A to Z of EDS: J is for Joints

First of all, I need to mention my newly discovered blogger Bitey Zebra is also doing an EDS alphabet at the moment, so go check it out! It’s fun to notice the similarities and the differences. 

And so we move on to Joints. A milder condition, which may or may not be the same as Hypermobility EDS (most experts say it’s the same but there is still controversy about it) is Joint Hypermobility Syndrome. So, as you can see, the word ‘joint’ being in the name hints at its importance. In fact, Hypermobility of the joints is one of the major diagnostic criteria for all types of EDS (though this may be limited to small joints such as found in fingers for some types such as Vascular EDS).

When I first decided to investigate the chronic pain I was in, I thought it was sciatica. I had an MRI and saw an Orthopaedic Surgeon. Who announced I was fine ‘but remarkably flexible for your age’. But thinking afterwards about my pain, I realised something I’d failed to mention to him or anyone else. The pain wasn’t ‘in my leg’, it wasn’t any kind of shooting pain. It was a dul ache. In my hip. In my knee. In my ankle. Yup, it was the joints in my leg that were affected. As I also have psoriasis, it was natural for me to get checked for psoriatic arthritis. Nope. Didn’t have that. It wasn’t any form of arthritis. As coeliac disease can effect the joints, I got tested for that too. Nope, not that either. At this stage, my pain had been diagnosed as ‘fibromyalgia’. But I was sure it wasn’t that, as it was definitely my joints that were effected more than my muscles or nerves. Plus, most of the pain was unilateral, on my left side, and the pain of fibromyalgia is mostly bilateral, effecting both sides. So, I continued my search, but tried to narrow it to conditions that could cause joint pain. 

It would be two whole years before I would first hear the word ‘Hypermobile’. And that was from my son’s OT. To explain his difficulty with handwriting and awkward gait. So, after 36 years, I finally learnt that the range of movement in most of my joints was greater than usual. I Googled ‘hypermobility’, as you do. And discovered ‘Joint Hypermobility Syndrome’. And discovered EDS Awareness Ireland, which was later joined by Irish EDS and HMS. The advice I got from the helpful folk in these support groups led me to an EDS-aware rheumatologist and finally the correct diagnosis. 

I had intended on writing about all the stuff that can go wrong with our joints. The multiple dislocations, subluxations (these are partial dislocations), the trauma and pain. But instead decided to show how one symptom, joint pain, was the clue that finally led me to unraveling the mystery of the chronic health issues I’ve suffered from my whole life. 

So, there you have it. In EDS, joints are a very important part of the picture! 
[image of a black background, with the words ‘J is for Joints’ in white.]

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