CONDITIONS

Hypermobility & Ehlers-Danlos syndrome

Hypermobility & Ehlers-Danlos syndrome

Hypermobility & Ehlers-Danlos syndrome

Understanding hypermobility, persistent pain and living well

Understanding hypermobility, persistent pain and living well

Many people with hypermobility have been told throughout their lives that they are double-jointed or unusually flexible. For some, this flexibility never causes problems. For others, it can lead to pain, fatigue, repeated injuries and a range of symptoms that affect everyday life. At Wye Sanctuary, we understand that hypermobility is far more than simply having flexible joints. It is a condition that can affect the entire body and, for many people, the nervous system as well. Our aim is to help you understand why you’re experiencing pain and develop a personalised plan to help you move, function and live more comfortably.

What is hypermobility?

What is hypermobility?

Hypermobility means that joints move beyond the normal range expected for most people. Many children and young adults are naturally flexible, and for most this causes no problems. However, some people develop symptoms because the connective tissues that support their joints, ligaments and other structures are more elastic than usual. This may be called Generalised Joint Hypermobility, Hypermobility Spectrum Disorder or hypermobile Ehlers-Danlos Syndrome. These conditions exist on a spectrum, and many people have symptoms without fitting neatly into one diagnostic category.

What is Ehlers-Danlos Syndrome?

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndromes are a group of inherited connective tissue disorders. The most common form is hypermobile Ehlers-Danlos Syndrome. Unlike some of the rarer forms of EDS, there is currently no genetic test that confirms hEDS. Diagnosis is based on recognised clinical criteria after excluding other causes. Many people with hEDS have lived with symptoms for years before receiving a diagnosis.

Common symptoms

Common symptoms

Pain

Widespread muscle and joint pain, joint instability, recurrent sprains, neck and back pain, shoulder pain, pelvic pain and headaches.

Joint problems

Frequent injuries, partial joint dislocations, dislocations, clicking or unstable joints, and feeling that joints give way.

Fatigue

Fatigue may result from the increased effort required to stabilise joints, poor sleep, chronic pain, autonomic dysfunction and nervous system sensitisation.

More than just joints

More than just joints

Hypermobility can affect many other parts of the body. Some people also experience dizziness on standing, digestive symptoms, irritable bowel syndrome, bladder symptoms, easy bruising, poor wound healing, anxiety, migraine, pelvic floor problems or jaw pain. Not everyone experiences all of these symptoms, but recognising them helps us understand the condition as a whole.

Why does pain become persistent?

Why does pain become persistent?

Pain in hypermobility usually starts because joints and surrounding tissues are working harder to remain stable. Repeated small injuries and increased muscle effort can make the nervous system increasingly sensitive over time. Eventually, pain may continue even when there is no new injury. This is known as central sensitisation or nociplastic pain. It does not mean the pain is imaginary or that damage is continuing to occur. It reflects changes in how the nervous system processes pain signals.

How is hypermobility diagnosed?

How is hypermobility diagnosed?

Diagnosis begins with a detailed clinical assessment by a rheumatologist or other specialist clinician. Your clinician may assess joint flexibility, previous injuries, family history, skin features, joint stability and other symptoms affecting different body systems. Sometimes the Beighton Score is used as part of the assessment, although this is only one aspect of diagnosing hypermobility. If another inherited connective tissue disorder is suspected, referral to a specialist genetics service may occasionally be recommended.

Treatment

Treatment

There is currently no cure for hypermobility, but there are many treatments that can significantly improve symptoms and quality of life. The best results usually come from combining several approaches.

Education

Understanding why pain occurs often reduces fear and helps people make confident decisions about activity and exercise.

Physiotherapy

Specialist physiotherapy is often the cornerstone of treatment, focusing on strength, endurance, balance, coordination, joint control and gradual progression rather than aggressive stretching.

Exercise and lifestyle

Regular movement, sleep support, stress management, nutrition, pacing and fatigue management can make a significant difference to pain and function.

Medication

Medication may sometimes help, particularly if nerve pain or widespread pain is present, but it is usually most effective when combined with rehabilitation and education.

Injection treatments

Some people develop specific painful joints or tendon problems that respond to targeted injections, considered individually as part of a broader rehabilitation plan.

Our approach at Wye Sanctuary

Our approach at Wye Sanctuary

Living with hypermobility often means living with uncertainty. Many patients tell us they have seen multiple specialists over many years before someone finally joined the dots. Our role is to look at the whole picture: joint health, nervous system sensitisation, fatigue, sleep, physical conditioning, emotional wellbeing, daily function and your personal goals. Together, these factors help us develop a realistic and sustainable treatment plan that supports long-term wellbeing.

Frequently asked questions

Is hypermobility always painful?

Can hypermobility cause arthritis?

Should I avoid exercise?

Is hypermobility linked with fibromyalgia?

A note from Dr Charlotte Small

A note from Dr Charlotte Small

“People with hypermobility often tell me they feel as though no one has ever looked at the whole picture. Rather than seeing isolated joint problems, I see a condition that can affect movement, fatigue, the nervous system and overall quality of life. My aim is to help you understand your symptoms, build confidence in your body again and develop a treatment plan that supports long-term health, not just short-term pain relief.”