My Compensatory Pain Can Escalate Quickly With EDS

My Compensatory Pain Can Escalate Quickly With EDS
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I haven’t been sleeping restfully this week. I’ve been doing that whole wake-up-and-roll-back-over thing seemingly a dozen times a night.

I’ve been dealing with a pain flare since I got stuck in some thick, deep mud in a pasture at the farm where I live and nearly pulled my right hip out of its socket. While I don’t feel acute pain, the all-over, aching soreness can sometimes be worse while trying to sleep. It’s difficult to get comfortable.

The sensation of my hip starting to pull from its socket was bizarre, to say the least. But it didn’t hurt at the time, which is pretty typical for me. It just felt strange. As someone with Ehlers-Danlos syndrome (EDS), I have so much laxity in my joints that they can move significantly before reaching the limits of their elasticity, thus causing me actual pain.

Thankfully, I was able to stop moving before I actually dislocated my hip. However, the incident caused the tendons, ligaments, and muscles around my hip to become inflamed and painful over the next several days, and I’ve been dealing with it since.

While massage would normally help, my therapist dislocated her knee in a freak accident, leaving her on crutches for several weeks and unable to work. I’m looking forward to having an appointment soon.

In the meantime, it’s been the perfect example of how one minor incident can cause a cascade of issues for someone with EDS. The pain in my hip has moved into my lower back as well as up my rib cage and into my bad right shoulder. While it’s not that noticeable, I’ve been walking slightly differently and have developed mild shinsplints and tightness in the bottoms of my feet.

While compensatory pain can happen to anyone, it seems to happen much more quickly and broadly in people with EDS. Then again, I’m pretty sure that someone without EDS wouldn’t have nearly dislocated their hip in the mud, meaning this would never have been an issue in the first place for the average person! But that’s simply a part of living with this disorder.

For many years, I was extremely frustrated by these types of experiences — simple, everyday mishaps that could quickly escalate into days or weeks of pain. I’ve realized, however, that anger and frustration only fuel the cycle, as my mental state and pain levels are closely related to each other.

If I get agitated with a pain flare, it makes it worse. If I do my best to work through it and keep a positive outlook, it tends to keep things more manageable. It’s not always easy, and it certainly doesn’t negate the pain, but sometimes the best you can do is find the little things and keep pushing forward.

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

An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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