Returning to school triggers my all-too-familiar EDS knee pain

As I stood in front of the new students during orientation last week, I tried to ignore my aching knees. Faculty and staff were lined up on the basketball court, where we took turns introducing ourselves to the freshmen and transfer students joining us this year. I tried to stand quietly and not be a distraction, but the pain in my knees made it hard not to shift my weight around.

Finally, introductions finished and I went back to my office — where I grabbed my water bottle and notes and headed out again to do rotating presentations that would have me on my feet for the next hour.

I’ve been back at the school where I teach for a few weeks now, and while my return always involves a physical adjustment — more sitting, different shoes, change in routine — it doesn’t usually bother my joints in this way. I’m used to being on my feet a lot as I do farm chores, but at school, I’m standing on a concrete floor instead of on grass and dirt, which provide more give.

It’s a joint pain that I’m familiar with, though; I knew immediately that it was caused by my Ehlers-Danlos syndrome (EDS).

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Evolution of pain

For most of my life before my EDS diagnosis at age 22, I had knee pain. The condition means my joints are too loose, and to compensate, my body often tightens the muscles around my joints to provide some stability. Unfortunately, that’s part of why my muscles are always tight.

My knees hurt constantly throughout high school and my sports career, even if I wasn’t injured. I didn’t learn why until I started making progress in physical therapy after my diagnosis.

Another way my body dealt with hyperflexibility was to balance in any way possible — which meant that I often balanced on the bones in my knees rather than the structures around them. I can see this in an old home video of me learning how to walk.

After my diagnosis, I had to relearn how to walk properly to minimize the damage to my joints — and for the first time in my memory, my knees didn’t constantly hurt. After many years, this “new” way of walking has become routine, but sometimes when I’m sore or tired, I’ll revert to old habits and pay for it the next day with sore, aching knees.

Being back at school has been great, but it’s clearly also been tiring. I’ll have to be careful and watch my walking mechanics so that I don’t accidentally slip back into old habits. I want to start the school year as healthy and strong as possible!

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.