Now, thinking something is wrong with me is not necessarily the most positive outlook to have, and you’re right, I should lighten up. But, it simply cannot be ignored that my body is a bit odd (or a lot odd, depending on what you classify to be, well, odd).
It really became a problem when I was nine-years-old, though I do suspect I had symptoms before then. I noticed that my shoulders would crunch and click. It was funny at first, a party trick, making people squirm at the unnatural noises coming from my shoulders, I used to be able to make one cousin leave the room in seconds, which was a powerful thing indeed for someone who was nine against a fifteen-year-old. My parents would roll their eyes at me and tell me that it probably wasn’t good for me, and I would just roll my eyes back at them. What did parents know?
One night my brother and I were fighting, not a horrible fight mind, more like the tickling sort, and he jumped on me. I could not fully articulate the pain, even if I wanted to. All I really knew was that my left arm, and more specifically my shoulder, did not look right.
It was dislocated. Now, my little brother is definitely not to blame for my dislocation, to be honest, I think any force to my shoulder would have done it and it was only a matter of time; I was an active child and it would have been inevitable really. The hospital told my parents that I should be able to do most normal activities after two weeks and after twelve I should be fine. So off we went, returning to the hospital for one or two physio sessions, but otherwise everything was fine. Until it dislocated again.
Before long, my shoulder was dislocating all the time, for sometimes the most ridiculous reasons: rolling over, lifting my arms up too quickly and even shrugging could trigger a dislocation. By the time I was thirteen my right shoulder, not one to be left out, had decided to join in too. My physio had decided by that point that I probably had flexible joints, or hypermobility. Hypermobility simply means that you can move some or all of your joints more than most people can. It is often thought as being ‘double-jointed’ (although that is arguably an inaccurate phrase), and I bet we can all remember testing our friends flexibility on the playground in primary school and self-diagnosing ourselves with this strange thing called being ‘double-jointed’. Don’t worry though if you were told you were ‘double-jointed’, as being hypermobile isn’t always a medical condition as it doesn’t always cause problems. In fact, a lot of people who are hypermobile can use it as an advantage in life, such as in: sports, playing musical instruments and dance. So, unless you have been diagnosed by a doctor with these flexibility tests:
you probably do not have it. Although, I would like to add that there are other symptoms which come along with hypermobility (such as: clicking joints, pain and stiffness in joints, joints that dislocate, fatigue, recurrent injuries, digestive problems, dizziness and stretchy skin), so if you are still concerned please see your GP.
My dislocations got especially bad in my last year of GCSE’s, brilliant timing I know, until they began to settle. Maybe it was because I was free of the stress of school (yes, hypermobility can get worse with stress) but I eventually was not getting dislocations everyday and it was happening roughly twice a week. Perhaps not ideal for most but this was such a wonderful improvement for me. Things were looking up and I made it to sixth form with a relatively positive outlook.
Now, what I have not mentioned is that I had slowly begun to get pain in my hip. Walking long distances aggravated it and when I asked my GP and physio, they just told me that pain in other joints was quite common with girls who had shoulder problems and that it was probably fine, just monitor it. Do you see where this is going yet?
In September 2016 there was a fire drill at school and as my friend, Amy, and I were walking up the stairs back to our class room, I was struck with some of the most intense pain I have ever been in. My right hip and lower back felt as if it had been struck by lightning and my muscles were burning. I was stuck on a landing between two sets of stairs (another example of my body’s impeccable timing) and I was staring at Amy in horror. She of course ran up the rest of the stairs (show off) to find my teacher and I was left to panic about what was going on. What if this was going to be like my shoulders?
One ambulance ride and some embarrassing photos taken of me on gas and air by Amy later, and I was in the hospital. I had an x-ray and luckily they found nothing and the relief was overwhelming. It didn’t negate the fact though that I still had no idea what was going; my leg was at a funny angle and I couldn’t for the life of me relax any of my muscles, my leg had even began shaking which had certainly not helped the pain.
Basically it looked like the muscles surrounding my hip had gone into spasm and the doctor at A&E told me that it should eventually relax. So off I went at a very slow pace, crutches in hand.
Now, I’ll fast forward through the next nine months, as I know this is already getting quite long:
- I got an appointment with a rheumatologist, a doctor that specialises in joint, muscle and bone diseases.
- I was put on some pretty heavy duty painkillers.
- I dropped out of sixth form, I missed too much due to pain and it was unrealistic.
- It felt like I went through a million tests, including an MRI and a multitude of blood tests, without knowing much about anything at all.
- It was months before I got any clear answer on what my body was doing, and even then, the answers were vague.
- They ruled out everything that could be really sinister. It was something I was truly grateful for, but my frustration about not understanding my condition did not go away.
- Months passed and I constantly questioned my sanity. Was it all in my head?
- I returned to sixth form, although my attendance is a bit of a joke at this point.
- All the tests had been done and it felt like Fibromyalgia was just thrown onto me.
Fibromyalgia was something that I had never heard of, and I’m betting quite a few people out there haven’t either. Fibromyalgia is basically a long-term condition that causes chronic widespread pain and a heightened pain response to pressure.
Personally I’m still learning about Fibromyalgia so I do not want any of my misunderstandings leading to anyone else being misinformed. So, if you are like me and have been recently diagnosed with Fibromyalgia or just genuinely want to know more about the condition, can I recommend Google?
I know, I know, it’s silly, but honestly doing my own research and finding blogs that are written by people who are experiencing similar things have helped me leaps and bounds. I particularly like My Foggy Brain and The Fibro Frog.
So here I am: eighteen, walking with a stick and, in terms of pain, no end in sight. I am trying to educate myself and hopefully you’ll learn something too. More people need to be aware about chronic pain and Fibromyalgia as they are very common conditions and there desperately needs to be more research into them.
This is going to be an interesting ride.
p.s. Remember, everyone’s journey with Fibromyalgia, chronic pain and hypermobility is different and I by no means represent everyone who suffers with the conditions.
- NHS – Joint Hypermobility
- Hypermobility Syndrome Association
- NHS – Fibromyalgia
- Arthritis Research UK – Fibromyalgia
- Fibromyalgia Action UK
- NHS – Chronic Pain Management
- Web MD – Chronic Pain