Hypermobility spectrum disorder (HSD)

People with hypermobility spectrum disorder (HSD) have very stretchy skin, joints, tendons or ligaments. Sometimes this is painless, other times joints dislocate causing pain. Other areas of the body can have symptoms too.

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There is much debate about whether hypermobility spectrum disorder, joint hypermobility syndrome and hypermobile Ehlers-Danlos syndrome are the same or separate conditions. They have many of the same symptoms and science is increasingly suggesting they are the same condition. 

For this page, we will use the term hypermobility spectrum disorder (HSD) to describe all these syndromes of stretchy skin and joints. People with HSD can have symptoms and conditions that affect other areas of the body too, which this page also covers.  

Links to conditions commonly associated with hypermobility spectrum disorder

Overview of hypermobility spectrum disorders (HSD)

Hypermobility = stretchy or very flexible — having a very flexible body.

HSD is not recognised to be an inherited genetic condition of collagen changes like other Ehlers-Danlos syndromes (EDS). 

Ehlers-Danlos syndromes

The latest research shows:

  • there is no genetic problem with how the body makes collagen (collagen formation) in HSD
  • joint hypermobility is likely to be a result of changes to several non-collagen genes — with one recent study suggesting a genetic alteration in an enzyme (a protease). 

Research is ongoing into causes and associations. 

HSD can happen in any sex or gender, although it appears to be more common in women. 

Life expectancy is normal for people with HSD. 

It is not clear how common HSD is in the population. This is because most people who are hypermobile (stretchy or very flexible) do not have any symptoms and do not need to see a doctor. 

HSD could affect more than 1 in 500 people in the general population. 

HSD is usually diagnosed if someone with stretchy skin, joints, tendons or ligaments dislocates a joint or develops associated conditions such as:

Symptoms of hypermobility spectrum disorders

People with symptomatic HSD may notice a range of symptoms. These can be different for each person. 

Common symptoms include:

  • joint issues such as frequent sprains or dislocations
  • tiredness and fatigue
  • gastrointestinal symptoms like bloating, feeling sick (nausea) and hard poos (constipation)
  • light-headedness.

Sometimes HSD symptoms can be constant, other times they come and go. Sometimes symptoms can get worse, but symptoms often get better over time. There is no one way to experience HSD. 

Diagnosing hypermobility spectrum disorders

It can take time for HSD to be diagnosed as symptoms can be the same (mimic) symptoms of many other conditions. When HSD has symptoms, the symptoms are often due to one or more associated conditions such as:

  • irritable bowel syndrome (IBS) and other disorders of gut brain interaction (DGBI)
  • fibromyalgia
  • chronic fatigue
  • postural orthostatic tachycardia syndrome (POTS).

Symptoms of associated conditions

People with HSD with no symptoms will not come to any harm if they do not receive this diagnosis. HSD without symptoms generally means stretchy skin or flexible joints that do not affect daily life. 

We advise people who are concerned about symptoms to talk to their healthcare provider who can:

  • ask about current symptoms
  • ask about past injuries and illness
  • check skin elasticity
  • check for mobility (flexibility) of joints.

Healthcare providers may use the Beighton Scoring System or a hEDS/HSD diagnostic checklist. 

Free online Beighton Score Calculator — OthoToolKitexternal link

There is no gene test or other blood test for HSD. Sometimes a specialist doctor will consider genetic testing to check for collagen-gene types of EDS or Marfan syndrome. Gene testing for these conditions is not currently publicly funded for people with HSD. Healthcare providers may be able to arrange these tests through a private system that people need to pay for themselves. 

Sometimes, a doctor can refer a patient for ultrasound or x-ray to look at joints, particularly if there are areas of concern.

Self-care for hypermobility spectrum disorders

Self-care is very important for people living with HSD. There are several ways to manage your symptoms and improve quality of life. These include:

  • consistent, low-impact exercise to increase joint stability and fitness, and reduce pain (such as walking and swimming)
  • avoiding activities that may cause injury (such as contact sports)
  • keeping a healthy weight and lifestyle
  • maintaining food and fluids with small, regular meals and regular hydration. 

It can be helpful to meet other people with HSD. Consider contacting support groups and online communities. 

Treating hypermobility spectrum disorders

Treatment can help with symptoms and improve quality of life. Continuing self-care strategies as well makes a big difference.

People with HSD can benefit from seeing different health professionals over time. Care from an integrated multi-disciplinary team is the best option. But in the public healthcare system integrated care is not yet routinely available for HSD. A healthcare provider may consider referring a person with HSD to the same therapists that could make up this team including a:

  • physiotherapist
  • dietitian
  • doctor or primary care specialist
  • psychologist
  • specialist in secondary care, depending on symptoms.

Sometimes there is a waiting list, and some therapies and appointments with specialists are not available in the public healthcare system for HSD.

A physiotherapist can help improve muscle strength, joint stability, balance and overall function for a person with HSD. People with HSD should always tell their physiotherapist of an HSD diagnosis. Physiotherapists may suggest different exercises and approaches to promote safe and effective movement and function. Rest, heat packs, gentle massage, joint wraps or braces can offer significant relief. 

People with HSD can experience gastrointestinal symptoms. Recommendations include eating small amounts often and maintaining a balanced intake. Healthcare providers can refer a person with HSD who is experiencing nutrition concerns to a dietitian.

Healthcare providers such as GPs can prescribe pain relief for injuries, such as paracetamol or anti-inflammatories.

When the gut is causing symptoms, anti-nausea tablets or laxatives, or gut-movement stimulating medications (prokinetics) can be trialled under GP guidance.

GPs may also be able to advise on joint wraps or refer to orthotics services. GPs can usually access community-based pain management programmes. Referrals can be made to specialists where necessary.

Some people with HSD experience mental health issues such as depression and anxiety, or may have experienced trauma. It is possible there could be links with HSD and neurodiversity for some people. A psychologist or counsellor may be able to help with:

  • learning to live with the challenges of a long-term condition
  • managing symptoms such as tiredness, fatigue or pain.

Sometimes, a healthcare provider or psychologist can recommend prescribed medication to support people with anxiety and depression to have better quality of life. There is good evidence to support the responsible prescribing of these medications. 

Many people with HSD are able to meet their goals, either independently or with support from community-based therapists.

Scientific evidence indicates that people with significant symptoms benefit from integrated care, provided over time, based in their own communities, led by primary health providers. This includes mental health support, and integrated multi-disciplinary input from relevant therapists and specialists tailored to the needs of each person.

Currently this level of care is not consistently available in the public health system of Aotearoa New Zealand.

Links to conditions commonly associated with hypermobility spectrum disorders

People with HSD often describe symptoms that are not related to their joints. Research is underway to better understand if these are separate conditions or part of the HSD range of conditions. Symptoms include:

These conditions can generally be diagnosed and managed by primary care teams without specialists.

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POTS is a syndrome with symptoms of light-headedness when standing, due to blood pooling in the legs. This causes a fast heart rate (tachycardia). POTS can be diagnosed by a healthcare provider. People can have POTS and not have HSD. People can have symptoms of dizziness, and not meet the strict criteria to have POTS.

It is recommended to manage POTS with treatments such as:

  • oral hydration
  • oral electrolytes
  • an exercise programme to improve tolerance to standing
  • medications to support blood pressure
  • compression stockings to help the circulation.

Disorders of gut brain interaction (DGBI) include conditions like irritable bowel syndrome (IBS) and constipation. DGBI is a more accurate term, because research shows that these conditions are caused by miscommunication between the gut, the nervous system and the brain as the cause for persistent gastrointestinal symptoms.

Although gastrointestinal symptoms can happen during and after eating when the GI tract is active, food moving through the gut maintains gut health and movement (motility). Eating food can cause discomfort but rarely causes harm.

It is recommended that people with significant DGBI symptoms are supported by a dietitian when possible. A considered, thoughtful approach, eating small amounts often, maintaining a balanced diet and keeping hydrated can all help.

Additional supports include:

  • laxatives including fibre
  • certain medications
  • specialist advice
  • addressing brain-gut interaction with gut directed hypnotherapy or psychotherapy  
  • mental health support.  

Controversies: when there are significant symptoms

There is increasing evidence in medical literature that people with significant symptoms are at risk of being prescribed multiple medications and receiving invasive treatments that may be started with good intentions but can end up contributing to suffering and even cause harm.  

The following treatments are, in general,not recommended. These recommendations are consistent with international evidence. These treatments are also not recommended for people with severe abdominal symptoms. 

Doctors may consider these treatments if they have good clinical reasons to do so. 

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Health New Zealand acknowledges the challenges that patients, their families and whānau, and clinicians face when there are disabling symptoms, and delays to diagnosis. These conclusions and recommendations reflect the available evidence at the time of writing, and we trust that they help provide some guidance.

Health New Zealand recommends discussion of symptoms and concerns with your general practitioner. 

This page has been written and peer-reviewed by a group of Health New Zealand doctors who are experts in a range of conditions including HSD/hEDS. Note that this is intended as information for patients. Doctors should refer to more comprehensive guides which can be found in online medical texts.