Thursday, 18 August 2016

Living with Joint Hypermobility

The amount of times I have had people say to me there is nothing wrong, there is no such thing as Joint Hypermobility Syndrome. Now I'm not saying this is something that everybody says but it is something I regularly hear. Now there is already a post about disabilities  I have written which includes facts and statistics regarding disabilities and how 52% of people in England believe disabilities are physical.

Like I've said before just because you can't see a disability, doesn't mean it's not there.

Towards the end of 2012 I started getting pain in my hands, which I regularly went to the doctors for until they finally sent me to a Rheumatologist at my local hospital. I was studying my A-Level's it became very painful, studying Art and Sociology was especially difficult as I struggled holding a pencil or pen for more than 10 minute due to the pain. My thumb is the tricky one. When I write unfortunately it doesn't really know what it's doing and bends too much! So in February 2013 I had my first appointment for the pain in my hand joints like my fingers and wrists.

So I learnt in my first appointment that Joint Hypermobility is based on the Beighton score as you can see by the image below.
Taken from the Hypermobility website

It is a point for each of these that you can do left and right, meaning the Beighton score is out of 9. I am 9 out of 9 on this scale which means I am hyper-mobile in every joint. I still always say I am lucky so far that my joints haven't begun to dislocate yet, but unfortunately will in the future. I don't see any point worrying about something that hasn't happened yet.

Some symptoms for Joint Hypermobility includes pain and stiffness in muscles, clicking joints, back and neck pain, fatigue (tiredness), lack of coordination and reoccurring injuries like dislocations or sprains.

Over the last four years I have had many other appointments with different hospital departments that have gone from a 6 month basis to now yearly. During the first year of my first appointment I also had sessions with a occupational therapist. They created hyper-extension blocks which are for my fingers when typing and writing. I especially found the thumb block helpful which stopped my thumb extending when I was writing. I was advised to think about and purchase basic lycra garments to support my joints, which I have done and can wear underneath normal clothes.

During the first year also I had to have physiotherapy sessions, as my shoulder is the joint that causes me the most pain on a daily basis. I have also had a ultrasound scan on my shoulders and also a MRI scan but thankfully everything for now is intact and normal. So all the pain I am experiencing is because of my Joint Hypermobility. Now in 2016, I recently had my yearly Rheumatologist appointment and will be having physio again on the same shoulder.

So this is it really, I would say I am one of the lucky ones as I haven't dislocated yet and all my pain at the moment is because of 'disability'. But I wouldn't say there are many times it has held me back, but here are a few,

  • Jobs - When I was taking my A-Level's I wanted to go to university and become a paramedic. Unfortunately after me and my teacher did some research on the job having Hypermobility meant I couldn't have this career. 
  • Work - I work at a stadium where I have to sometimes push people in wheelchairs to their seats and this is something I have realised I don't feel comfortable doing. With my lack of coordination and the pain in my right shoulder I had to tell my area supervisor I don't feel comfortable doing this.
  • Food - Something as simple as peeling a potato really hurts my thumb.. Really random. Does this happen to anyone else? 
  • University - University is something I thought I would really struggle with, especially with the new workload. Thankfully DSA (Disability Students Allowance) has really supported me so far at university providing me with brilliant equipment such a printer, scanner and laptop to support me during my studies. 

If you have any questions about Joint Hypermobility please feel free to comment and I'll answer the best I can. Also as always you can contact me on or on twitter @girlwithablog16.

Thank you so much for reading!

Sam x