints were bendy and I knew my mom had joint problems. I don’t want joint problems. If the connective tissue doesn’t limit my range of motion, then my muscles will have to stabilize my joints instead.

How I protect my joints

My methodology for protecting my joints is pretty simple: lift as heavy as I can with proper form and avoid moving joints beyond the normal range of motion. Accomplishing that is not as simple.

Enlisting help

I started lifting weights with Jeff in 2010 and started working with a (very excellent) personal trainer in 2011. Of course my trainer instantly recognized my hyper-flexibility and built my training programs around that and my goals. He and Jeff helped me recognize the limits of normal range of motion. Strangely, my migraines and gastroesophageal reflux almost went away for the years I lifted heavy 5-6 days per week. I can’t say for sure if there is a causal relationship, but both came back when I was no longer able to keep up with that level of activity. Mighty suspicious.

The trainer gave me a good spectrum of total-body strengthening exercise and a handful of repositioning and supplementary exercises to train my body to physically work as well as possible and minimize my risk of injury. Building a solid core was key to everything. I couldn’t do anything safely if I over-arched my lower back or hunched my shoulders. The core does not move. It doesn’t do sit-ups, it doesn’t do twisty things. It just holds in my guts doesn’t move while everything else does.

When done properly, the major exercises rely on bones to hold the weight up and muscles to move the bones. For example, your knees shouldn’t stick out past your toes when your squatting. That makes the soft tissue in your knee responsible for holding your knee together. If your knee stays over your foot, both front to back and laterally, the joint is properly stacked to transmit the weight of your body and whatever external weight through your bones and the muscles can do the work of moving the weight. Above your hips, nothing moves and all the natural curves of the spine (i.e. neutral spine) are maintained.

Pre-pregnancy fitness (I miss you)

If I do something, I tend to do it with both feet in the deep end (ahem, three sets of twins). Before my first pregnancy I lifted 5-6 days a week and practiced jujutsu for two hours 3 days per week in addition to my job or school. Despite hypermobility and the extra physical organization it took to, say, hold my arms on to my body so the weight in my hands didn’t pull my shoulders apart, I worked up to 235 pound deadlifts, 205 pound back squats, 155 pound front squats, 45 pound single-arm rows, and 45 pound single-arm chest presses. Pretty respectable for someone who weighed around 145 pounds, give or take a bit. While I still *could* bend a bunch, I didn’t have to. I had the strength and body sense to move normally.

My trade off for having kids

EDS adds an extra layer of complexity to pregnancies and postpartum because of the importance of fitness in protecting my joints and the potential for me to get into positions most people can’t. I am also acutely aware that I may not know for years the full extent of the wear and tear that pregnancies put on my body.

Twin pregnancy #1

I was very careful during my first pregnancy. I didn’t do much weight lifting. I probably spent too much time on IVF boards reading about all these women who were traumatized by the experience. To be fair, most people who use IVF have a much rougher go of it than I did. Everything was high stakes for them and they wanted to do everything correctly to have a healthy pregnancy.

It turns out I’m really good at staying pregnant and making healthy babies. Across three pregnancies, I never went into labor on my own and had no complications. I’m sure I could have done more physically and everything would have been fine.

Therein started my cycle of pregnancy-recovery. If I’m not pregnant, I’m recovering from being pregnant. I’d like to lessen the recovery necessary. It’s hard to exercise during pregnancy. Oh so hard!

Twin pregnancy #2

I swore I’d do more during the second pregnancy. Then all the first trimester morning sickness and fatigue hit and I though I was really dumb for thinking I could do anything besides exist and try not to fall asleep at work.

By second trimester I had deconditioned enough that my usual activities were much harder.

Third trimester? Forget it. Can’t see my feet. Abs don’t meet in the middle anymore. Carrying 30 extra pounds or more, almost all of it in the beach ball stuck in my abdomen. Oh, and squished lungs such that I’d pant through the limited options for exercise that I had left. Ouch! I almost forgot the babies that flip around until a couple of weeks before birth. I don’t know how they have enough space.

Twin pregnancy #3

See second pregnancy. Really. I did the same darn thing. You’d think I would have learned. Or maybe I expect too much. Whatever.

Future pregnancies?

Yes, there will be more. I can’t say for sure how I’ll handle it since I’m not there yet. I hope to do more, just like I hoped the last two times. Stay tuned to see if that is the case. I’m working on designing pregnancy workouts for the different stages of pregnancy. Maybe if I have a workout in hand and don’t have to think I’ll be more likely to do something… anything active. Watch for those workouts here in the next couple of months.

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