Hypermobility Spectrum Disorders (HSD)

Hypermobility vs hypermobility spectrum disorder

Joint hypermobility simply means joints that bend further than usual, often called being "double-jointed". It affects many children and young adults, more women than men, and more people of Asian and African descent. Most hypermobile people have no problems, and flexibility can be an advantage in dance, gymnastics and music.

Hypermobility spectrum disorder is diagnosed when hypermobility causes ongoing symptoms, such as pain or instability. It replaced the older terms "joint hypermobility syndrome" and "benign joint hypermobility syndrome" in 2017.

Types of HSD

• Generalized HSD: many joints are hypermobile.
• Peripheral HSD: mainly hands and feet.
• Localized HSD: one joint or a group of joints, such as the shoulders.
• Historical HSD: joints were hypermobile in the past but are less so now, with lasting symptoms.

The Beighton score

Doctors use a 9-point score to measure generalized hypermobility:

A score of 5 or more in adults (6 or more in children before puberty, 4 or more over age 50) indicates generalized hypermobility. The score does not capture every joint, such as shoulders or hips.

Symptoms

• joint pain, often in the knees, ankles, hips, shoulders and back, worse after activity
• frequent sprains and soft tissue injuries
• subluxations and dislocations, especially of the shoulder, kneecap and fingers
• clicking or popping joints
• fatigue and poor stamina
• poor coordination and balance, due to reduced joint position sense (proprioception)
• flat feet
• easy bruising and soft skin
• delayed motor milestones or clumsiness in children

Associated conditions

People with HSD more often have:

• POTS and other forms of dysautonomia (dizziness, fainting, racing heart on standing)
• functional gut problems such as reflux, bloating and constipation
• bladder and pelvic floor problems
• anxiety
• chronic widespread pain and fibromyalgia-like symptoms
• headaches

HSD vs hypermobile Ehlers-Danlos syndrome

Hypermobile Ehlers-Danlos syndrome (hEDS) is diagnosed with stricter criteria that include generalized hypermobility plus specific skin and tissue features, family history or musculoskeletal complications, and excluding other conditions. HSD is diagnosed when someone has symptomatic hypermobility but does not meet all hEDS criteria. Symptoms and treatment overlap heavily, and HSD is not necessarily milder.

Other conditions to rule out include Marfan syndrome, vascular and classical EDS, Loeys-Dietz syndrome and osteogenesis imperfecta, which carry specific risks such as aortic problems. Clues include very tall stature with long limbs, lens dislocation, very fragile or translucent skin, organ rupture or a family history of sudden death.

Diagnosis

A doctor, often a rheumatologist, geneticist or sports medicine physician, will:

• take a detailed history of joint problems, injuries, pain, fatigue and other symptoms
• calculate the Beighton score and check other joints
• examine the skin, scars, palate, spine, feet and heart
• ask about family history
• order tests as needed, such as an echocardiogram if Marfan syndrome or aortic problems are suspected, or genetic testing for other EDS types

There is no blood or genetic test for HSD or hEDS.

Treatment

Physical therapy

The cornerstone of treatment. A physical therapist experienced in hypermobility will focus on:

• slow, controlled strengthening of muscles around unstable joints
• core and hip stability
• proprioception and balance training
• posture and movement habits, such as avoiding locking the knees or elbows
• gradual, paced increases in activity

Low-impact activities such as swimming, cycling, Pilates and strength training are usually well tolerated. Progress is often slow, over months.

Pain management

• acetaminophen (paracetamol) or NSAIDs at the label dose for flares
• heat, gentle exercise and pacing activities
• medicines for nerve-type pain in some people
• cognitive behavioral therapy and pain management programs for chronic pain
• avoid long-term opioids where possible

Other support

• supportive footwear and orthotics for flat feet
• braces or taping for specific unstable joints, short term
• occupational therapy for hand pain, writing and daily tasks
• treatment of POTS, gut and bladder symptoms
• school or workplace adjustments

Outlook

HSD is long-term but not life-threatening. Many people find that stiffness increases with age, reducing hypermobility, though pain can persist. With consistent strengthening and good self-management, most people can stay active and reduce injuries.

Frequently asked questions

What is the difference between HSD and hEDS?

Both involve symptomatic joint hypermobility. hEDS requires meeting strict criteria, including specific skin and tissue features or family history. HSD is diagnosed when symptoms are present but those criteria are not fully met. Treatment and day-to-day impact are often similar.

Is being double-jointed a problem?

Usually not. Many flexible people never have problems. It only becomes a hypermobility spectrum disorder when the flexibility causes ongoing pain, frequent sprains, dislocations or other symptoms.

What helps hypermobility pain?

Targeted strengthening and stability exercises with a physical therapist help most. Pacing activity, good posture, supportive footwear, heat, simple pain relievers and treating related problems like POTS also help. Recovery is gradual, so consistency matters.

Can hypermobility cause fatigue and dizziness?

Yes. Many people with HSD or hEDS have fatigue, and some have POTS or other dysautonomia, causing dizziness, a racing heart and fainting when standing. These can be treated with fluids, salt, compression and exercise, and sometimes medicine.