Science and no more silence for Hypermobility sufferers

Getting diagnosed with hypermobility Syndrome is difficult. Chances are there will be a whole of lot of ouch, worry, sleepless nights, sleepy days, frustration and then more ouch before you get anywhere. Hopefully this will change in the future as it becomes better known to doctors and they can give answers rather than empty, blank stares and head scratches. Constant joint pain, aches, clicking, stiffness, tiredness, feeling like you can’t move because in fact, you can move too much- Hypermobility. Six syllables of BLERGH.

Before I was finally diagnosed I had been treated for so many things that I started to wonder if maybe there was nothing wrong at all and my joints were simply destined to hurt forever more. Now, after lots of research and speaking to others in the same boat, I know lots about hypermobility and where it stems from.

I am no scientist, BUT, here is a breakdown of what I have learnt:

Hypermobility is generally hereditary, although I can find no link in my family, most people will be able to. One of the key reasons a person is hypermobile is thought to be down to a protein called collagen. Collagen is most famous for making lips look pouty these days and when typed into Google, you get presented with a lovely collection of famous pouts. Amusing, but not helpful in this case. Collagen is actually found throughout the body, mostly chilling out in skin and ligaments. When collagen is weaker than it should be, the tissue in the body is fragile. This fragility means that joints can be very flexible and feel loose and extend further than what is normal for most people.

Some people can sail through life with hypermobile joints and experience no real problems or symptoms. However, when there is pain in the joints, dislocation, soft tissue injuries or joints moving out of the correct position, the problem becomes a syndrome.

There is a way of measuring how hypermobile you are using a scale called the Beighton Score. More information on this can be found on the Hypermobility Syndrome Association website: 

http://hypermobility.org/help-advice/hypermobility-syndromes/beighton-score/

Many cases of hypermobility Syndrome go undiagnosed and cause people to live everyday with terrible pain and discomfort. If you are experiencing symptoms like the ones above and feel you are getting nowhere near to a diagnosis or help, don't be afraid to tell a doctor about HMS. In my experience, the majority don't know what it is until you get to specialist level. There is nothing wrong with helping doctors to help you. More and more things are happening to promote and highlight the problem. The above website is a good place to start. It is definitely time to stop suffering in silence.