As a child I was always very flexible. I started off horse riding as my mother had and really loved it. My brother started Karate at the age of 3 and as soon as I was old enough I wanted to do it too! So finally, my parents gave in when I was 7 and let me join and I did extremely well. In the first year I had won competitions and trophies and in the second year I was competing in the world and european championships. By 9 I was a black belt, the youngest female black belt in this particular martial art and I remember being in the paper for it. Then, I saw ice skating on TV and fell in love. After much begging, my mum finally caved and let me go ice skating to see if I would like it. A friend she worked with, her daughter skated so asked if she would take me. As soon as I stepped on the ice, I whizzed across and bumped into the other side. The speed and thrill had me hooked. I had roller bladed for years so got to grips with ice skating pretty quickly as I found it was very similar.
My mum let me start a learn to skate course and I wanted more. By this point, I was still doing Karate and horse riding so something had to give. I gave up horse riding and the more skating I did, the less Karate I did. By 14 I had quit Karate and concentrated all my efforts into ice skating. I was having private lessons, routines and competition dresses made. I competed nationally for my ice rink and won quite a few trophies and medals. All this time becoming more and more flexible. I was knows for my spirals and spread eagles (I will explain later). Having very flexible knees and hips made these very easy for me and I couldn’t understand why others found it so hard. Skating didn’t generally come easy, the jumps alone I cannot even begin to put a number on the amount of falls I took. I even broke my nose once, face first into the barrier… a little embarrassing to say the least! I used to train up to 9 times a week around 2 hrs each training session. Before school so up at 5am and after school too. I kept up with my school work but I wasn’t very academically minded like my brother. My brother would read something once and remember it. Highly frustrating for a little sister I can tell you!
Before I forget, the ‘spread eagle’ I mentioned earlier is this:
In 2002 my coaches students and I competed in Boston Massachusetts. In the singles I came first and in the group we came second. We all did extremely well, I think the judges like us British girls. During my skating career, I had suffered with bad backs, Achilles tendonitis, I had cortisone injections in places I really didn’t want them. A lot of people would put this down to wear and tear but not at 18. Yes I had been active and so are a lot of other people and they were OK. You can see the bendy knees here!
At 19 I was involved in a RTC. I was at a zebra crossing, waiting for someone to cross when a car hit me from behind. I remember seeing him in the rear view mirror and bracing for the impact. My car lurched forward and the person crossing the road ran. The car that had hit me had just come from a round-a-bout and was doing 40! I remember the pain in my neck and shoulders. The back-end of my car was a mess, the boot wouldn’t go down it was all crumpled and smashed. apparently the sun was in his eyes…
Ever since that day, I have never been the same. The shoulders got worse and I had cortisone injections in them multiple times. Ultrasound guided injections in my Achilles tendon, ultrasound treatment in my knees, became lactose intolerant, diagnosed with IBS. I couldn’t understand what was doing on. I felt like my body was trying to fall apart on me. I had almost given up hope of any real diagnosis and was just going back and forth to the doctors for help, pain medication, pain management, sleep problems, stomach reflux and more. I felt like a zombie, constantly tired and unable to function. This went on for 10 years. Finally, I saw a podiatrist who sat me on the bed and she looked at me funny. My legs were straight out in front of me but my feet were pointing outwards. She said I was hypermobile without needing to look into this further, she made some insoles for me and that was that.
This was all I needed to hear. This planted the seed for much more research. Looking up symptoms on google, searching for hypermobility and I discovered the HMSA charities website. I started reading about joint hypermobility syndrome and Hypermobility Ehlers-Danlos and thought…. THIS IS ME! All the joint pain, fatigue, muscle pain, stomach issues and more were explained in front of me in black and white. I couldn’t quite believe what I was seeing. I printed off some of the information off their website and marched on down to the doctors again, this time with a purpose. I asked to be referred to rheumatology as the HMSA website said that they could diagnose me. The doctor read the information and agreed and I was sent off to Peterborough hospital within the month. The rheumatologist there did the beighton score on me 7/9 and asked me lots of questions. Took some blood and referred me to physio. I was confirmed as having joint hypermobility syndrome. The syndrome was the important word as this explain why I was in so much pain. I was given some information booklets and sent on my way. A week later I was called into the doctors and was informed that the bloods they took at the hospital showed I had a very low vitamin D deficiency. This can also contribute to the joint pain I was told. I was out on a vit D supplement.
A year on and things were not getting much better. I had been reading more into EDS and what it was and the comorbities seem to match the problems I was having. I asked my GP for a referral to see a geneticist and this was the best thing I ever did. I don’t care that at 30 years old I wanted my mum to come with me to the appointment. I was scared and didn’t know what to expect. The appointment was an hour long. The first thing she did was measure my arm span and body length to rule out Marfan syndrome. She then asked a lot of questions on family history which was where my mum came in very handy. It was fascinating to hear how ‘acrobatic’ she called it, she and my nan were as children. Sitting in the W position and being able to put their legs behind their heads! This ‘bendiness’ seemed to run deep through my family history. My mum has had semi- detached retiners in both eyes and had arthritis in her back and hips. My nan has had both shoulders replaced. I can see where I am going to end up! I was confirmed to have hypermobility EDS and from there I was given all the treatment I could need. The GP referred me to physio again, pain management clinic, EDS specialist in London, CBT and more.
It may have taken me 11 long years to find a diagnosis, I am hoping with this blog and my experiences this will help others get a quicker one. If any of this sounds familiar, go to your GP and ask for the referrals. Check out the HMSA website for a tonne of info on the EDS/JHS. A lot of the pain I experience is due to micro/macro traumas. The hyper-extension causes traumas which in turn cause pain.
I hope this has been some help to you 🙂