With EDS, it’s always something, I’m continually reminded
Once again, I'm having a flare where years ago I injured my hip playing soccer

My hip hasn’t bothered me in a while. I guess that means it was about time for it to flare up and remind me that it’s there!
That’s how it tends to go with me and my Ehlers-Danlos syndrome (EDS). Some ailments are constant, such as the ones in my shoulder, while others tend to come and go. This time my hip hurt a little bit for several days, but not badly. Then I woke up one morning and from then on, as the hours passed, my hip got more and more sore throughout the day.
Regular readers may remember how I initially injured it, tearing my right hip flexor in high school. I remember that it was pouring rain, yet for some inexplicable reason my varsity soccer team was still practicing. There was so much water on the ground that the ball was even floating on parts of the field, but the coach still had us keep going.
At one point I planted my foot to send a ball from the outside line toward the center and felt the grass give way beneath my cleats. The resulting slide hyperextended my leg, and I could feel something in my hip give way.
It took months for that injury to heal, and to my surprise, it hasn’t been as constant a problem for me as most of my other major injuries. For once, it seemed like something had healed relatively well. But since then, it’ll sometimes flare back up and remind me that it’s not 100% right.
Caring for my hip, again
I’d been in pain before my last massage, mostly because I’ve been running flat out and feeling completely exhausted; that always exacerbates my pain. I knew then my hip was a little sore, but I wasn’t too bothered by it. After my massage, however, when we focused on my back and shoulder (which were by far in the worst shape), I think I was finally able to notice just how much my hip hurt, now that all my other hurts weren’t competing with it.
When my hip flares up, I tend to get a sharp ache that runs along my hip bone, from the top down toward my thigh and then across the line where my leg meets my torso. The muscles in my upper leg are quite tight, as are my glutes, and I think that those tight muscles are also pulling the ball of my hip joint to the edge of the socket, which creates its own discomfort.
The tough part with my hip is how to handle it. Usually stretching is a good idea for tight muscles, but with my EDS, I have to be careful that I don’t stretch beyond the body’s normal range of motion, which isn’t healthy. I can use my muscle roller on my thigh, but that doesn’t work for the structures along my hip bone. I’m hoping that working on what muscles I can will allow some to release and others to calm down as well, especially those muscles I can’t work on directly.
EDS can sometimes feel as though I’m working on a moving target, but I just have to keep moving. This week it’s my hip. Next week it might be my shoulder. Or maybe, if I’m lucky, nothing. But either way, I just keep pushing forward.
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.
Maureen Le Blanc
I have a « tricky hip », a tricky ankle and a tricky knee,
all from previous injurious. Having read how you initially
Injured yours, I can feel the pain. As my chiro tells me, once
you pull tendons and ligaments with EDS you’re more liable
to pull them again. Staying active is key after recovery.
Barbara M Bellehumeur
For acute pain from injuries, the standard treatment is “R-I-C-E” or rest, ice, compression, and elevation. from DR Brian Murphy ED News
Barbara M Bellehumeur
Sorry, Karen. Having an injury is bad enough; revisiting it years later is unfair. Knowing that EDS and the faulty collagen affect every cell and system in the body makes one ready for anything I see Dr Black at Johns Hopkins, between NIH, Hershey, UPMC, and Temple, they have kept me going for many years. I use a Japanese cold soak tub for inflammation and pain in the lower back and feet. I have a friend in the UK with vEDS, she swims in the cold waters there for relief, also. This is the only way I get a true restful night's sleep. We must be creative as all types and all individuals are faced with many different comorbidities and symptoms, yes?
B. Rhonda Stephens
I feel this myself acutely. I injured my ACL; severed it actually. And since then it’s been a pain. Now the ligaments above and below the knee subluxate and pop back in. Not painful but the area swells and then it’s too tight to move easily. But it goes away in a day or so. My right shoulder pops in and out. What type of massage do you get? I need help but I also resist it. So tired of doctors not understanding.
Brandy Postoak
This roving pain is also my truth. EDS is an unwanted gift I wish I could give back.
MnM
I have EDS class 1 and 3. Daily pain in all different areas. Stretching is worse. Lifting weights is bad. Massages., swimming, walking, bending, acupuncture, any pain meds, therapy, nothing helps.
Surgery is out of the question. Drs say too much damage.
What do I do? Pain level 24/7 is an 8 to 10 or worse.
I wear braces.
Anyone out there that can help me@
Do you find your pain gets worse in cold or storms coming@
Chelsea Kenna
Ugh this is also so familiar to me! It’s always something!
When my hip is feeling better, I’ll get a migraine, or my old shoulder injury will suddenly flare up, or my recent mystery skin issue will get worse! When those things improve and I’m excited to be productive again, suddenly my hip is angry once again.
I joke with my husband that I’m cursed. My body doesn’t seem to be allowed to actually have a good day anymore, without SOMETHING debilitating distracting me.
Irene Shaulis
I call it the gift that keeps on giving 🥲