Finding What Works For You: My Journey with EDS

I have a disease, or a syndrome, or…I don’t really know what to call it. “I’ve got this thing called Ehlers Danlos Syndrome,” is what I usually mumble to people when they ask what’s wrong with me. Otherwise it tends to go unmentioned. Partly because I don’t want to be seen to be whining, and partly because when I do mention it people dismiss it as something that isn’t that serious because, I suppose, they don’t understand it. I barely understand it myself after years of living it, so how am I meant to explain it to anyone else?

The problems began when I was 13 and started my period. The first few were fine, and then, what must’ve been my fourth period, was anything but.

It was New Year’s Eve and I was at a school friend’s sleepover. We stayed up late chatting and doing whatever it is teenage girls do at sleepovers, and eventually all went to sleep in our sleeping bags in the living room. At 6 am, I was woken up by excruciating abdominal pain and it was all I could do to drag myself to the bathroom before I start vomiting from the pain.

That was the beginning of it, and it’s been pretty much been downhill since then. By the end of that year, I had been put on the pill to try to help with pain, but by the end of the following year, the pain was constant and consistent. It was worse with periods, which I ended up hospitalised by whenever I had one.

I must have visited every gynaecologist in the county, and most in the surrounding ones too. I had a laparoscopy in December 2005 to check for endometriosis, but none was found. The ultimate solution provided by doctors was “we aren’t really sure why some people get this and others don’t, but it will get better with age”. I was given a repeat prescription to co-codamol and anti-sickness tablets, and just had to struggle along as best I could until I hit that mysterious “age” when it would be better.

Meanwhile, I was also contending with an ankle injury that I got during hockey training. I was on and off crutches and signed off and back on to sports pretty much monthly. Eventually, after a couple of years, it got to the point where I wasn’t able to run at all and once again I was the subject of lots prodding and poking by physiotherapists and a surgeon. It was from the physio that I first discovered I was hypermobile.

I can’t remember if I had ever heard that word before then, but it is now at the forefront of my vocabulary.

For years, all I knew about hypermobility was the Beighton test for joint hypermobility: I score seven out of a possible nine, with anything above four indicating hypermobility. I knew that my joints bent a lot, or wiggled around a lot in their sockets and sometimes had the tendency to sublux (partial dislocation), but that was it.

There are three related but distinct syndromes. First, there’s hypermobility; a person can be simply hypermobile, without having joint hypermobility syndrome (JHS). Second, JHS is used to describe hypermobility plus chronic pain and chronic fatigue. And then third, there’s Ehlers Danlos Syndrome (EDS), of which there are seven different types. The type I have is EDS-Hypermobility Type (EDS-HT). This is a step further again than JHS, and it is thought that it includes additional symptoms such as gastrointestinal, autonomic and skin related issues. I say it is thought that it includes these symptoms since there is not a universal opinion amongst medical professionals, and it is a topic of ongoing debate and research.

It’s a combination of all the doctors I have seen over the years, information I have garnered from a variety of specialists and physiotherapists, plus the research I have done myself over the last three years that has culminated in an EDS-HT diagnosis; a large part of the issue being that most doctors don’t know enough about EDS and all the related symptoms to diagnose it in the first place. As well as the more ‘well-known’ EDS-HT symptoms I suffer from, such as joint hypermobility, easy bruising, gastrointestinal and urinary dyfunction, and postural orthostatic tachycardia syndrome (POTS), I discovered that my at times allergic-type reaction to alcohol that resulted in me being taken into A&E in an ambulance last October is also linked to EDS – as documented on a recent episode of Grey’s Anatomy!

When I first injured my ankle in 2002, I was told by my hypermobility physio that I had to avoid yoga as I already ‘bend too far’ and don’t need to stretch more.  And so I avoided it totally for ten years. After three ankle operations, it was evident I would never be able to run again. I’ve always felt like I would really enjoy yoga, and with most exercise no longer a possibility for me with my ankle I decided, tentatively, to try yoga and just be mindful of my joints and not stretching too far. My only regret is that I didn’t try it earlier.

After twelve years of illness, and following an operation in October 2014, I became acutely unwell and was no longer able to practise yoga. When I was recovered enough to do so, and under the guidance of my physio, in December 2016 I started yoga again; effectively from the beginning. I decided to document my journey on Instagram to raise awareness of both hypermobility and EDS.

Not only does yoga make me so much stronger, which helps to hold my joints in place and prevent them subluxing, but it also makes me feel much better in myself.

Through this journey, I have discovered so many things within the practice of yoga that can help with my symptoms. Iyengar yoga is perfect for me because it concentrates on alignment. I use props like belts and blocks to protect my joints and prevent myself from overextending, while still allowing myself to strengthen and stretch my muscles carefully. Not only that, but Iyengar yoga helps to improve the functioning of the circulatory, digestive, nervous and respiratory system and activates internal organs. I have noticed improvements from practicing in both the short- and long-term.

Through this experience, what I have learnt, above all else, is that you know your body better than anyone else; doctors included. You are the one experiencing the symptoms and you also know what makes them better or worse; regardless of whether that ‘fits’ with what anybody else thinks should happen.

Reference:

https://www.ehlers-danlos.org/about-eds/types-of-eds/hypermobility-ehlers-danlos-syndrome/