Hypermobility Spectrum Disorder

Hypermobility Spectrum Disorders or HSDs are new names for well-known symptoms. For years people have been labelled ‘double-jointed’ when they are actually hypermobile. This new diagnosis replaces the outdated terms of ‘Benign joint hypermobility’ and ‘joint hypermobility syndrome’.

Hypermobile referring to the extra-flexible and often unstable joints and spectrum representing the wide range of symptoms as well as the vast differences from person to person. Not everyone who is hypermobile will have a spectrum disorder.

The term HSD is often used to describe people with recognised symptoms because of hypermobile tissues who do not meet the diagnostic criteria for syndromes like Ehlers Danlos or carry the genetic markers for conditions like Marfan Syndrome. The symptoms of HSDs can be very similar to Hypermobility Syndromes or Heritable Disorders of Connective Tissue.

Types of HSDs

There are four different HSD’s.

Generalised Hypermobility Spectrum Disorder or G-HSD. This is where the person has hypermobility in most of or all of their joints. Generalised joint hypermobility is tested using the Beighton score.

Localised Hypermobility Spectrum Disorder or L-HSD. In this case the person has hypermobility in one joint or a group of joints like their left elbow, shoulder and wrist. etc.

Peripheral Hypermobility Spectrum Disorder or P-HSD. This is where someone has hypermobility in just their hands and feet. Possibly wrists and ankles too.

Historical Hypermobility Spectrum Disorder or H-HSD. This refers to someone who used to be hypermobile but isn’t anymore. People with a history of hypermobility can experience pain, injuries and fatigue long after their joints have stiffened up.

Symptoms

People who live with HSDs often show a range of symptoms not limited to bendy joints. Not everyone will have the same symptoms and it is possible for symptoms to change over time.

Pain. This can be either acute, chronic or a mix of both. Many people with HSD will experience frequent acute injuries such as sprains, strains, subluxations and dislocations. These injuries can cause short-term pain but many people with HSDs also have chronic pain. Learning a range of Pain Management techniques is essential and is especially good for those who don’t tolerate pain medications or those too young to take them. Back pain can cause particularly severe problems so Medical Corsetry can be an option.

Frequent Injuries. As mentioned above, the joint laxity and tissue weakness associated with HSDs often means frequent injuries. Even the most simple tasks come with associated risks. Following the principles of Joint Protection can help to avoid injuries and protect especially wonky joints. I also run a Joint Protection Masterclass via video chat.  Splinting can also be a useful tool to help manage especially wonky joints or when recovering from an injury.

Mobility aids can be a great way to manage recurrent symptoms or recover from acute ones. Knowing when to use mobility aids can be difficult but a bit of logical thinking and risk assessment can help clear things up.

Some people with HSDs also struggle with Autonomic issues such as low blood pressure, postural tachycardia and syncope. Unfortunately there is no quick fix for autonomic issues but increasing fluid and salt intake can really help. Compression clothing and regular horizontal rest breaks can help too. For those who struggle to control their body temperature check out my top tips for Temperature Regulation.

Fatigue can be a big problem for people with HSDs. The best way to manage fatigue is Pacing. Frequent breaks, planning your activities carefully and modifying challenging activities can really help maximise your energy levels. It’s not always as simple as it sounds so I run regular Pacing Masterclasses via video chat.

Another symptom of HSDs is bruising, lots of bruises (many of which you don’t remember getting). Some people also have fragile skin that heals slowly or scars abnormally from little wounds.

Painsomnia (pain induced inability to sleep) is a common occurence for many painful conditions and HSDs are no exception. Sleep Hygiene practices can help you create and stick to a sleep routine to get the rest you need. If you’re struggling to create or stick to a sleep routine you may benefit from my Sleep Hygiene e-clinic.

Having read all of this you’re probably getting good at self-managing your condition, this is great but it’s important to know when to seek medical help. People with long-term conditions have a terrible habit of trying to self-manage things that are really medical emergencies. Nobody will blame you for seeking medical help when you need it. To make sure this goes smoothly I’ve also compiled some tips about creating relationships with healthcare providers.

Hopefully this will provide some much-needed support and advice, please check back regularly I’m aiming to add to this list as I write new articles.

As always questions and comments are welcome!

JBOT

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2 thoughts on “Hypermobility Spectrum Disorder

  1. Very interesting and informative, I have Chronic Pain, as well as Chronic Fatigue Syndrome and spinal issues, but having HSD was never picked up and reading about it I quickly recognise many symptoms of HSD.It is interesting to note that you can have HSD which I did to an exstream level when I was young but although I’m still flexible and suffer dislocations on a regular basis I have stiffened up to quite a degree, one of the things that remains is how soft my skin is as many people have commented on. I also recognise the pain that stops you sleeping, along with most of the symptoms and problems you mention, I found this an excellent piece on HSD and will definitely keep myself informed.

    1. Thank you very much Andrew, I’m always pleased to hear my posts are informative. It’s an interesting set of conditions which can be so varied so it’s sometimes difficult to represent all the variations in one article.

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