My story starts from being a child really, I was always very active, I danced, did gymnastics, fell, walked, went on long bike rides, and what not. I always complained it really hurt me and it took at least two full days of rest for me to recover after a dancing competition.
I was always told it was in my head, and that I was lazy and weak. I also got sick quite a lot, severe IBS, kidney, and bladder infections, but again I was weak. Besides this I had a normal childhood (ish) ha ha, until my period’s started when I was 10. The doctors suspected I had a blood disorder. They already knew my mum had EDS and Von Willebrand Disease, but they never put two and two together. I had loads of tests on my entire body over the next years, everything came back normal, the doctors were starting to think the same as everyone else, I was crazy.
I played a lot of sports, I loved sport and I played badminton for my school team. At the age of 15 I started having problems with my right arm after matches, It would double in size and feel broken, again the doctors couldn’t find anything wrong with it, I didn’t let it stop me, I learnt to play with my left arm instead.
As I got older my joints got more and more unstable, then my spine started become unstable. “It’s sciatica,” the doctors would say. Being only 18 I never questioned it, I just kept going back every time something else went. The only person who ever believed me was my Nana. She passed away from cancer when I was 20. That was hard, her and my partner were my only support at the time and she was my best friend, but I got on with my life. My spine and hips just got worse and worse, I knew this wasn’t sciatica but it never got addressed.
I became pregnant with my son at 22. I had a horrible pregnancy, hyperemesis gravidarum for 33 weeks and severe SPD. My obstetrician looked at my medical notes and said straight away that I had EDS Hypermobility type and my pregnancy was high risk because of the bleeding that it caused me to have. FINALLY! Someone was taking me seriously. But after I had my son, who is now three years old, the doctors wouldn’t accept the diagnosis I got from the obstetrician. I was shoved around from specialist to specialist. Diagnosed with joint hypermobility syndrome, Raynaud’s phenomenon, IBS, dysmenorrhea, menorrhagia, etc, etc. I knew it was all because of the EDS but nobody would listen to me, I was chronically exhausted all the time, I felt like I was falling to pieces. One good thing came from it though, I got referred to a really good physiotherapist.
For a year I had physio twice a week, and I was doing really well, my hips, knees, fingers, toes, elbows, and ankles still dislocated like crazy but I was gaining strength, going swimming again, and feeling better. That is until January 31, 2014. I got out of bed one day and I had pain that I have never felt before. I’m a damn tough cookie so I knew something was seriously wrong. My legs were paralyzed, I couldn’t move and it was agony. After an ambulance and hospital trip later and I was sent home. The emergency doctor at A&E gave me morphine and said you need to get your GP to get a MRI as soon as possible.
Two days later I went to see the GP, they wouldn’t listen AGAIN! Luckily my physio did, wrote a very stern letter to my GP, who then rushed me for MRI. I was then referred to a musculoskeletal specialist, then to a neurosurgeon. my L5 S1 disc has ruptured and died, killing my S1 nerve root with it. My L4- L5 disc is so massively herniated into my spinal cord, doctors aren’t sure how I’m walking around (badly and on crutches and not very far but walking none the less ha ha). Oh and since my spine is so hypermobile I now have arthritis in my vertebrae at the age of 26. My surgery to try save my L5 nerve root and to try reduce pain is in four weeks. I’m petrified but I can’t live like this, I can hardly leave the house most days, I want to be active again, for me and my son. I was upset because the neurosurgeon turned round to me and said because of your EDS chances are, you will need multiple surgeries over your life time, especially on your spine.
On the plus side through all of this I got a 100% diagnosis of EDS from one of my specialists, who I saw in July and I am now waiting to see a EDS specialist! I am so happy about this, he said he would write to my GP, tell them they have to start taking me seriously and that I am not insane!
All in all its taken 26 years to get diagnosed, a lot of my family members have fallen out with me because of it all, they are still convinced I’m just lazy and don’t want to work. I would love to be able to do normal things, I have to rest for three days just to go to the pub for a night! I’m planning on going to university when my son starts school, I won’t let my stupid body get the better of me forever. I have really supportive friends and a partner who helps so much. We have been together ten years this year. 🙂 It’s really tough when you are exhausted and grumpy and in pain and joints popping out all over the place, but I still do more than I should. Too stubborn for my own good. 🙂
Having EDS Hypermobility doesn’t just cause joint problems, it causes problems EVERYWHERE! Also local anesthetics don’t work and neither do painkillers because of the condition. I think having this has made me tough and strong, you shouldn’t have to get used to the pain but you do, It’s how you survive.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.