Ehlers-Danlos syndromes (EDS) - Jess's Story

Oh, wow how do you do bend your arms like that?! you really are double jointed aren’t you?! Geez you’ve got skinny, long toes and fingers, don’t you?! Wow you can do the splits?! Look at those bruises how did you get those?! You’re such a klutz! If I had a dollar for every time, I’ve heard any one of these comments… For the most part I’d just laugh it off or be proud of my party tricks and most likely be just as in the dark as to how I got those bruises as the person asking!

Truth is I am a klutz, I am accident prone, I’m the girl who plays Wii bowling and sprains her ankles (this isn’t a one off either its happened so many times if my GP saw me limping he’d literally laugh and say along the lines of ‘let me guess Wii bowling?) or it could just be walking along a knee gives out when I’m in a not so flat pair of shoes and boom my ankle rolls and another sprain. Oh there’s also been the time I played netball, a few days later I had chest pain so bad I couldn’t take a deep breath (it eased enough I could breathe with tolerable pain) fast forward like 3 months full of hospital visits, weekly GP visits, tests and turns out I had a slipped rib once it was put back in place I was good as new (still get them to this day, yes they’re painful but now I just pop them back myself 😊 )

These are just a few examples of some of the more memorable injuries in a very long list that doctors like everyone just attributed to me being accident prone which in their defence I don’t blame them. The reality is pain is a pretty much daily occurrence for me (admittedly in varying severity) and sprains are common if so unless it’s severe I generally adopt a it’ll be right approach and continue with whatever I’m doing.

Yet one injury changed all of that. I was walking along Christmas shopping and my leg had been painful earlier, but I brushed it off as muscle pains something not uncommon to me. Suddenly I felt my knee give out it went one way and my body went another and I fell forward luckily onto my mum in front of me but this time I knew I’d done damage the pain was immediate and more severe than any in the past. I sat down for a while then leaned on a trolley trying to put as little weight as possible on it (I’d driven an hour for this I was going to finish my shopping in pain or otherwise!). Once I got home, I knew I needed to get it looked at. I hadn’t been happy with my current physio for a while and messaged a friend who had seen one who she raved about so decided to try them, initially the first physio assessed me (it was a Friday) and put me on crutches then booked me into see his boss a knee specialist first thing Monday. Best. Decision. Ever.

During his assessment he noticed my tendency to be extremely flexible and was asking me a lot of questions about previous injuries, bruising etc I did wonder why all the questions but thought least he’s thorough. Once he finished, he said I think you might have Ehlers Danlos Syndrome (EDS) hypermobility has anyone ever mentioned this to you? That moment literally changed my life. No doctor had ever mentioned it and I’d never really heard of it, but he was convinced. I did some research and suddenly it all made sense, the bruising, the sprains everything! Even the Postural Orthostatic Tachycardia Syndrome (POTS) I’d been diagnosed with in years prior had links to EDS! It was literally the lightbulb moment and I was so excited that finally there might be an explanation for all of this!

As for my knee I had an MRI and found I’d torn my patella cartilage turns out the pain I felt was my patella partially dislocating (subluxing) and tearing the cartilage underneath.

In January 2018 I was officially diagnosed with EDS hypermobility.

EDS is a lot more than just hypermobility and causing subluxations and dislocations. It effects so much more, not to mention there are so many different types/variations of EDS that no two people who have it will have the same presentation, symptoms or associated conditions it’s totally individual which is partially why it’s so challenging to diagnose and manage. For me personally it’s pain, brain fog and fatigue that affects me most I would say and again it varies day by day so I have days where I am super productive and feel great and others where getting up takes so much effort and certain tasks are impossible. One of the challenging things about this is I don’t know when is going to be a good day and when it’s going to be a bad one so making plans can be a challenge. Also, as with a lot of chronic conditions being invisible including EDS and POTS unless I have strapping tape on or bruises people can’t see the pain or fatigue or the brain fog.

Have I had to alter my life plans? Yes slightly. Have I stopped comparing myself to others in seeing what they can do but I cant? No.. but I’m working on it! Don’t think I will completely but I’m getting better at it! Have people ranging from friends to medical professionals to colleagues doubted me? Absolutely. But I’ve found a lot of professionals who do believe me, and I can rely on to actively help me manage my symptoms/conditions. I also have an incredible group of friends who I can turn to and it truly makes the biggest difference.

If I could give anyone suffering with unexplained pain/symptoms or chronic conditions advice I’d say, it’s not all in your head! Find professionals that will listen, take you seriously and advocate for you and have knowledge in your condition. Talk to your friends/family having them to fall back on/distract you can be a blessing in disguise. Become informed but be open to suggestions from those experienced in your condition if you know what it is. Social media is great but also be aware of especially in support groups not getting sucked down the rabbit hole of competing for who actually feels the worse it can get toxic and mentally does you no favours use them for helpful advice and supporting others but remember its not a competition. Lastly reach out and know you are not alone!

Wishing all of you who read this all the best with more good days than bad 😊

- Jess

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