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Coping with Pain from Ehlers-Danlos Syndrome

You might have seen Hallie’s edition of Tell Me a Story. Her journey with pain as a patient with Ehlers-Danlos Syndrome (EDS) is familiar to us now, but several years ago, we had not recognized just how often EDS, a hereditary cause of hypermobility, was a cause of pain. In fact, I recall reading a journal article in the 1990s that said hypermobility was not a cause of pain.

But it is. We’ve learned a lot since then. Several years ago we began to notice that patients came to our Pain Clinic with a variety of different pains. We listened as they told their stories and noticed that many of them were hypermobile, or “bendy.” We started to see a connection: pain was associated with EDS way more than we ever knew. It was starting early with these patients, sometimes before adolescence, and really seemed to pick up once a person goes through the hormonal and physical changes of puberty.


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