Ehlers-Danlos syndrome (EDS) is strange. Like many rare diseases, it’s unique to each person. For example, different types of injuries present variables in how a disease manifests. Since many of my long-term issues relate to specific injuries, I’ve learned to adapt to my body’s version of normal through various compensations. My shoulder is kind of the EDS symptom epicenter. A severe shoulder injury as a teenager, before my diagnosis, has led to a long battle with pain management and range of motion issues, plus years of rehab and physical therapy. More than a little ingenuity has been born from simply needing to make things work. What’s that old saying? Necessity is the mother of invention?
As mentioned in my last column, my shoulder’s range of motion currently is at about 40%, but since I spent years with less than 25% range of motion, I’m well equipped to handle it. I do a number of things that those around me never even notice. The tighter my muscles are, the more likely that my shoulder will sublux, so I’ll rotate my arm around like a windmill once or twice to help push it back to where it’s supposed to be. Oddly, that one range of motion never seems to disappear. Lifting my arm up from my side toward my head in an arc? Forget about it. Oh, and I don’t dare try to put my right arm behind me, either — that never ends well.
At physical therapy years ago, my therapist asked if I noticed what happened with my right arm when I was walking. I had no idea, so she asked me to walk toward the wall of mirrors and see what I noticed. I realized right away that my right arm hung limply at my side, and that it only swung slightly from the elbow. I’d unconsciously learned to compensate and protect my shoulder by more or less freezing it in place, because less motion theoretically meant less pain. Since then, I’ve learned to notice if I do this and to be cognizant of moving it normally if necessary. I’ve found that holding it static like that actually causes more pain and problems than my body thinks it’s trying to solve!
Among my most unusual compensations is how I handle writing. While I can do virtually anything left-handed if necessary, I’ve never mastered writing with that hand. My shoulder used to hurt so much that there were days in high school and college when I couldn’t bear moving my arm across the paper to take notes. So, for particularly painful days, I learned to use my left hand to slide my notebook across my desk so I could keep my right arm still while writing.
While it sounds like kind of a mess, I have to say, necessity has most definitely been a catalyst for me to find ways to work around my limitations. While I now see this in such a positive light, I was most definitely not always that way — but that’s a story for another column.
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 other 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 Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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