Living With Joint Hypermobility Syndrome

I'll admit that I have been putting off writing about my joint hypermobility syndrome... I had a difficult time adjusting to the old JHS, and it was a lonely, confusing and painful journey to the happy medium I have with my body, now that I've learnt to cope with it in my own way. I was 12 years old when I first learnt I had the condition. I was having physiotherapy and going through my exercises for my mysterious back problems when the student physio leapt off her chair in excitement (I wish I had those kinds of eureka moments more often!) and announced to my mother and I that I must have hypermobility syndrome. She asked me some more questions and moved my joints around a bit, and then said that I should go to my doctor and let them know because it explained the pain I had been in. So, we did just that, and the doctor looked completely clueless. He didn't know what hypermobility syndrome was, let alone what to do about it, and so he made a note on my medical records and that was that.

Five years later, and the chronic pain had progressed into my wrists occasionally dislocating, exacerbated by stress and the sheer amount of writing required for my exams at school. This finally sparked action and I was sent to a specialist at the local hospital to give me an official diagnosis. However, this experience was also disappointing. When I walked into the room, the orthopedic consultant unashamedly had the Wikipedia page on joint hypermobility syndrome up on his computer, which was not particularly comforting!

The Wikipedia article should have told him that joint hypermobility syndrome is a condition that affects your joints - they overextend, cause chronic pain and dislocate/sprain more easily. One of the ways to tell if someone has joint hypermobility, is to carry out the Beighton test (though apparently, in recent years this has been absorbed into the Brighton test). The Beighton test involves looking at the flexibility of 9 different parts of your body, to see if they bend further than the normal range. For each joint that has this abnormal flexibility, you score 1 point, with 9 points in total. If you have 1-3 out of 9 points, then you likely have minor hypermobility. I scored 8. This, combined with my constant pain and more-and-more regular dislocations, meant that I was finally officially diagnosed.

I'm glad that I finally had my diagnosis, because when I was 18, my hypermobility turned up a notch. My dislocations were more and more frequent, and some days I couldn't even get out of bed because I was in so much pain. After a year and a half, I finally made the connection with my new contraceptive implant and used the research skills and resources from my biochemistry degree to find out if there was a link. And bingo! I found a series of articles describing how the female hormones, oestrogen and progesterone, increase the hypermobility of joints and how hormonal contraceptives, such as the implant, can cause the condition to worsen. I took myself back to the doctors and insisted that I had my implant removed and it worked absolute wonders. I was back to how it was before, which was manageable and didn't leave me incapable of moving! Since then, I've been fitted with the copper T-coil as a form of contraception instead, as it's still very effective but doesn't use any hormones.

Five years on, and my joint hypermobility syndrome has become an accepted part of my life and is totally manageable. I know my body better than ever, and what it is capable of. I still live with chronic pain, but it doesn't stop me doing what I want to do. I've just adapted to making little changes to my life which allows me to minimise the pain I'm in. Some examples of this are: having to say no to a long hike; being careful in the gym; trying not to over-extend my joints during yoga; trying not to lock my knees while standing; taking breaks if I've been in one position for too long; wearing my wrist splints if I'm writing for hours and being careful about my sleeping positions. Making these little adjustments to my lifestyle means that I rarely dislocate now and I think that most people would not know that I suffer from my condition.

I feel thankful that I've made it to the point where I know my body and it's limitations, but that I can also celebrate all the fabulous things it can do. I can still walk, run, skip, write, read, think, swim, lift, move, cook, clean and dance. Pretty much anything I want, so long as I don't overwork myself. And I'm very aware that it could be a lot worse. I would say that my condition is now a mild one, thanks to the adjustments I've made. People with joint hypermobility syndrome vary so much though, that I think everyone's experience of the condition is different.

But at least the condition comes with its own party tricks! The Beighton test looks pretty amazing to onlookers, and if we're at a party together, I'm quite likely to show you my crazy bendable fingers! Plus, I'm bloody amazing at yoga! Touch the floor from standing? Easy peasy. Bring my leg up to my face? Sure. And I never need help undoing/doing up zips and buttons on the back of a dress! Surely the pain is worth it?!

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