Joint Hypermobility - chronic pain champions

What is it like to have joint hypermobility syndrome (or ehlers danlos hypermobility syndrome) on a cold icy-rainy day??


Yeah, kind of like that.

What is joint hypermobility syndrome?

What it feels like

It's a hereditary condition where your joints are over flexible (double jointed). Lots of people have it. Only about 10% of people experience pain from it.

Have you ever had a rubber band that was over stretched and just won't go back to it's original shape? That's what your joints and ligaments are like with HMS.

There's still not a lot of understanding about what causes it. Something to do with lack of collagen, stuff, blah. But, ultimately, the soft tissues in your body (eg ligaments, skin) don't work so good so your bones can shift and bend in ways they're not supposed to. Great if you're a dancer. However, for some of us mooks, it's like having your body pulled apart constantly. It affects little things like turning your head or sitting up. You can still do all these things. It just hurts like hell because my muscles are working over time and cramping because they're doing the work of holding me together (which is what the ligaments are supposed to do).

What's the craic?
Well, it's a hidden 'disability'. People don't believe you because you look healthy.

For me the hardest part is the exhaustion. I feel really sleepy a lot because I have to concentrate a lot to hold my posture, and mostly, not flip out on people because I have a muscle spasm every time I move. You also twitch a lot in your sleep from muscle spasms so the quality of your sleep is quite poor.

Me - a hypermobile hero

Sitting up all day at a desk at times can feel like running a marathon because it is a test of endurance. Now, imagine running a marathon while writing a press release, talking to people nicely and (trying) to be helpful.

Basically:
Chronic pain + not flipping out on people + living your life = Supernatural bad ass


What do I do?
On days like today I remind myself that I'm a beast at living - this world is my bitch. People with chronic pain are f-ing champions. If I get through the day without crying, screaming at someone or just plain giving up and falling over, then I'm a bloody superhero.

I will go home, cook myself some food (maybe wash dishes) and stretch, do some weights and relax. I'll lie down for sleep (which takes a helluva lot of effort when your back and neck are sore) do my breathing exercises and hopefully not wake up too often in the night when I roll over. And then tomorrow I'll go to the gym and exercise through the pain to strengthen my muscles because staying in shape, despite the desire to never move again, helps to keep this pain from conquering me.

I want to toast anyone who is living like a boss despite chronic pain. Even if it's just keeping your house clean you are kicking ass. Even if it's 'Hey, I didn't scream at anyone today,' you're doing great!

To my brethren with joint hypermobility  keep rocking and EDS. You are awesome.

Ehlers Danlos Hypermobility Syndrome (EDS): This and 'joint hymobility syndrome (HMS)' are very closely related and the diagnosis to differentiate between them can be up for grabs. HMS can be a symptom of EDH so get it checked out as the complications of EDS undiagnosed can be extreme.