Living with Hypermobility Syndrome is no laughing matter, unless of course you are tickled by chronic joint pain and constant aches. The chances are if you are a sufferer, you know that there is little hilarity in this flexible monster. Having been diagnosed just over a year ago, I am still finding out all about the perils of my hypermobility. Never in my wildest dreams did I imagine that twisting my arms all the way around to the delight and disgust of my school friends and showing off with my bendy thumbs and legs would culminate in a massive pain in the neck. Literally. I thought being ‘double jointed’ was just a funny party trick and once won a giant lollipop in a student union bar for showing off my crazy joints. The glory days are over though. No more giant lollies or freaking people out on trains. I am yet to find a good way to manage pain, I am unsatisfied with physiotherapy advice and exercises and I still can’t carry beautiful oversized bags around on my long suffering shoulders.
My pain started in my right shoulder as a sharp stabbing feeling every time I took a deep breath or stretched. Eventually I went to my GP who investigated all manner of causes from chest infection to blood clot and eventually settled on a torn rotator cuff. Wrong, wrong, wrong. Unfortunately this was only deemed wrong after I had a large needle put into my back in the form of a cortisone injection. I did however get the afternoon off of work, where instead of sitting at my desk and wondering if anyone would ever fix me, I did it on the sofa while eating approximately 7 slices of toast. Every cloud.
When I was eventually diagnosed by a rheumatology specialist my pain had spread to the other shoulder and my right hip. My hip had actually completely stopped me walking on several occasions. Nothing says ‘tough day’ like limping home in the rain sending SOS texts to friends and family who think you are completely mental when you request they come scoop you up from the pavement outside Mcdonalds.
I had already worked out that it was hypermobility by stumbling across a case the same as mine and doing some extensive googling and reading. Under-diagnosed and with not enough sympathy, HMS and EDS sufferers are slowly stepping into the light. More coverage and more individual cases are getting lots of attention on social media sites, especially Twitter. This is hugely comforting. When I was defeated by a Sainsbury’s baking potato that I was trying to peel on Sunday because my shoulder decided it was against the making of Shepherd’s pie, at least I knew I was not alone. I am keen to learn as much as possible about hypermobility and indeed EDS, so don’t be shy.
