Beyond the party tricks of being able to bend in ways that your peers cannot, hypermobility sucks for most people. By the time I was 13, I had already dislocated my left knee and experienced lock jaw. I was always in pain, only to be fobbed off and told it was growing pain because my joints hurt. What can you tell a child of 10 whose joints always ached like geriatric arthritis? Nothing more than it was just a phase and you’ll grow out of it, I suppose. Well, all of my joints, except my elbows, are hypermobile and hurt. I didn’t grow out of it.
Disclaimer for obvious reasons: I am not a doctor. I am a patient. The ideas and opinions expressed in this blog are my own. Do not attempt anything without speaking to your primary care physician first. If you suspect that you are hyper mobile, tell your GP and they can refer you to a rheumatologist.
Research on hypermobility and connective tissue disorders has increased over the years, and with that comes the hope of doctors listening. If you have hypermobile joints, you’ll know the dull pain and constant fatigue that plagues your day. You’ll probably also know the pain of trying to get doctors to listen to you, unless you have been very lucky and landed with a good doctor from the start — do not let them go! But I have not been so lucky and now I find myself at my supposed “prime” of my life, yet I am writing this at 10am, from my bed, because I am in too much pain to sit at the desk.
Generally, there are two overall classifications of hypermobility. The first is the type that many people have: extreme range of joint motion with no or little pain and no tightening of muscles. Then you have the opposite: wide range of joint motion, beyond the norm, but with pain in the joints and tightening muscles that overcompensate for unstable joints. You can guess which type I have.
The pain is real
I am 32 and have multiple joints that have degenerative joint disease from hypermobility, including my ankles, knees and jaw. At the time of writing, my jaw is throbbing; a pain which has been constant for the last two weeks and has been bad enough to keep me awake at night. It takes about two hours in the morning to get off the bed without gravity doing its thing and sending searing pain down the length of my back, including my ribs. And once my feet hit the ground, I feel the sharp pinch of my toe joints as they attempt to take the full weight of my body but remind me of the extra five kilos I’ve gained in the last few years. I am at a healthy weight; but gods know that I have to be as slight as a skeleton to lower my pain levels in the weight bearing joints. Finger joints flare when I type, and both wrists pinch constantly. And while I’m experiencing all of this, my upper back reminds me that it’s angry with the world while my jaw brings everything together with a throb as consistent as a metronome.
I have a hard time explaining this to someone who is normal and has never experienced joint pain on this level. My partner is lucky in that he doesn’t have pain that turns his day inside out; but over the heatwave, his fingers swelled a bit and became uncomfortable and he got a small taste of what I feel like day in and day out. While this isn’t on the same level, he understood the feelings of “it hurts to type” and “I can’t stand up without pain”. As an invisible condition, it’s hard to explain to others who have no idea.
I’m not going to lie, my health has really gotten to me this year. It’s the worst it’s been in over ten years; which is not good. But I continue to push through the noise and just do what needs to be done to keep my head above water. It’s not all terrible. I’m alive and overall in good health and I’m in a position where I can work around my condition. I pace all day long, listen to my body and do what I can to reduce the pain by limiting overreaching. Not many people are in my position and I’m grateful for that.
Now, onto doing some work, while I can still type today LOL!