Remembering when my physical therapy caused me pain

Before my EDS diagnosis, my treatment hurt more than it should've

Karen Del Vecchio avatar

by Karen Del Vecchio |

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First in a series.

After I was diagnosed with Ehlers-Danlos syndrome (EDS), one of the many things that became clear was why my previous attempts at physical therapy had failed when I was 16. Well, not just failed — they’d made everything worse. The therapists had understandably tried traditional modalities and protocols for my shoulder injury; they had no reason to do otherwise. They’d been as baffled and frustrated as I was that the harder they’d tried to help me, the worse I got.

Those physical therapy sessions had hurt me. Badly. Every movement and exercise caused stabbing pain to shoot through what was already a chronically throbbing shoulder. With my stubbornness and tolerance for pain, I’d originally assumed I just needed to push through and I’d get better. So that’s what I did, completing my exercises while hurting.

After several weeks, it was apparent that the harder I fought to do my exercises, the worse my pain and range of motion became. Clearly, the therapy wasn’t helping. Thinking that perhaps I needed more time to heal, I took a few weeks off from the sessions before trying again, but I got the same result. After several such starts and stops, I finally gave up and just tried to ignore the never-ending shoulder pain and the less than 25% range of motion in my right arm.

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After my EDS diagnosis

I’d been out of physical therapy for several years when, at 22, I was told I had EDS. When I had an actual name for what was happening to me, I understood that I did need therapy, even though I was against it. Considering that my previous sessions had been so painful, I had no interest in going through them again. But I gave it one more try. I was certain the outcome would be the same, but at least if it failed, I could say I’d done everything I could.

I didn’t know of any particular therapist to request, so I let my insurance find one. I got a call to set an appointment at a local clinic, and off I went.

Then I met Lisa.

Watching her at work was like seeing a pint-size human full of rocket fuel (or caffeine?) bound around the clinic at warp speed. I’m not sure she knew how to be still or speak slowly. I was amused by her limitless enthusiasm and occasionally caustic sense of humor. Maybe, I thought, physical therapy wouldn’t be so bad after all.

I don’t remember many details of our conversation that day, but I do remember a few things: One, she was astonished by both my pain level and severely restricted range of motion, and two, while she’d heard of EDS, she’d never treated anyone who had it. Hmm. That wasn’t what I wanted to hear. But after our initial evaluation, I decided to go back and see how it went.

When I returned, I was astounded to find out that Lisa had been diving deep into research about how best to help someone with an EDS diagnosis. She’d begun reading about EDS symptoms and their probable effect on my rehabilitation. Not only that, but she listened to me — and by that, I mean she asked for feedback about her plans and then listened to me when I answered. With this type of attitude, I was on board to try physical therapy again.

Next week: what happened when my physical therapist took my EDS into consideration.

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.


William Kakish avatar

William Kakish

My first experience with PT was after surgery to stabilize my "trick" knee. That's what they used to call chronic dislocations several times a week since I was 4 years old. The experience of PT was horrible pain, such that I refused physical therapy after surgical repair of my elbow following a break caused by another fall. I only consented to PT and OT after another serious injury resulting from a fall, that left me quadriplegic and required a cervical fusion. I didn't want to live that way. I went to the constantly rated #1 rehab hospital in the US for my therapy. They listened to me and designed a custom program for me and I recovered over the next two years. You are right. You need to find that therapist who listens to your feedback and customizes therapy to your condition. I now gladly go to physical therapy. Chronic injuries are now stumbling blocks that I now know I can overcome with the help of a caring physical therapist. You are lucky to have found one at 22. I was in my 50s when I went back to physical therapy. I've been in physical therapy now for the last 20 years off an on and it has greatly improved (I say saved) my life.

Karen Del Vecchio avatar

Karen Del Vecchio

The right therapist can absolutely make a huge difference. Thanks for echoing that, William!

Mia avatar


I can not wait to read next week's continuation of this article!!


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