My EDS body is acting like it’s opposite day

Mysterious shoulder tightness leads to additional pain for this columnist

Karen Del Vecchio avatar

by Karen Del Vecchio |

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I feel like my body’s done a flip-flop. Usually my right side causes me the most problems. I have a badly damaged shoulder, hip, finger, hand, and ankle, all on my right side. My left side is normally the “good” one, with only occasional flare-ups. In the past few weeks, however, while my right side is in its usual state, my left side has apparently grown tired of playing second fiddle, as it decided to flare up as well.

I could distinctly feel my left trapezius muscle start coiling into a knot as I stood in front of a group of parents on back-to-school night at the school where I teach. It was so random — I wasn’t doing anything besides standing and talking when I felt a twinge in the muscle. Over the ensuing half hour, it kept getting tighter until it felt like a golf ball had formed.

While it was happening, I kept thinking, “This is a classic Ehlers-Danlos syndrome issue — no apparent cause or reason, just my body going wonky.”

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The domino effect of shoulder tightness

By the next morning, my shoulders were so tight I could feel the tension in my forehead. For me, shoulder tightness radiates up my neck and creates a distinct type of headache. I used my shoulder massager and applied heat, but I felt only minimally better.

Because my left side was so sore, my right side began to worsen as well. I usually offload some right-handed tasks to my left to give my damaged hand and shoulder a break, but with this pain, I couldn’t do that.

I can plow through just about any type of physical pain, but headaches for me are the absolute worst. I can walk with barely a limp when most people would be on crutches, and I can power through farm chores even when my right arm can barely move. But give me a headache and I just want to curl up and take a nap.

It seems ridiculous to me, since the pain level of my other injuries and issues is worse, but for whatever reason, I don’t handle headaches well. And when my head pain stems from shoulder tightness, it won’t go away until I can get a massage. Tylenol helps, but I wind up counting down the days until my next bodywork session.

I used to get frustrated when my Ehlers-Danlos syndrome would flare up without reason, but I learned a long time ago that this only makes things worse. If I get upset, I add emotional discomfort to my physical discomfort, and these can exacerbate each other.

Instead, I do my best to acknowledge that yes, this sucks, but at least I know how to get relief, even if it’s not immediate. Then, I manage my pain as best I can until my shoulder tightness eases. It’s not a perfect system, but it’s the best I’ve found for me.

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.


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