With the right therapist, physical therapy no longer caused me pain

Learning the approaches that worked for me and my EDS

Karen Del Vecchio avatar

by Karen Del Vecchio |

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Last in a series. Read part one

For a long time, I used to dread going to physical therapy. It was painful and often counterproductive, and no one, as I described in my previous column, seemed to understand how to best handle my Ehlers-Danlos syndrome (EDS).

But pure luck landed me with the right physical therapist, Lisa. Her bubbly personality and determination to find a way to help me made the experiences dramatically different from those before.

Over the next several months, with some trial and error, Lisa and I realized some important things about how to adapt physical therapy to my needs. While each person with EDS is different, we found that certain approaches clearly worked for me — or they didn’t.

For instance, we discovered that it’s more effective for me to do more repetitions of an exercise at a lower resistance than to try the opposite approach, which seems to invite a pain flare-up. Using a muscle more gently for a longer period was far superior than trying to explore its limits.

We also learned that having the right person supervising me was important. While many exercises depend on a person’s range of motion, because of my compensations for EDS, I often work beyond a safe range. The person assisting me needs to be highly attuned to both my form and range of motion. My exercises went far better when supervised by either Lisa or one of a handful of physical therapy assistants, all attentive and skilled at their job.

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Adapting exercises, not abandoning them

Adaptation was another element of my success in physical therapy. Not every standard exercise worked for me, which meant that Lisa had to adjust them or find another way that I could work the same muscle group. Creativity was key, and Lisa was great at it.

We also found that extra support was critical. While people usually don’t perform their therapy exercises while wearing braces, wraps, or tape, these aids proved beneficial for me. Part of my problem, we learned, was that the stress of the exercises prevented my unstable joints from being aligned. As a result, the targeted muscle groups weren’t being properly worked.

Support helped my joints remain in place. By using Kinesio tape to support my shoulder, for example, I could do the exercises properly and begin to build the appropriate muscle. Eventually, I built up enough muscle to stabilize myself, allowing me to do the exercises without supports.

Lisa and I realized that my body needed a break once in a while. After having physical therapy sessions two or three times a week for a couple months, we’d take a week or two off to let my body rest. While I’d have a few days off between each appointment, having a longer period to recover made a big difference in allowing me to make progress.

Perhaps the most important thing we learned was that we were in it for the long haul, so we might as well make it as fun as possible. One day, I saw Lisa doing cartwheels down the aisle to move from one patient to the next.

Making a difference

I ended up being in physical therapy at the same facility for about three years. Progress was sometimes incredibly slow, but the fact that I made any progress — even if it seemed like it was at a snail’s pace — made all the difference.

I haven’t been in regular physical therapy for about a decade, but had it not been for Lisa and her team, I don’t think I’d be anywhere near as functional as I am now, nor would my pain levels be as stable as they are.

The time, energy, and dedication Lisa and her team put into learning about EDS, adapting as they went, engaging with me, and truly listening to my experiences and needs helped me heal.

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.


Linda Hunter avatar

Linda Hunter

I’m glad to know that my experience isn’t unique. My 3 adult children and I have hEDS. It’s been our experience to, not only lack relief from PT, but to have new painful injuries arise as immediate and after effects of sessions. But one careful therapist brought me out of a severe frozen shoulder without surgery after stating she had never before seen such an extreme case. She also noticed that my pelvis was tilted and one swift adjustment brought me into alignment resolving years of terrible hip pain and limping. With that observation it caused me to sleep with my knees together which has worked for years to keep my pelvis in line. So there are good PT professionals and lesser. Be sure to move on in your quest if you’re not benefiting and run if it makes you worsen

Karen Del Vecchio avatar

Karen Del Vecchio

Yes, the right therapist/doctor/practitioner makes ALL the difference! Thanks for echoing that, Linda!

Cynthia R Willner avatar

Cynthia R Willner

I just said to my PT 2 weeks ago that because of her I keep coming back to her. She listens and even ask how things went after therapy. She did her research on ED. I even went to a therapist that supposedly had ED and new about helping in PT. I was in so much pain after 2 sessions that I could barely do anything for a month. I've had cervical spine surgery and have a nice 7 inch scar from L-3 to S1. my spine surgeon couldn't believe the exercises she had me do. Another PT I went to as I'm telling her what will injure me because of my instability is giving me the very exercises I'm saying I can't and shouldn't do. Instead of listening to me she starts walking out and saying she's going to see her next patient. No working with me or real caring about past experiences and the possible damage that they may cause. All that's important is THEIR GOAL not you. They don't seem to care that what they're wanting you to do may cause you to need another surgery. It's not about you being difficult. I am so thrilled that you addressed this. I actually thought maybe you had recorded my conversation with my therapist.

Karen Del Vecchio avatar

Karen Del Vecchio

It can be so tough when people don't listen. I'm sorry you had that experience! Speaking up clearly but amicably I've found is the best path forward for me. And if that doesn't work, I've learned to move on and try someone else!

Mischa Brown avatar

Mischa Brown

This is so very encouraging and helpful. Thank you so much. I will be posting this link on The Zebra Club app for newbies who are just learning to listen to their bodies and work with their medical team.

Karen Del Vecchio avatar

Karen Del Vecchio

I'm so glad to hear that, Mischa! It's definitely a learning curve for each person since all of us with EDS are so different, but I hope this might give others some ideas to think on if nothing else!


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