A massage therapy session reminds me of my EDS diagnosis

In a recent column, I described how my massage therapist and I realized that the cause of my back and foot pain was actually my hip. Thankfully, since that session, the pain has diminished. I had another session to work on it more, and I’m hopeful we’re moving in a direction of healing.

This latest experience reminded me of when I was diagnosed with Ehlers-Danlos syndrome (EDS).

When I was 22, my family and I had been working for years to figure out a diagnosis for me. The massive bruises I had to endure while playing sports were the first clue that something wasn’t right. My physician dad and a colleague who was a hematologist and oncologist kept digging, but everything we’d investigate or test for came back normal. While EDS isn’t well known, it was even less so 25 years ago, when we started down this path.

Eventually, they narrowed down their ideas and suggested I see a specialist. We made an appointment, and after an exam and a conversation, the doctor said, “I think you have what’s called Ehlers-Danlos syndrome, but you should go see a doctor at Johns Hopkins.” So we made an appointment and waited for the day to arrive.

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I don’t remember much from the appointment, but I do remember the doctor asking me where I experienced pain. When I told him I had pain in my hips, he seemed skeptical and said that what most people think is hip pain actually isn’t. Hip pain, he said, is quite deep. I assured him that I had hip pain, and we moved on.

Then came the physical part of the exam. As he examined my range of motion and the texture of my skin (it’s weirdly soft), he palpated around various joints. I remember him saying, “If you had hip pain, it would hurt right here.” I nearly launched off the table from the pain. He was clearly taken aback and apologized. “I guess you do have hip pain,” he acknowledged.

It was that same painful feeling I had during my recent massage. Clearly, the issue with my hip isn’t new, but like many things with EDS, it comes and goes according to its own schedule. Sometimes the pain flares, while other times it goes quiet and doesn’t bother me for a while.

I’ve come a long way since that diagnosis. After years of intensive physical therapy to improve a badly damaged shoulder and relearning how to walk properly instead of balancing on my joints, I’ve made massive progress. I choose to see my diagnosis as a starting point that has allowed me to accept it, create a program for self-care that works for me, and move forward to live as normal a life 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.