Sometimes my sense of my body is out of touch with reality

With Ehlers-Danlos, I may not recognize when my body is out of alignment

Karen Del Vecchio avatar

by Karen Del Vecchio |

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I usually know when I’m crooked. When my body has been pulled out of alignment in a variety of ways, it’s usually pretty clear. But during my latest massage to treat the symptoms of my Ehlers-Danlos syndrome, something unusual happened.

As I was lying on my back on the table, Kim, my amazing body worker, came in and asked me to shift my hips to the left. I did, and then asked her why she wanted me to lie in a zigzag shape, with my head and feet in line and my hips off to one side.

She looked at me oddly, laughed, and said that before she asked me to move I was crooked, but now I was straight. It was such an odd sensation. She was telling me I was straight, but my body was telling me I was crooked. She was correct, but wow, that was weird!

It quickly became apparent that not only was I out of whack, but I was also pretty stuck that way. The muscles along my ribs were very tight, but gentle traction on my legs didn’t release them. That happens occasionally, but it’s also a sign that I’m physically not in a good place.

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Are My Unique Massage Reactions Related to EDS?

Sometimes, when my body’s become too wonky and twisted, it feels a bit frozen. I’ll know it hurts, but it’s seems as if it’s in the background. I feel like I’ve moved beyond the pain, but to get my muscles to relax and unravel, I have to work back through the pain in the other direction, so to speak.

As Kim began working on me, my muscles started to wake up and remember how stiff and uncomfortable they were. In many places, once they started reacting again, they were so hypersensitive that even touching them caused spasms. When that happens, oddly, the spasms themselves usually aren’t painful, although they feel weird. And sometimes I just have to ride it out until they relax and let go.

I usually feel like a new person after my massage. I’m much less sore, not as tired, and feel what I assume is somewhat “normal” for at least a few days. But occasionally, when I’m this wonky, that doesn’t happen. While I did feel better afterward, I didn’t have the same kind of relief. It can sometimes take a few sessions to get everything untangled and relaxed again, particularly if it’s been fired up, as it has been the past few weeks. But eventually it’ll settle down again.

Right now I’m keeping my eye on the finish line. In just a few weeks, I’ll be on summer break (one of the benefits of being a teacher), and I’ll have some time to rest up, regroup, and recharge!

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.


Susan Edwards avatar

Susan Edwards

Karen you are not alone with the observation that the body map and the brain map are at times different. You may wish to look at the journal articles of Dr. Claude Hamonet's group on Dopamine Responsive Dystonia in EDS. They are easily found and open access on line.

Christy avatar


My proprioception is off often. Sometimes I look down at myself or my PT will mention it and it's just crazy what my body feels is "normal".

Suzanne Goodwin avatar

Suzanne Goodwin

So interesting because I have the very same experience with my massage therapist. When she asks me to shift my body to straighten out, I feel crooked! So validating to know I'm not the only one. A very strange feeling, indeed! Another reason why massage is so helpful for people with EDS. :)

Colette avatar


Thank you for your column! Ugh-totally understand about the cramping during massages. It's like my body is out of control.

Susan Leibler avatar

Susan Leibler

The condition which Karen Del Vecchio speaks of is called Proprioception. I too have that, but all the time. My EDS is rapidly progressing in my 60s. In addition, I have Stereognosis - which is, for example, if I am in a store and am holding car keys, sunglasses, cell phone and wallet in one hand and pick up a bottle of nail polish to consider, I can't feel what's what in my hand unless I look at my hand. If I don't look, I have no idea which item is which, and have walked out of a store shoplifting. Once at my car, I look to utilize keys and see the nail polish and immediately go back in an apologize. This is a crazy syndrome! Some days I can wiggle my teeth with my tongue, other days I cannot swallow unless I sit up perfectly straight because my esophagus folds in on itself while I'm slumping. So many of our symptoms are invisible to others, it is so difficult to try to explain.

Lauren Olson avatar

Lauren Olson

I thought it was just me, but every time I think I am straight on the chiropractor table I am actually crooked; and when I straighten out, I then feel like I am crooked!


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