With EDS, is it better to know what caused an injury or not?
Either way, I've found there are pros and cons
Injuries, sprains, strains, and bruises are simply a part of life with Ehlers-Danlos syndrome (EDS). Sometimes I know what causes them, and other times I’m clueless. I’m not sure if it’s better to know or not. If I know, I can try to avoid those activities in the future, but on the flip side, knowing too much can make me overly cautious. There’s no great answer either way.
Some of my injuries are visible. I have bruises virtually all the time, some big and others small. I usually know what caused the larger ones, but I have absolutely no idea where many of the smaller ones come from. I just shrug and move on. I can’t do anything about it, and most of the time, they don’t bother me anyway.
With problem areas I’ve had for years, I don’t always know what exactly causes them to flare up, but I can usually make a pretty good guess. For instance, if my shoulder starts to hurt but I can’t think of a reason why, it’s likely I slept on my right side for a while. That alone can be enough to cause a flare-up. Other times, it’s obvious — I lift something wrong or grab an object with too much force, and I feel the muscles in my shoulder strain.
In addition, too much walking in unsupportive shoes can lead to ankle soreness, as my body tries to keep the joints stable. Other times, I’ll roll my ankle while walking, which obviously results in severe discomfort.
While I usually have a good idea why these joints flare up, my recent hip flare was different. Since sustaining a significant hip injury as a teenager, my hip has never flared up without cause — until a few weeks ago. The initial injury — a torn hip flexor — took a long time to heal, but I haven’t had many problems with it since, apart from the time I got stuck in the mud and nearly dislocated it. (Yes, that’s a true story!)
But now, my hip pain is the worst it’s been in years — since the mud incident, in fact — and I have no clue what happened. Basically, it ached a bit one morning, but that’s not unusual, since pretty much everything hurts when I get up in the morning. But as the day went on, the pain increased and I started having muscle spasms.
Despite the severity of it, I have no idea what set it off. I didn’t do anything out of the ordinary, I didn’t overtax myself, and I’m not aware of any movements that caused me discomfort. I’m completely baffled.
In the end, it doesn’t really matter; a pain flare is a pain flare. But it can be frustrating not to know why it happened, because then I can’t prevent it from happening again. I hope this isn’t the start of a new pattern, but I’ll just have to wait and see. Thankfully, my hip is starting to feel better, even if I don’t know what caused the problem in the first place!
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
Susan Egelko
I think you're raising a very important question: how much attention does one pay to symptoms? I think many of us with hEDS have a laundry list of acute pain incidents impossible to ignore, not to mention the centralized pain that unfolds with the traumas of life. But I lean towards thinking it's better to keep the sense of my body as normal vs. continual attention to the various aches and pains. I grew up before EDS was recognized fully in the medical field. So I was carefree with my body, even though I had terrible foot pain by the time I was ten. I benefited from the belief that I was normal physically despite many oddities in childhood (party tricks with my body, teeth moving too rapidly with orthodontia, major fatigue). And neither of my parents were protecting me from danger.
Constance Frye
I have EDS and suffered a fractured hip. I ended up with Bursitis in my hip, per the surgeon. 2018 and my hip hurts most mornings.
Kas
I happened upon this site a few years ago during the beginning of my journey with EDS Classical like type 1. In my case a close relative was found to have Veds in conjunction with Fibromuscular Dysplasia or FMD. I decided to seek out a genetic counseling to find out if I was a carrier just in case my kids needed to know or if they were to have children.
It was found I have one copy of the Tnxb gene and it was uncertain whether or not I was affected. I know that I definitely have hyper mobile joints having sprained my ankles many times, tore a ligament in my hip, instability of my upper spine that brings on migraines as well as countless other occurrences that have ended me up in a walk in center or emergency room only to have countless tests and Doctors that have no idea what is wrong.
All I can say is that at my age of 60 I am careful how I workout or hike because in my experience I have not met many Dr’s who have any knowledge of these conditions which is frustrating to say the least. Reading your newsletters has been very helpful and resourceful to me.