One Small Move Prompts a New Pain Flare

Some thoughts on Ehlers-Danlos pain tolerance

Karen Del Vecchio avatar

by Karen Del Vecchio |

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As soon as I felt my shoulder click, I knew I was in trouble. Overall, my body had been doing relatively well recently, without any pain flares. But that subtle feeling in my shoulder let me know the streak was about to come to an end.

While I often don’t know what causes a pain flare, I knew this one was coming.

I was helping one of my dogs out of the car when I felt slight right-shoulder subluxation. I immediately rotated my arm, which helps to straighten it out. But I’ve learned that whether it stays like that for a few seconds, minutes, or hours, the end result is almost always the same: a pain flare.

I can’t tell you why. Logically, I would think that something being out of position for a matter of seconds wouldn’t have the same effect as it would for an extended period of time, but I know that Ehlers-Danlos syndrome (EDS) isn’t logical. While I can find general, overarching patterns, there are always exceptions. There are also things I can count on happening that don’t make a whole lot of sense to me. That’s life with EDS.

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Mind games

For good or bad, when I know my daily behavior will have minimal impact on my pain levels, I tend to ignore the pain and push forward. While I did take it easy this time, put on a heating pad, and take a dose of ibuprofen, I knew a pain flare was coming. So after dealing with the immediate necessities, I did what I often do best: I mentally blocked it out.

I realize that it’s a coping mechanism, and probably not the best one. One of the ways I handle my pain is to mentally compartmentalize it. I know somewhere in my head that I’m in pain, but I force it to the periphery of my mind as much as possible.

While my daily pain is now a fraction of what it used to be, thanks to a diagnosis, appropriate exercise, and regular massages, this long-honed “survival technique” I developed prior to being diagnosed is still my regular go-to plan.

I’ve learned about many great tools to help calm down pain flares, but it’s still a waiting game. I spend a lot of time on my heating pad, stay as active as possible, and aim for my next massage appointment. I used to get frustrated that it took very little to set off a pain flare, but I found that type of negative energy only made it worse. My body and emotional state are very much connected.

I’ve learned instead to acknowledge that it sucks, but at least I’ve found ways to handle flares when they happen. So I try to work through the steps as best I can and have patience. Being impatient will only extend the time it takes for my body to relax and for my pain levels to ease again.

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.


Maria C. Vallejo avatar

Maria C. Vallejo

May you be blessed with abundant knowledge and good heath!

Heather mcpherson avatar

Heather mcpherson

thank you for your articles.knowing that someone gets what we have to deal with is healing. so tired of being told "go to boot camp and lose 100 pounds" by people who don't understand. wish I could still ride a horse. merry solstice, Heather


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