Understanding why my symptoms of EDS included breathing problems

I remember wishing the final whistle would just blow. I wasn’t sure how much longer I could force myself to keep running while being unable to breathe.

I’d already run to the sideline for my albuterol inhaler several times, but I was still struggling. It was a big game, the score was close, and we had to hold on until the end. I’ve always been a fierce competitor, so there was no way I was backing down.

When I finally heard the signal that the soccer match was over, I remember collapsing on the ground and getting sick. My chest was heaving, and I felt like I’d never get enough air again. After several more rounds of hitting my inhaler and lying on the ground, my breathing finally began to normalize.

Asthma was my nemesis from about 10 years old to my mid-20s. I had no clue until my Ehlers-Danlos syndrome (EDS) diagnosis that the two were likely connected. Many of us with EDS also have asthma and other complications. The soccer match I described happened when I was about 16, but I wasn’t diagnosed with EDS until I was 22.

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Before my diagnosis, I battled sometimes crippling exercise-induced asthma and myriad other injuries I now know were a result of my EDS. While medication helped, I still had asthma flare-ups and attacks almost every time I played, although some days were worse than others.

There were also times when my meds didn’t seem to work. I would be audibly wheezing, but an asthma test on a treadmill that elicited the same symptom didn’t show asthma. So what was going on when that happened? The doctors were stumped.

After my diagnosis, I began physical therapy and massage work. One day, after several biweekly sessions, I rolled over on the massage table after my therapist had worked around my ribs and on my thoracic muscles. I took a deep breath and it felt like my air capacity had doubled. I suddenly realized that the muscles around my rib cage had been tight for so long, and I wondered if they were preventing me from taking full, deep breaths because my rib cage couldn’t fully expand.

After that lightbulb moment, my therapist made it a point to work on those muscles regularly. Since then, while I’ve had an occasional issue with asthma, I haven’t had another episode of wheezing.

There’s no doubt I have asthma, and I’m lucky it has calmed down after I reached adulthood. But I wonder if the extreme tightness of the muscles around my rib cage exacerbated my symptoms when I was younger.

Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.