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The Realities of My Life With Hypermobility and Fibromyalgia

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I was never healthy — always having some kind of cold or infection, feeling tired or sore. I never wanted to do what the rest of my friends were doing, despite being a kid, a teen, a young adult. All I ever really wanted to do was sleep. So the diagnosis of fibromyalgia didn’t really come as a huge surprise. It was just putting a name to something that I’d known had always been there. What I didn’t realize was that despite getting this diagnosis, despite having a light shined upon the problem, the confusing journey wasn’t over yet.

I’d had fibromyalgia for just over a year when I first dislocated my knee. It was horrific, the worst pain I’ve ever experienced. I knew instantly what had happened; even through the searing pain, I had processed the problem before I’d hit the floor (or sofa, technically). Through the pain and the screaming, I managed to stammer to my mum to call the emergency services and get me an ambulance, because instead of being where it should, my knee was now down a couple of inches and closer to the back of my leg than the front.

Three hours, two bottles of gas and air, five paramedics and a lot of tears later, we finally managed to get my knee back in. As the immediate pain subsided and moved into bruising and swelling, my thinking cleared and focused again on the one thought that had come up so much while I was huffing down the gas: “Why did this happen to me? Why do these things always happen to me?” It wasn’t rational thinking, but after that day, I wasn’t feeling particularly rational. All the doctors reassured me it was just a fluke, I had moved in a dodgy way — twisted from the knee with my foot planted on the floor — and as long as I avoided moves like that I’d be just fine.

Oh doctor, how wrong you were. Looking back now, two and a half years on, I cannot help but laugh. Because, while testing for a different illness, my doctor discovered a raised blood test marker for connective tissue disorders — hypermobility. Yep. The tissue connecting my joints was weaker and that meant I was at a higher risk for my joints dislocating randomly, through injury, poor movements and so on. The doctor didn’t even tell me until several months later when I asked why I kept dislocating things — don’t worry, didn’t need that info, thanks!

After that first dislocation, I’m not going to lie, I was terrified. I never wanted to feel that pain again. I lived in fear of dislocating something again, ending up in agony a second time. I truly didn’t think I could take it. I made sure to lift my foot before every step, move my legs in straight lines, never twist when standing, take every single precaution. And then it happened. Just after my birthday, having gone away and spent the entire time worried I may injure myself while out of town, I came home elated that it had all gone smoothly — and then unpacking, reached for something behind me, turned on my knees and “bam!” dislocation. Unlike the first time, it went straight back in and caused much less pain, though it did take my breath away… but it also managed to take away a little bit of the fear too.

Now, I’ve lost track of the dislocations and subluxations (partial dislocations). I’ve dislocated both knees, both elbows, both wrists, an ankle, a toe and a thumb. My hips and shoulders haven’t gone yet, but I know they will eventually, and I’m not looking forward to those. I have to decide whether an activity or outing is worth the potential injuries. Skydiving is definitely off the list, but so are things like rollercoasters, dodgems, pretty much any fairground ride, and quite a lot of sports and activities. Hell, even yoga is taking my chances some days.

If nothing else, it has given me some funny stories. How many people dislocate their thumbs putting on their bras? Or reach for something under the sofa and wrench their elbow out of joint because they overstretched? By far, the best one was my friend landing a kick solidly on the edge of my wrist when she jumped up one day and knocking it out of place in the process. She didn’t even feel the contact, whereas I went white as a sheet and left the room.

I never anticipated having to deal with hypermobility. I never wanted to. But now that it’s here, I won’t let it stop me from doing the things I truly want to do; I just have to decide what things are worth the pain and risks.

Getty image by Kittiya.

Originally published: December 24, 2019
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