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.
Hypermobility spectrum disorder (HSD)
Hypermobility spectrum disorders (HSD) are an increasingly recognised group of conditions. HSD can affect joints, tendons and ligaments. People with HSD can have symptoms and conditions that affect other areas. Other names for HSD include hypermobile Ehler’s Danlos Syndrome (hEDS). HSD is the term we are using for this page.
Causes of hypermobility spectrum disorders
HSD can cluster in families, but it is not recognised to be an inherited genetic condition like Ehlers-Danlos syndromes (EDS).
Latest research shows:
- HSD is mainly to do with the stress messengers (cytokines) in your body
- there is no genetic problem with how your body makes collagen (collagen formation) in HSD.
In genetic EDS there are inherited, genetic problems with collagen formation.
It is not clear how common HSD is. 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 tends to be diagnosed when people develop associated conditions such as:
- joint dislocation
- irritable bowel syndrome (IBS)
- chronic pain
- chronic fatigue.
HSD can happen in any sex or gender and appears to be more common in women.
Symptoms of hypermobility spectrum disorders
People with 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).
Sometimes HSD symptoms can be constant. Sometimes they can get worse but often get better over time.
Diagnosing hypermobility spectrum disorders
It can take time for HSD to be diagnosed as symptoms can mimic many other conditions. HSD with symptoms is usually due to one or many associated conditions such as:
- irritable bowel syndrome (IBS)
- disorder of gut brain interaction (DGBI)
- fibromyalgia
- chronic fatigue.
You will not come to any harm if you have HSD with no symptoms and do not receive this diagnosis. The main cause of harm in undiagnosed HSD is from being misdiagnosed with something else, and then having:
- complications of diagnostic tests that were not needed
- complications of treatments that were not needed.
If you are concerned about your symptoms talk to your healthcare provider. They will:
- ask you about your current symptoms
- ask you about your history of past injuries and illness
- check the elasticity of your skin
- check how mobile your joints are.
They may use the Beighton Scoring System or a HSD/hEDS diagnostic checklist.
The Beighton Scoring System — The Ehlers-Danlos Societyexternal link
There is no gene test or other blood test for HSD. Sometimes a specialist doctor will consider genetic testing to check for EDS or Marfan's. Gene testing for these conditions is not currently publicly funded for people with HSD. Your healthcare provider may be able to arrange these tests through a private system that you will need to pay for.
They may refer you for ultrasound or x-ray to look at your 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 your 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
- treating conditions that can happen with HSD
- 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.
Support groups — Ehlers-Danlos Syndromes Aotearoa New Zealandexternal link
Treating hypermobility spectrum disorders
Treatment from primary care professionals can help with your symptoms and improve your quality of life. You may find you will benefit from seeing different health professionals over time. For people with more significant symptoms from HSD, care that includes an integrated multi-disciplinary team is the best option. But in the public healthcare system these are not yet available for HSD. Your health care provider may consider referring you individually to the same healthcare professionals that should make up this team including:
- physiotherapist
- specialist doctor
- psychologist
- dietitian.
Sometimes there is a waiting list and some therapies are not available in the public healthcare system.
Some people with HSD experience mental health issues such as depression and anxiety or 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 you:
- learn to live with the challenges of a long-term condition
- deal with symptoms such as tiredness and fatigue.
Your healthcare provider, psychiatrist or psychologist may recommend prescribed medication.
If you experience weight loss or there are concerns about your nutrition levels, your healthcare provider may refer you to a dietitian.
Healthcare providers such as GPs can prescribe pain relief for injuries or refer to a physiotherapist or pain specialist.
A physiotherapist can help you strengthen your muscles and joints. You must tell them you have HSD. They may suggest different exercises and approaches to promote safe and effective movement and function.
Sometimes a specialist doctor can work with your primary healthcare provider to provide you with additional specialised advice, tests, and care when needed.
Rarely you may require surgery, for example to stabilise a joint that frequently dislocates.
Conditions that can happen with hypermobility spectrum disorders
Often people with HSD describe symptoms that are outside of the joints. Research is underway to better understand if these are separate conditions or part of the HSD range of conditions:
- chronic fatigue
- chronic pain
- fibromyalgia
- pelvic floor weakness
- skin changes
- mental health, such as depression and anxiety, or trauma
- postural orthostatic tachycardia syndrome (POTS)
- chronic nausea, and similar disorders of gut-brain interaction (DGBI)
- constipation.
These conditions can generally be diagnosed and managed without specialists.
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 your healthcare provider. People can have POTS and not have HSD.
It is managed with treatments such as:
- oral hydration
- oral electrolytes
- an exercise programme to improve tolerance to standing
- medications to support blood pressure
- special compression stockings to help the circulation.
Symptoms of irritable bowel syndrome (IBS) are common in HSD, as is chronic constipation. Reduced movement (motility) of the gastrointestinal tract can sometimes contribute in some people.
These conditions fall into a group of conditions called DGBI (disorders of gut brain interaction). The reasons why people with HSD develop DGBI are complex, including psychological reasons and nervous system reasons. There is ongoing research about this.
It is recommended that people with HSD with significant symptoms focus on effortful eating, focusing on what they can tolerate, including input from a dietitian if possible. This recommendation is backed up by research and international consensus guidelines. Treatments for DGBI that work for non-HSD people can often help HSD people too, such as:
- dietitian advice
- laxatives
- certain medications
- specialist advice
- mental health support.