I’m Hypermobile, and Trail Running Helps Me

Published June 29, 2023 08:32AM

There were years—decades, really—where I thought that, surely, someday I’d be told there was a reason why my body hurt so badly. “These pains can’t be normal,” I held in the back of my mind as I trained for the Los Angeles Marathon during my senior year of college. Distance running was new to me, but the stabbing pain in my back and hip didn’t seem like something all runners feel.

At 33, after years of managing weird injuries of all sorts through running, triathlon, volleyball playing, and adventure racing, I went over the bars on my mountain bike while my shoe stayed clipped into the pedal during an off-road triathlon. I finished the ride, then ran the four-mile course to the finish with an aching foot. Months of undiagnosed pain finally revealed that I’d overstretched ligaments in my ankle (during the crash) and, during the run, my cuboid had subluxated. Basically, I popped a bone in my foot out of place, and it hurt like hell.

I could go on listing injuries. We all could. All athletes deal with both acute pain and overuse aches that can become chronic. But as it turns out, there is a medical reason for why my body often feels out of whack. Why I have a dislocated AC joint in my shoulder but don’t remember ever hurting that shoulder. Why my son sitting on my lap with his weight more on one leg than the other would torque my hips out of alignment. Why, when I was 15, I hyperextended my elbow blocking a hard hit at the net while playing volleyball.

Maybe 10 years ago, at an appointment with an orthopedic nurse practitioner about a wrist injury that wasn’t healing, I showed her that I could bend my thumb back to my forearm on my healthy wrist.

“Hmm,” she said. “Can you pull your pinky up like this?” she asked. I did it.

“I’m really bendy,” I said. I started doing all the party tricks I’d pull out as a kid to make people go, “Eeeew!”: my hyperextending elbows, my double-jointed thumbs that pop in and out.

“You have Marfan’s,” she said quickly. I’d never heard of Marfan’s, and upon looking it up when I got home—something none of us should ever do with medical terms we’re told we have or think we have—I freaked out reading words like “damage the blood vessels, heart, eyes, skin, lungs, bones of the hips…” Volleyball player Flo Hyman died on the court from Marfan’s, as did NBA players Hank Gathers and Reggie Lewis. All three just dropped dead playing sports.

I measured my wingspan, something the internet told me to do, and found that I’m “+2.” My extended arms measure two inches longer than my height. (Hence, the volleyball blocking, and a penchant for racquet sports and swimming.)

After an apologetic call from my primary care physician about the nurse practitioner’s reckless “diagnosis,” and a visit with my doctor where he used what’s called the “Beighton Scoring System” to assess my joint flexibility, my diagnosis got downgraded to what’s called Ehlers-Danlos syndrome (EDS). “The Ehlers-Danlos Society” defines the “syndrome” as “a group of 13 heritable connective tissue disorders.” It continues: “Joint hypermobility means that a person’s joints have a greater range of motion than is expected or usual. This can lead to joint subluxations, dislocations, sprains, and other injuries. Joint instability can cause both acute and chronic pain and interfere with daily life.”

Honestly, reading descriptions, diagnosis, and ranging symptoms of hEDS, the hypermobility version of EDS and the most common (which, interestingly, affects women more so than men), I feel like I’m looking in a mirror.

Since being diagnosed, I’ve both felt validated and scared. But I’ve been pulling pieces together, managing pain, and learning to mitigate fear. I’ve paid attention to my body and have realized, thankfully, that trail running has always felt better for me than road running, and continues to do so. I believe that’s due to the varied nature of trail terrain, the strengthening of stabilizing muscles that happens with every step.

I’m aware that for the decade I was an adventure racer, changing sport disciplines often, gaining strength while wearing a backpack as I ran, rode, paddled, and climbed, I felt durable. I’ve noted that anytime I’ve tried to train for another road marathon—with the repetitive, linear motion of road running—I’ve blown something out and caused months of rehab, and depression that comes with a lack of doing what I want to do: run.

What is Hypermobility and What Can You Do About It?

Medline Plus, an information website created by the National Library of Medicine, says that “EDS” affects 1 in 5,000 people, while the National Health Information Service (NHS Inform) of Scotland states that joint hypermobility is estimated to affect “one in every 100 to 200 people.”

But aside from the diagnosed “syndrome,” a much higher ratio of the population may have what’s known as “hypermobility spectrum disorder.” And like anything with the word “spectrum” involved, that can mean a number of things: loose joints, undiagnosed pain perhaps from muscle spasms or nerve pain, a frequent feeling of being out of alignment, etc.

The good news for me, and anyone who feels they’re hypermobile, is that the treatment for both hEDS and hypermobility spectrum disorder is exercise.

“Motion is lotion,” says Dr. Dacre Knight, the Medical Director of the Ehlers-Danlos Syndrome Clinic in Jacksonville, Florida, which is part of the Mayo Clinic who I spoke with by phone one day in May. “Hypermobility itself is not a problem just outright,” he says, explaining that if a connective tissue disorder affects the body’s systems—like the heart and lungs—that’s when extensive screening and precaution becomes important. But, he says, “You could have some form of hypermobility that can potentially benefit from trail running.” He confirms my theory that trail running is good for me.

While he agrees that by incorporating more stabilizing muscles and mechanics than road running, trail running can be beneficial, it also comes with risks. Since people with hypermobility issues can be more fragile (my word, not his), the increased risk for falling can be hazardous. (If my son sitting on my lap, or my dog pulling too hard on her leash, can pull me out of alignment and create pain, a fall on a trail can, too.)

But when my hips or pelvis feel out of alignment, which happens semi-regularly and for no good reason and I get shooting pain into my glute and calf and sometimes into my foot, I have a fun fix. I run or hike the 1.3-mile trail with a 1,343-foot ascent up Mt. Sanitas a mile from my house. Afterward, I’m more aligned. The climbing seems to set me straight.

The benefits of trail running go beyond physical. With nature therapy being real, and being fully present and in the moment required to negotiate foot placements on technical terrain, trail running calms my anxieties.

“’Kinesiophobia,’ as it’s called,” says Dr. Knight, “which is fear of moving. It’s attached to these conditions.”

Anecdotally, and personally, here’s what happens: A pain arises, seemingly out of nowhere or from something minor that weI think shouldn’t hurt me. I create a story of despair and quickly picture months of not moving the way I want to, not running in the mountains, not spending trail time with friends or feeling like I want inside and out. Those fears create more pain, and that pain increases. I’m then afraid to move, to do anything for fear of making things worse, prolonging my inability to be the runner/athlete that I feel I am. Kinesiophobia.

Knowledge is Power, As is Movement

Thankfully, as I’ve learned more about hypermobility and paid close attention to what makes me feel good, I’m in a better mental and physical place than I’ve been in the past. I know that lifting weights, doing air squats and lunges once a week, doing CorePower Yoga once a week, hiking andrunning uphill, hiking with a weighted backpack, and varying movement with cross-training all make me feel better. Worrying about my “condition” or my pains at any given time does not.

On the suggestion of a physical therapist friend, I started doing CrossFit years ago and felt more durable than I ever have while I did it—until I’d push too far beyond my range and blow something out. I popped a rib out of place trying desperately to do a muscle-up. I torqued my wonky shoulder combining pull-ups with bench press. But I learned so many valuable lessons about strength, form, and what my own body needs that I’m forever grateful for the knowledge. Now I do my own strength training with all of what I learned in my back pocket. I do a lot of maintenance.

My running benefits from quality over quantity. I don’t run every day; my body tells me not to. I prioritize runs I really want to do—mountain trails, big climbs, great views—and allow recovery.

I have proprioceptive awareness. I pay very close attention to my alignment when I’m doing things like yoga, bodyweight exercises, and weight training.

Because hypermobility is hereditary (I’m certain my poor mom went undiagnosed and lived in pain and with anxiety), I’m having my very flexible, 15-year-old son assessed by a physical therapist and am awaiting an appointment with a genetics counselor. I’m hoping the knowledge I’ve gained will help him navigate his own journey through what might also be the hypermobility spectrum or hEDS.

And as Dr. Knight advises, “There’s a difference between just doing physical therapy and doing it specifically for hypermobility.” And so I’m on a quest to find the best care. Maybe he’ll join me on a trail run.

Personal validation is part of treatment, says Dr. Knight. And so is exercise. So, I’m taking what I know, and continuing to learn, feeling like my pains all these years aren’t me being a wimp, that when I feel fragile or like my leg is screwed on wrong to the socket of my hip like a Barbie doll out of whack, I have the tools to make myself feel better. Do the squats. Run uphill. Lift the weights. And yes, hit the trails.

If you feel you may have a connective tissue disorder of any sort, advises Dr. Knight, seek information. Avoid googling and self-diagnosing but know that information (like the Mayo Clinic’s microsite dedicated to the condition) exists. Seek out a knowledgeable physical therapist who can help identify if you are hypermobile and give you strengthening moves and strategies to create durability. And know that trail running, hallelujah, can help.