Hello, my name is Charlotte and I am 22 years old. My journey with JHS officially began when I was 13, but I am going to begin this story from the age of 2, when I started to walk. My parents have always told me that I was a lazy child. Once my brother learnt to walk, he could not be stopped. Even though he was slow and doddery, he was determined to walk everywhere he went. I on the other hand flatly refused, crying and complaining whenever I was made to walk somewhere. This went so far as to me still being pushed around in a buggy at the age of 4. Every time I would walk, I would complain that my legs hurt and I was tired after walking the shortest of distances. Understandably, my parents put it down to me being lazy and eventually refused to bring a buggy out with us, essentially giving me no choice but to walk (they also refused to carry me, despite my fits and tantrums).
From then on, I grew up just like the rest of my friends. I took dance lessons in ballet, tap and modern from the age of 3, played football for my school, rode horses and was a competitive gymnast. I loved sport. I often returned home with aches and pains, sprains and strains, but didn’t think anything other than it was me being clumsy (I am VERY clumsy). When I started gymnastics at age 10 I discovered that I was pretty flexible. I could do the splits relatively soon after starting, could touch my toes to my head and easily do a back bend. At the time I thought this was fantastic and my stretching conditioning was paying off. it made my training much easier and quickly developed my skills to competition level.
When I was 13, I had a fall on beam. As I threw a handspring dismount my left knee bent backwards on landing and I kicked myself in the hip. My leg hurt but I was able to walk so I thought nothing of it. The next day I woke up and my leg had doubled in size from swelling, to the point that I couldn’t distinguish where my knee was meant to be. I went to hospital for x-rays and scans and was told that I had broken my knee cap, torn the muscles, ligaments and tendons and had internal bleeding and fluid around the knee. I was put in a brace for the summer holidays.
It was when I attended physiotherapy that things started to become apparent. My physio assessed my knees and asked if anyone had ever mentioned Hypermobility to me. On answering no, he assessed the rest of my joints, asking me to bend in all sorts of directions to give me a Beighton score (mine was 7). I was given a leaflet on Hypermobility syndrome and was told to keep an eye on things after I had been discharged.
For the next 2 years, things remained pretty normal and I returned to gymnastics. Then I one day I bent over to pick up a coat hanger off the floor in a changing room and I felt an immense pain in my left hip. The colour drained from my face and I felt sick and faint. My parents rushed me to get some food and I began to feel better. Over the coming weeks the pain came and went. My hip was clicking and I could barely walk. I went to A&E and was told that my hip had dislocated and I was experiencing recurrent subluxations. The doctors were surprised that I was unaware of the dislocations and that it went back in by itself. I was sent to see and Orthopaedic doctor who assessed my hip joint. He asked me to do some tests for him and suddenly I remembered that I had done these before, with my physio. The Orthopaedic doctor confirmed what my physio said, that I had a Beighton score of 7, and he diagnosed me with Hypermobility syndrome. I was told that there wasn’t much that could be done about it other than having physio for my hip and managing the pain.
Over the next 2 years went past and the dislocations and subluxations were getting worse and I was having over 20 a day. I had to quit gymnastics and I was unable to take part in PE at school. I was in so much pain and limped when I walked. The pain would even keep me awake at night. I had MRI scans, Ultrasound scans, X-Rays (which showed I also had scoliosis) and blood tests, which all showed nothing was wrong. The final test was to have a guided scan. I had a local anaesthetic injection in my right hip, which didn’t work. So when I had the dye injected into my joint, it hurt. I then had another MRI. Finally the doctor was able to see what was wrong. I had torn the ligament away from the bone, meaning that there was nothing keeping the joint in place. A couple of months later I had surgery to re-attach the ligament. I was told that it was only day surgery and I would be home that night. Unfortunately we discovered that I was intolerant to opiate painkillers, so I ended u staying in hospital for 5 days, with only Paracetamol and Ibuprofen as pain relief.
6 months later, my Hypermobility flared up again when I reached for my pen in English and my left shoulder dislocated. My confused teacher sent me to the school nurse and I was put in a sling. I refused to go to hospital, in denial that I could have dislocated a shoulder by reaching for a pen. A few hours later and my hand turned blue and I finally went to A&E. It was confirmed that I has indeed dislocated my shoulder, which relocated easily in x-ray. Just like my hip, I had initial physio only for my shoulder to gradually have more and more dislocations and subluxations by things like just getting out of bed or brushing my teeth. I learnt how to relocate them myself so I didn’t have to keep going back to hospital. After 2 years my shoulder wouldn’t go back in it’s socket and spent more time dislocated than in place. Again I was sent for surgery, however this time I had to take a full year out from University. Unlike the key hole surgery I had on my hip, this one was major open surgery and I had a long recovery time. This time the ligament in my shoulder had stretched so far that I needed 80% of it to be removed. When I came round we tried different pain relief, but unfortunately I couldn’t have these either. Months of recovery followed, where I had intense daily physio to stretch the ligament to a normal range of movement (imagine stretching your arm to it’s full and having someone continually push it past that limit for hours a day – it was agony). Eventually I regained movement and strength. I will probably never have full movement in my left arm again, but at least it won’t dislocate anymore.
After my surgery I returned to complete my final 2 years of University but I have had many more flare ups. I have pain in my right knee that causes me to limp when I walk, my right shoulder has begun having subluxations, I have dislocated my jaw 3 times by talking and sleeping, I can’t write due to the pain in my wrist and I have days where my ankles are so painful I can’t walk and I have to stay in bed. I feel constantly exhausted which makes it difficult to concentrate in lectures and on my assignments and I am in pain when I walk or drive. Due to my intolerance I cannot take painkillers and the pain gets worse when it’s cold or rainy. The only way I can explain it is it’s like having the flu everyday, with every joint aching. But when I have a bad joint, it is worse than breaking a bone. I have broken my knee, 3 ribs and my wrist and none have been as painful as my joints can get.
I am constantly told by people that there is nothing wrong with me because there is nothing visible for them to see, but on the inside I am in agonising pain. My illness is invisible but that doesn’t mean it isn’t there. I have good days and I have bad days and I refuse to let my condition control my life.
So that is a snapshot of my journey with Joint Hypermobility Syndrome up until now. Let’s make the invisible, visible.