Changing patterns have mystified me about the sources of my pain
Lately I haven't been able to rely on what I thought I knew about my EDS
Every time I think that maybe I’ve figured some things out with my Ehlers-Danlos syndrome (EDS), it’s like my body says, Nope! Just kidding. Let me do something completely different!
Since EDS generally isn’t progressive and varies for each person who has it, we can have trouble knowing how best to stay on top of its management. One of my ways is to notice new patterns so that maybe I can figure out what’s possibly triggering a problem.
Recently, however, I seem to be having some different areas of pain even though I haven’t changed anything about my routine or what I’m doing physically.
What’s happening now
One area where I’ve particularly noticed a different sort of discomfort is my upper shoulder and neck. While my right shoulder is badly damaged — I had a rotational fall in a soccer game as a teenager, before my EDS diagnosis, resulting in a broken clavicle and damage to numerous muscles, tendons, and ligaments in the area — I’ve learned many patterns that reveal what tends to bother it most.
Some worrisome movements include work above my head or away from my body, lying on my right side, and repetitive motions or exercises. If I do any of those things, I’m pretty much guaranteed to have a pain problem, so naturally I try my best to avoid them. Yet despite no change in my routine, work, or activities, I’ve been experiencing more neck and shoulder pain and more frequent subluxation (partial dislocation) than I have in years.
The other place I’ve been noticing more pain is my right hip. It just feels achy and somewhat stuck, as if it’s just not sitting quite right. I don’t notice it too much until I lean over, and then I feel like the joint isn’t moving smoothly. It doesn’t limit my range of motion, though. And despite an old hip flexor injury, my hip has historically been a place that only bothers me if I do something specific to aggravate it, like getting stuck in the mud. But recently, it’s been bothering me without any trigger.
That’s frustrating because if I can’t figure out what’s causing something to happen, it’s hard for me to prevent it.
I try to be as proactive as possible with my EDS because preventing a pain flare is always better than trying to rein one back in (for obvious reasons)! Recently, however, it simply seems like my joints are becoming irritated for no apparent reason whatsoever, and even my regular massages don’t seem to have as much staying power as they usually do.
It appears that some of my long-standing patterns may be changing; whether temporarily or long term, I’m not yet sure. And I’ve yet to figure out what the new patterns might be, either.
For now, I’ll keep taking mental notes on what I’ve been doing and how I’ve been feeling to see if any connections arise in the coming weeks and months — that is, if these new patterns continue. If they do, that’ll give me more information to help me feel the best I can each day.
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.
About the Author
Jaclyn Yudkowsky
Hello! Thank you for your article. I did want to say that osteoarthritis (OA) actually is progressive with EDS. Because our joints are so mobile we develop OA in our 20’s and 30’s when most people develop OA in their 50’s and 60’s. Your joints may be aching more because you have OA which can be checked via X-ray. I hope that helps!
R.L.
It's _not_ progressive‽ I'm over 60, and can assure you age makes a difference, though some medications have held off the worst of it until the last 20 years or so. It's also cyclical. Certain joints are affected more than others, and the severity of symptoms varies with diet and other health issues. I'm less hypermobile now than when I was younger. Apparently someone isn't paying attention. Or the geneticist I saw was wrong. Uh huh. Good luck to you.
Tim
All I can say is adapt. It will happen like this for the rest of your life. And sometimes pains are not associated with past injuries or from compensating. The only pattern that happens is random pain. FYI - my EDS is in every part of my body, including vascular and brain (anywhere there is collagen). It’s extremely complex. The genetic mutations extend to autism and ADHD but with a high degree of interoception. It gets confusing advocating for medical care.
Lynda Erickson
In my experience Ehlers Danlos is very much a progressive illness. Maybe I experience an increasing troubled body because I’ve lived an athletic life and was only diagnosed at age 70. Lots of damage done.
Sue
Hi you may want to check out Thoracic Outlet Syndrome. It's a common comorbid of EDS. Take care.
Valerie A
I'm so sorry your pain is changing. My pain increased a lot, and my movement range decreased, in my 30's. After surgeries and 15 years of multiple surgeries and all kinds of bodywork, I finally got to the bottom of a significant component of the pain increase. It was a gradual thickening of my fascia due to hypermobility/EDS. That plus overuse had devastating results. Google "EDS thick fascia tissue." A professional massage machine used daily at home consistently is making a difference in breaking down restrictions that took a lifetime to build up. Once a week professional massage was just not enough. My massage therapist says I saved my life by buying it.
Kathleen Davo
A good chiropractor can help put subluxations back in the right place. If it is bad, 2 or 3 visits the first week or so will be necessary. Once you are better, you can go less. My children & I all have hEDS, and we see a chiropractor for an adjustment every three weeks. This helps us stay in place & have less bad subluxations. Our chiropractor has been adjusting my kids since the day they came home from the hospital, when they were born.
Jane Willoughby Woods
I'm turning 67 this weekend and my EDS has increasing caused more pain throughout the years. I've been a pretty active person, worked as a painter, but now I'm an every-other-day person. It has progressively caused weird and chronic pain.
susan cutuli
Thank-you!
One of the most frustrating things for me is not having causation for my pain.
Mine is definitely getting worse
Has more parts have been affected, but so has my resilience and acceptance. It’s the only body I have.
Pam Simmons
The ten years before (quantified with hindsight) menopause officially was "declared" for me, so early 40's, the weirdest pains and autonomic issues cropped up. By the time menopause happened ripping and tearing pain started in my elbows and my ligaments and tendons seemed to start diminishing in function. PT made it worse as measured by the therapist. Anxiety through the roof. Cognitive decline. After reading New York Times article in early 2023 about menopause I embarked on a strange journey but now I can function. And osteopath manipulation was so awesome (hard to get down South, where I have since moved to.) Best of luck, don't give up...you have a lot of self awareness, so don't get overwhelmed. We are rooting for you.