Which Came First, the Injuries or the Compensation?

Karen Del Vecchio avatar

by Karen Del Vecchio |

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As I often do, I had an interesting discussion with my rock-star massage therapist Kim last week.

She’d been on vacation for a few weeks, so I’d missed a session and was feeling quite sore. My hip, which I injured a few months ago, recently decided to get angry again for no apparent reason. As a result, between that and the compensatory and connected pain, I was incredibly sore and reactive when she started working on me.

Kim started talking about how my “wiring” is all messed up. By that, she meant that I often react in vastly different areas than her average patient. For example, when she works on a trigger point on my spine, my shoulder might twitch. Another example is that working on the muscles along my ribs can sometimes cause my hip to jump.

While these areas are all undoubtedly related, it’s apparently unusual that I have such distinct reactions in areas so far from where she’s working.

I don’t know if this is a result of my Ehlers-Danlos syndrome (EDS) or the countless injuries I’ve incurred because of it. As a teenager, I badly damaged my shoulder when I broke my clavicle, tore my trapezius muscle, and injured a wide range of related connective tissues. I also pulled my right hip flexor as a teenager, and of course I injured the connective tissue around my hip this winter as well.

While I don’t recall hurting my back specifically, Kim suspects that the scar tissue along my spine is likely the result of years spent diving while playing goalkeeper before my diagnosis. Many of my issues seem to radiate out from a central point on my back that presumably I injured at some point but don’t remember.

Either way, there’s a bit of a “chicken or egg” question: Does that spot inflame other areas, or do my other injuries radiate back to that place?

In some ways, I don’t think it really matters. I often feel that managing EDS is like playing the old Whac-A-Mole arcade game (which I love, by the way). You calm down one area and the issue retreats, only to have another issue pop up and come at you instead. Then you manage that one, and a third conundrum pops up where you least expect it.

It’s a constantly revolving set of issues, but as long as I do my best to deal with each one as it comes up, rather than letting them multiply, I tend to do better. And playing Whac-A-Mole, at least, is fun.


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, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.


Alicia avatar


We would have had to have had the same injuries. I have one thing happen get shots only to have another issue crop up the minute the local let up or have the local cause a problem elsewhere. I can have PT start to finish a strengthing session only to have that cause another place to go bad. Some issues cause a totally opposite reaction than all other clienrs/patients. Some PT or OT cause injury even though they've the book open to connective tissue issues our EDS specifically or said they researched it or had other clients experience. I believe them but what I can not seem to find isa way to explain Mary might be okay with such and such but Alicia may not. I can have something happen that didn't happen to Mary.
I do have a question: how do you have massage therapy?!? Medicare won't pay for that will they? How or what kind of doctor got you approved for that? Thanks so much!

Karen Del Vecchio avatar

Karen Del Vecchio

Hi, Alicia! Thanks for taking the time to comment. Unfortunately, no, massage therapy isn't covered by my insurance. I'm incredibly lucky to have an amazing provider who's both fantastic as well as reasonably priced, but I know many people aren't that lucky. I've actually written about how frustrating it is that one of the few ways available to help manage pain in those of us with EDS has to come out of pocket.

Tina Powell avatar

Tina Powell

Does the fragility of you vessels cause bruising after massage? I’ve had success with massaging certain areas. I just can’t do too much, especially my legs. Thanks

Karen Del Vecchio avatar

Karen Del Vecchio

Hi Tina. No, thankfully it doesn't, and my therapist is also quite careful. I can certainly see some people having trouble with bruising though.


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