Finally getting the Ehlers-Danlos diagnosis brings a bag of mixed emotions. On one hand, it’s such a relief to know why you have all of these problems! Reading about others like you, and possibly connecting online, really makes you feel like you’re not alone. You could spend days reading comments and stories and thinking “Me, too!”.
On the other, it’s a genetic condition. Most of us, deep down, are kinda hoping for something that can be fixed. Like, “Ok, we need to know what’s causing all of this so we can fix it.” Except, sometimes you can’t fix it. When you realize there is no “fixing” and only “managing”, it’s a bitter pill to swallow. The only thing that helps it go down a little easier is connecting with other zebras and sharing tips and trips among the herd helps make managing easier.
Still, when you look around on a bad day and wonder “Is this the best I can hope for?”, it’s pretty tough. On top of that, the diagnosis that often took forever to get can quickly become the reason you’re passed along. “Fatigue? Oh that’s from your EDS. Can’t help you there.”
Think I’m exaggerating? Here’s a terrifying example. My zebra, at 13, could not walk without forearm crutches last year because of horrible nerve pain that would shoot down her leg. Even with them, she couldn’t get far and used a wheelchair for long distances.
We saw the head of neurosurgery at a top Children’s hospital, on top of her neurologist and other experts. Basically, we were told it was her neuropathy (linked to EDS) and there was nothing they could do for her that they weren’t already doing. You can imagine how well that went over.
During this, she’s in PT, and has been in PT off and on for years. More on than off. Somehow, they all missed it. My guess is because nobody bothered to look! Instead, they blamed it on the easy answer and just assumed it was her neuropathy and washed their hands of it.
What was this dastardly issue keeping my child from walking? A muscle. Her TFL muscle to be exact. It was in spasm, horribly, from trying to hold her hips in place. Several nerves run through that muscle and were all compressed, causing the pain.
We found it by accident. Her hand hit the muscle and she screamed, literally, in pain. You could barely touch it, and I mean a teeny tiny amount of pressure. I immediately looked up what was there and then learned all about the old TFL muscle. Sure enough, after a painful, horrible two weeks of massaging out the spasm, she could walk again. Miracle? Nope. Just muscles and massage.
What’s scary is knowing that had we not found that, she would still be wheelchair bound and probably in much worse physical shape, because her docs didn’t want to dig any deeper instead of making the easy assumption.
So beware the downside of diagnosis. Make sure they rule out other causes. Joint pain may be normal, but that doesn’t mean you can’t fracture or sprain like everyone else. Neuropathy may be part of the package, but that doesn’t mean nerve compression can’t come into play. You get the idea. Don’t let your doctors fall into that trap, or let yourself fall into it as well. Sometimes EDS is to blame. But sometimes it’s not.