Managing my crooked life with Ehlers-Danlos syndrome

I have an image to explain how the sides of my body can get out of whack

Karen Del Vecchio avatar

by Karen Del Vecchio |

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I’m pretty sure that if I were an instrument, I’d be an accordion: stretched out on one side, squinched up on the other.

Sometimes as I walk along, in fact, I can actually experience myself as twisted. When standing up straight recently, I felt that my right hip and shoulder — both of which have had significant injuries — were being pulled closer together by tense, tight muscles along my rib cage. In response, my left side felt stretched out to compensate.

Trying to stretch out my tight, angry, intercostal muscles (the ones that go within your ribs) felt like pulling on a bungee cord. I could make myself straighten out, but as soon as I stopped that intentional action, the muscles would spring right back to tightness. As a result, it felt like my right hip and shoulder were several inches closer together than the same bones on my left.

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It’s a bizarre feeling to be crooked like that. There’s a natural, even state in which our bodies function well, but sometimes they just don’t cooperate — especially for people diagnosed with Ehlers-Danlos syndrome (EDS). While everyone deals with muscle tightness and injuries, those of us with EDS certainly have to handle those issues more frequently.

It’s hard to explain to people how EDS can cause tight muscles when the disease is often explained as causing a laxity and stretchiness in the body. Understandably, most people can’t figure out how overly loose joints can lead to extremely tight muscles. Once I explain that it’s one way the body tries to compensate for loose joints, people feel it makes more sense. But it’s still not logical to many.

Once one physical area is pulled out of place, it creates a domino effect that cascades throughout my body. The intercostal muscles, for instance, are also connected to our backs, so in my case, it’s not surprising that they can affect my back muscles.

My uneven hips are a perfect storm for causing leg pain, too. If one hip is pulled higher than the other, then it’s kind of like having one leg a little shorter than the other. To compensate, my muscles have to work unevenly, and that can cause my hamstrings, calves, or even my knees and ankles to get sore, as well.

When those tight muscles finally unlock and release, however, the feeling is both strange and somehow neat. Usually someone has to put gentle tension on the side that’s tight until my intercostal muscles release. When they do, I feel as if my leg grows about 6 inches! Once those muscles let go, all the others connected to them start to let go, as well. My back will soften, my hips will even out, and my body will overall feel much less reactive.

While I’m not a fan of how it feels, the image I have of my body as an accordion is admittedly funny. I see myself like a silly cartoon character, with a torso that’s the centerfolds of the accordion, with my head on top and my legs out the bottom. At least I can find humor in it somewhere!

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.


Janice Crowder-Torrez avatar

Janice Crowder-Torrez

Love this visual.... yes an accordian!
Thank you.....


Jomi avatar


Humor is the best way to deal with chronic issues, especially those related to EDS. My middle toe on each foot completely dislocated, and the ones on either side were threatening to be next, so I felt the best way to deal with this was to have the three middle toes on each foot amputated. I’ve decided that I must hang loose 🤙 because I can’t hang ten(not that I ever had…)!😄 It is difficult to find humor when we’re in pain, but I try very hard to do so and it usually lightens my mood. Now I need to figure out which musical instrument I am… 😁

Roberta Glick avatar

Roberta Glick

Thanks for writing this. You have described how I feel to a tee. Some days everything also clicks in and out of place loud enough to hear! I don’t think anyone who does not have EDS can really “ get it”


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