Joint hypermobility, clinically known as Hypermobility Spectrum Disorder (HSD) or Joint Hypermobility Syndrome (JHS), is experienced by between 1 in 5 and 1 in 30 people across the whole of neurodiversity (everyone in the world). Neurodivergent people are reported to be over seven times more likely to experience joint hypermobility and associated pain than the wider population.

To add yet another layer of complication, please also see the glossary entry for Ehlers-Danlos Syndromes (EDS). EDS and JHS are  connected as JHS is a type of EDS. Joint hypermobility is otherwise known as hEDS (hypermobile Ehlers-Danlos Syndrome).

So what is it? At the very least, some joints will be hypermobile – they flex beyond normal limits – what we used to describe as being ‘double jointed’. This hyper-flexibility is most often caused by differences in our collagen (which tends to be genetically inherited) which means that the ligaments surrounding our joints aren’t strong enough to support the joints properly. Unfortunately, this means that we are more susceptible to injury, so we need to be careful not to push our joints to their limits.

Here are some other features that a hypermobile person commonly experiences, though it is possible to have no other symptom beyond hypermobile joints:

  • Pain and aches in the affected joints
  • Stiffness in those joints, despite that being the opposite of what hypermobile brings to mind
  • A lack of co-ordination and/or ability to keep our balance
  • Problems associated with the bladder and bowel – lack of bladder and bowel control, diarrhoea or constipation
  • Sprains and injuries that are frequent and easily done
  • Joints that ‘pop’ (dislocate)
  • Internal organ involvement
  • Skin that heals poorly, that is stretchy and fine
  • Exhaustion, for no obvious reason
  • Sight problems that vary from short-sightedness to droopy eyelids
  • Joints that make an audible clicking sound when moved in particular positions
  • Fainting and becoming dizzy easily, particularly when moving to stand

If you recognise yourself here and want to investigate further, you could start by calculating your Beighton score – it’s quick and it should give you a very good indication of whether you need to contact the GP for further support. Click here for the Beighton test.

There are, however, factors that will reduce your Beighton score and give an artificial result. For instance, if you are over 50, the stiffness associated with age is likely to reduce a score that would have been much higher when you were younger. That doesn’t prevent you from having the associated symptoms such as pain and injuries. So the Beighton score isn’t cast iron, by any means. So, this brings us to the Brighton criteria, which is often referred to in adults, as we inevitably lose some of the more obvious symptoms as we age, and gain others – spondylosis of the spine is one example, bursitis is another, as is uterine or rectal prolapse.

Here is a link to an NHS page on JHS. If you scroll down you’ll see the Brighton criteria and from here you will know whether to contact your GP. [Side note: I will be!].

I’ve also added a link here to the UK’s Hypermobility Syndromes Association.