Living with EDS part 1

After many years of questioning the amount of pain I was suffering on a day to day basis I am so glad to have finally gotten a diagnosis. Although many people over the years looked at me and called me lazy or unfit and used it as an excuse. I am aware this is a personal post but it is so unheard of and under diagnosed, people just put it down to double jointedness and that is it, for some people it is just that but for others its much more. 

Looking back it all started in my early teens and I think puberty didn’t help with the growth spurt (yes I did have one). To get the full information I have to go right back to before I was born.

Basically my mum struggled carrying me and went into labour at 16 weeks. My mum was kept in hospital and given tonnes of steroids to boost and stunt my growth. I was then born over a month early, as early as doctors would allow my mum to be induced into labour with fears of my lungs not developing. I was born healthy and at a good weight. 

Fast forward to when I hit 11 or so I had my growth spurt and was always in pain but it was put down to puberty. I would be in so much pain with my neck as well as my feet to the point I couldn’t walk. After tests it revealed I had extensive tissue damage yet no real explanation as to how. 

After then fracturing my wrist a year later I had x rays and they saw something odd about the shape of my bones in my arm so then x-rayed my other arm and legs. They concluded that one leg was more than averagely longer than the other and that all of my main bones were curved and not the shape they should be but it shouldn’t be a problem as I had no issues before. But I didn’t know the pain was related at this point.

A couple of years later I was involved in an accident and I fell and was in agony with my knee. I kept collapsing and I was taken to hospital which they revealed I had dislocated my knee several times and gave my crutches and sent me away. 

I was referred to a rheumatologist as four years later I am still suffering with tonnes of pain and several times a day dislocations. I usually am in pain for a day or two and it goes but it was occurring so frequently. They made me do a little test and told me i was extremley hyper-mobile. And that I was suffering with Ehlers Danlos Syndrome. 

After a nasty fall and dislocation I thought the pain would subside within a few days like it had previously done. After four days of agony I called 111 and they wanted to send paramedics to assess me. Two lovely guys arrived and were not happy that I left it so long. They took me to Margate hospital by ambulance and after hours of waiting and multiple x rays I was told I had also displaced my pelvis. Which was contributing to the constant pain and explains why I was struggling to sit comfortably and walk even a few steps. 

Living with EDS is not easy at all, for me at least. Many people live with it and don’t realise they have it, 98% of the population that suffer have inherited it but I am one of the 2% as its down to my circumstances when I was born. But it entails so much more than dislocations. 

In part 2 I will explain more about EDS and the different types and what it entails. 


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