Hypermobility and Ehlers-Danlos syndromes

What hypermobility and EDS are

Hypermobility means your joints move further than most people's. It is sometimes called being "double-jointed". On its own it is common and often harmless. Many dancers and athletes are hypermobile.

Problems happen when the tissue that holds your body together, called connective tissue, is weaker or stretchier than usual. This is mainly due to differences in collagen, a protein that gives strength to ligaments, skin, blood vessels and organs. Loose ligaments mean joints are less stable, and muscles have to work harder to protect them.

The Ehlers-Danlos syndromes (EDS) are a group of inherited conditions that affect connective tissue. Hypermobile EDS is the most common. Most of the other types are rare. When someone has symptoms from hypermobility but doesn't meet the criteria for hEDS, doctors call it hypermobility spectrum disorder (HSD).

Hypermobility often runs in families. If a parent has hEDS, each child has a 1 in 2 chance of inheriting it. It is more common in women, in children, and in people of African, Caribbean and Asian family backgrounds. Joint flexibility often lessens with age, but pain and other symptoms can continue.

Types

Hypermobility is best thought of as a spectrum. At one end are people with flexible joints and no symptoms. At the other is hEDS. HSD sits in between, but it can be just as disabling.

Hypermobility can also be part of other conditions, such as Marfan syndrome, or be caused by injury or years of stretching training. A doctor can help work out which applies to you.

Symptoms and how they change

Symptoms vary widely, even within the same family. They often affect more than just the joints. Common symptoms include:

• Joint and muscle pain
• Stiffness
• Clicking joints
• Frequent sprains and strains
• Partial or full dislocations
• Ongoing tiredness
• Poor balance and coordination
• Soft, stretchy skin
• Easy bruising
• Stomach and bowel problems
• Bladder problems
• Dizziness when standing

Many people also have related conditions, such as postural tachycardia syndrome (PoTS), which causes a fast heartbeat and dizziness on standing, as well as anxiety. These can affect daily life more than the joint problems.

There is no fixed course, but many people describe a pattern like this:

1. Childhood and teens

   Often the first signs

   Very flexible, sometimes clumsy. "Growing pains", frequent sprains, or tiredness after activity. Some children struggle with handwriting or sport.

2. Young adulthood

   Symptoms often build up

   Pain spreads to more joints and becomes more constant. Fatigue, gut problems or dizziness may appear. Changes in hormones, pregnancy, injury or a spell of inactivity can make things worse.

3. Later adulthood

   Joints often stiffen

   Flexibility usually reduces with age, but long-term pain and fatigue may carry on. With the right exercise and support, many people find their symptoms become more manageable.

Symptoms often go up and down. You might have good weeks and bad weeks, and a flare can follow overdoing things, an injury, an illness or stress.

When to get urgent help

Diagnosis and referral

Start with your GP. They will ask about your symptoms and family history and examine you. They will usually check your flexibility using the Beighton score, a simple 9-point test of your fingers, thumbs, elbows, knees and spine. Blood tests or X-rays may be used to rule out other conditions, such as arthritis.

hEDS is diagnosed using checklist criteria set in 2017. These look at how flexible your joints are, signs in your skin and body, family history, and joint problems. There is no blood or genetic test for hEDS or HSD. Some GPs feel able to diagnose them. Others will refer you, often to a rheumatologist.

If a rarer type of EDS is suspected, such as vascular EDS, you will be referred to NHS genetics services for a blood test. There are specialist NHS EDS diagnostic services in Sheffield and London, but these are mainly for complex cases and rarer types.

A diagnosis matters. It helps you get the right advice and avoid activities that might damage your joints. But you don't need a formal label to get physiotherapy or reasonable adjustments at work.

Treatments and medicines

There is no cure for hypermobility or EDS, and no medicine treats the condition itself. Treatment focuses on protecting your joints, reducing pain and helping you stay active. HSD and hEDS are treated in the same way.

Specialist help and surgery

Most people are cared for by their GP and physiotherapist. Some need more support.

1. Pain management programmes

   Usually a course of weekly group sessions

   Run by NHS pain clinics. A team of physiotherapists, psychologists and others helps you understand pain, pace activity and cope better day to day. Talking therapies such as CBT can help you cope with long-term pain.

2. Specialist rehabilitation

   Varies by area

   Some NHS rheumatology and rehabilitation services have extra experience with hypermobility. What is on offer varies a lot by area. Ask your GP or rheumatologist what is available locally.

3. Surgery

   Only after careful thought

   Surgery to stabilise a joint is sometimes considered, for example for repeated shoulder dislocations. Fragile tissue can make results less predictable and wounds slower to heal. Tell every surgeon, dentist and anaesthetist about your diagnosis. Physiotherapy is usually tried first. After a dislocated shoulder, recovery usually takes 6 to 12 weeks.

Self-help and living well

Pacing means doing a steady amount each day, rather than doing a lot on good days and crashing afterwards. It can help you avoid the "boom and bust" cycle that often makes pain and tiredness worse.

Tips for getting the best treatment

• Ask your GP to check your Beighton score
• Mention all your symptoms, not just joint pain
• Ask to see a physiotherapist with experience of hypermobility
• Take factsheets from EDS UK or the HMSA to your appointment
• Ask about referral to rheumatology if the diagnosis is unclear
• Ask about tests for PoTS if you feel faint when standing
• Ask for an occupational therapy assessment for work or home
• You can ask for a second opinion if you feel you aren't being heard

Hypermobility and work

HSD and hEDS can count as a disability under the Equality Act 2010 (the Disability Discrimination Act in Northern Ireland). This applies if your condition has more than a minor effect on your daily life and has lasted, or is likely to last, at least 12 months. Conditions that come and go can count. The law looks at how you would be without treatment.

If it does, and your employer knows or should know about it, they must make reasonable adjustments. Adjustments might include:

• An ergonomic chair with good back support
• A sit-stand desk so you can change position
• A split or light-touch keyboard and a vertical mouse
• Voice recognition software to reduce typing
• Regular breaks to change position and pace yourself
• Less lifting, carrying or repetitive work
• Flexible hours or working from home
• A phased return after time off or surgery
• Time off for physiotherapy and appointments
• A parking space close to the entrance

Access to Work is a government grant that can pay for equipment, support and travel to work. EDS UK has a toolkit for employers. For advice on your rights, contact Acas or Citizens Advice.

Benefits

If you are too unwell to work, you may get Statutory Sick Pay from your employer. Depending on how your condition affects you, you may also be able to get Personal Independence Payment (PIP), or Adult Disability Payment in Scotland, Universal Credit or Employment and Support Allowance. Describe your worst days and how often they happen, not just your good days. Turn2us and Citizens Advice can help you check what you can get.

Support and sources

Last reviewed: October 2026.