How I dealt with an EDS pain flare-up after sleeping in a bad position
A stiff neck and shoulders led to a downward spiral of pain
When I woke up on a Saturday morning a few weeks ago, I suspected that I might’ve slept in an awkward position. I didn’t feel too bad, though, so I got up and started moving. I was hopeful that I just needed to stretch and loosen up. But I quickly realized that I’d actually set something off.
Throughout the day, my neck and shoulders got progressively sorer. I used my hand-held massager and heating pad that afternoon, which helped a little. And that night, as I went to bed, I crossed my fingers that it would ease up before spiraling into a full-blown Ehlers-Danlos syndrome (EDS) pain flare.
That turned out to be wishful thinking. The next morning, I felt worse, and by midday, my shoulders and neck were so tight that it caused a headache that made me nauseous. Before I had learned how to better manage my EDS symptoms, this used to sometimes happen, but I haven’t flared this badly in a few years.
Massage therapist to the rescue
Previous experience told me that the longer this went on, the worse the snowball effect would have on my entire body. I messaged my massage therapist, Kim, knowing it was unlikely she had any openings before my next appointment. To my surprise, she said she could fit me in the next evening.
When I arrived, I told her I was shocked that she had an opening. She admitted that she was fitting me in after her last scheduled appointment because she knew it must’ve been really bad for me to have reached out. She clearly knows how stubborn I am! I told her how grateful I was for her kindness, and then she got to work.
I believe the word she used to describe the muscles in my neck was “rope.” They were so tight that every time she rolled over them it felt like she was twanging a guitar string in my body. As a result of this extreme tightness, I was out of alignment in my C2 and C5 vertebrae as well as having a subluxation, or slight misalignment, of my EDS-damaged right shoulder.
Although Kim is not a chiropractor, when I’m out of alignment, it’s usually because my muscles have clamped down in classic EDS-style and pulled things out of place. Because of that, after Kim loosens up the muscles, things usually move back into place on their own as I move around.
Thankfully, after nearly an hour and a half of work on my neck, shoulders, and back, I rotated my right shoulder and felt — and heard — it go back into place. After that release, my C2 popped back in, and a few hours later, I felt my C5 finally relent and go back into place. The pain eased.
It’s been a long time since I’ve had a pain flare come up so quickly and with such intensity. My best guess is that I must’ve rolled onto my right side while sleeping the night that it started. Usually, I’ll wake up if that happens, because it hurts to lie on that shoulder with all of its damage. But if I’m really tired, occasionally, I won’t. If I lie on it for too long, it starts a pain flare.
I’m thankful that Kim was willing to fit me in, and also that I’ve learned some of my patterns over the years that can help me short-circuit these episodes when they happen. But apparently, now I also need to be extra careful about how I sleep. If anyone has any tips for that, I’d be grateful to hear them!
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.
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Mischa Brown
Thank you so much for the validating description of your flare. I’m so glad that you were able to get the right treatment. I have been learning the same thing for myself. I would also really like to figure out a way to fall asleep on my back, because I know that would prevent a lot of issues with my left shoulder, but so far, no matter how many pillows I use, I can’t seem to get to sleep that way. Please share whatever suggestions you hear and/or find help you.
Keir Harrington
Hey Karen,
I want you to know that I live vicariously through you girl when it comes to horseback riding. I used to be a back only sleeper until I decided to come off of opioids two years ago. Then I started to sleeping on both my back and both sides however I have a bad left shoulder. What I have found to be helpful is one of those big ole' u-shaped body pillows. A brand name that I am familiar with is Comfort U but they are also referred to as pregnancy pillows. I recently purchased one on Amazon that has memory foam in it but WOULD NOT recommend as it is way too stiff. I have owned two Comfort U pillows and just loved them however, for me at this point, they are a bit spendy so this is why I went with a cheaper one that I now regret. I hope this suggestion helps both you and Mischa. P.S. There is always the tennis ball tapped to your back option that is a crude cure for people who snore? ---^..^---
Karen Del Vecchio
Thanks so much for the idea, Keir! I might have to give that a try!
Jessica Owens
I have been reading about pregnancy pillows to help keep you from
Moving around , maybe that would help ?
Karen E Wagar
I got an adjustable bed frame and it really helped to sleep inclined with a pillow on either side of me. I got couch pillows that were long and narrow so they didn't take up too much room on either side of me, but still kept me from rolling over. I also used a long tube pillow for under my knees. I had to sleep exclusively on my back for the 1st 3 months following my breast reduction. I thought it would be about impossible. But I think the incline of the bed made it easier. And my shoulder pain upon waking is much less since this happened so I keep sleeping that way now. Hope this may help.