Managing My Latest Pain Flare

Karen Del Vecchio avatar

by Karen Del Vecchio |

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For the past week or so, I’ve been dealing with a pain flare. As sometimes happens with me, I don’t really know what started it. I have old injuries that are easy to aggravate, and they become the points from which my pain tends to radiate.

Though I can often pinpoint where flares begin, this time I can’t. As I’ve described in a previous column, this is one of those “squirrel sneeze” moments.

As usual, my pain is centered in my shoulder and works its way out from there. It travels up my neck, down my back, and sometimes even into my hip. Subluxation also occurs more frequently when I’m in a pain flare, and I’m not sure why.

My right side almost always is more strongly affected than my left side, which I can only assume is because I have more old injuries on the right. I don’t think I’ve ever had a pain flare that didn’t involve my shoulder. 

My right shoulder is a mess. And while I’ve gotten a much better hold on the pain since I received a diagnosis of Ehlers-Danlos syndrome (EDS), and have had extensive physical therapy and massage on it, my shoulder will never be normal.

Although new research has indicated that EDS patients have unique shoulder issues, mine is compounded by an old injury I sustained at age 15. I broke my collarbone, dislocated my shoulder, tore my trapezius muscle, and for lack of a more elegant phrase, decimated my shoulder joint and everything surrounding it. 

My collarbone healed too short, which causes my right shoulder to be continually pulled slightly forward, putting extra strain on my damaged trapezius muscle. I have lots of scar tissue in that area as well — overall, it’s not a happy joint. As a result, it doesn’t take much to set it off. 

While I’m working on my regular routine — massage, heat, and staying active — this flare is being stubborn. It’s a bit different from my typical flare in that it’s less severe in pain level but longer in duration and more difficult to calm down. 

I’m someone who sees and recognizes patterns. That ability usually works to my benefit, as it often helps me to identify triggers by noticing differences in my routine. With that information in mind, I can sometimes get a better sense of what might help to calm my discomfort. Without it, to some degree, I’m shooting in the dark. 

Then again, even if I know what set it off, I can’t always calm it down. It’s like playing a game of chess when all the opposing pieces are in disguise and you have no idea which one is the queen that you’re trying to pin. You have to start by going after your best educated guess and hope that eventually you get it right.

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

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