Ehlers-Danlos syndrome is widely known for the chronic dislocations and subluxations as well as chronic pain. People hear that first part, but unless you’re experiencing it firsthand, no one really thinks about the snowball of symptoms that comes with simple instability. When your tendons and ligaments aren’t doing their jobs, something has to in place of them. I mean, you’re still standing, right? Yes! I call that the “compensation pain.” It is chronic and I also refer to it as the baseline pain. Ehlers-Danlos people experience many different types of pain, and usually all at once.
Compensation pain is when your tendons and ligaments are like “shredded bubblegum” (no elasticity) so your muscles have to work way overtime just to hold your body together. Think about that pain when you’re holding something so heavy for a while and it gets uncomfortable so you want to put it down, but you can’t. You keep holding it waiting for the sweet relief of dropping the weight but you can’t just quit yet. You start shaking and it gets a little embarrassing because you look and feel weak. The weight of this item is really wearing you down and you’re really not sure how much more you can take.
Now imagine that being your own limbs. You don’t get to just put it down. Imagine having to hold your arms in their sockets or having to stand just right so your hips don’t give out. Imagine having to physically keep your head held up and what kind of pain it is on a daily basis to have to bear the weight of your own limbs because your tendons and ligaments are on some permanent vacation. That is what this is. I physically start shaking because of how hard my muscles have to work just for me to exist. My muscles stay in knots, and those knots have knots. Ehlers-Danlos patients are fighters.
Sometimes, we relax our muscles without thinking about it. When EDSers relax, we are almost guaranteed to dislocate something. It’s quite possibly one of the trickiest invisible illnesses out here. When my muscles are working to hold me together, I can function pretty normally for the most part. I’ll use small children for this example: We physically prepare ourselves to pick up a small kid and we have no problem whatsoever doing so because we subconsciously braced ourselves, physically. We have time to really tighten our muscles to lock everything into place before we go to pick that child up and all is well, no problems. Now, it’s a few minutes later and I’m on the phone with my back to the kid while he’s playing with his friends. My guards are down, shoulders are relaxed and I’m not prepared for any physical contact. The kid runs up to me and grabs my arm and pulls with all his might. Shoulder dislocates immediately. I didn’t have a chance. My muscles were not consciously prepared to protect what my tendons and ligaments should have been there to protect involuntarily. When my muscles relax, it leaves my joints and nerves vulnerable. It is a lose-lose.
When a nerve gets hit, that’s an incredible type of pain. With Ehlers-Danlos patients, it’s just a part of our everyday life. I watch people hit nerves and scream and cry. I can’t help but wonder what it’d look like for them to spend a day in a body with EDS. Nerve pain has different feelings and sometimes the feelings are jumbled all together at once. It can feel like you’re being electrocuted or like you’re being set on fire at first, but what gets me is the pins and needles sensation, or the muscle weakness where you feel like you may collapse when you’re not even standing. When it’s really bad, you experience a limb being temporarily paralyzed. There are mornings when when I wake up and I can no longer move my arm because I slept on a dislocated shoulder on accident and a nerve got pinched. It is the scariest feeling, waiting on your arm to function again.
Those two basic types of pain are the ones I experience on a daily basis. There are many different types of pain that we go through, but those two are the ones that I would have to say consume my thoughts daily. Ehlers-Danlos syndrome no doubt is a true invisible illness. When I fight, no one knows the first thing about what is going on in my body. Hopefully this gives a little more insight for those who could never understand, and gives reassurance to those that know very well about what I am doing my best to explain right here. We are EDS strong.