What is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders that affect collagen, the protein that provides structure and strength to skin, joints, blood vessels, and organs. There are several subtypes of EDS, and each involves some degree of joint hypermobility, skin elasticity, and tissue fragility. The hypermobile type of EDS, often referred to as hEDS, is the most common, although it is still considered rare. Because the disorder affects connective tissue throughout the body, symptoms can extend far beyond the joints, including the heart, the digestive tract, and the nervous system.

What is Benign Hypermobility?

Benign hypermobility, also known as hypermobility spectrum disorder, refers to joints that move beyond the normal range of motion without any underlying inflammatory or systemic disease. Many people with benign hypermobility never develop complications and live active, pain-free lives. However, for some, hypermobility can lead to joint pain, frequent sprains, fatigue, and a range of other symptoms. The term “benign” is somewhat misleading, because even when hypermobility is not part of a complex syndrome, it can still affect quality of life. Clinicians now prefer to describe a spectrum, with benign hypermobility at one end and hypermobile EDS at the other, sharing many overlapping features.

How Hypermobility is Linked to Dizziness

Dizziness is a common and often overlooked symptom in people with EDS and hypermobility. The causes are multifactorial, involving both mechanical and neurological mechanisms. Understanding these connections can help people seek the right treatment and avoid unnecessary distress.

Proprioception and Joint Position Sense

Proprioception is the body’s ability to sense its position in space, and it relies heavily on receptors in the joints, ligaments, and muscles. When ligaments are lax and joints are overly mobile, these sensory signals can become delayed or inaccurate. The brain then receives conflicting information about where the body is in space, which can lead to a feeling of unsteadiness or dizziness, especially when standing or walking in uneven environments.

Autonomic Dysfunction and POTS

a significant number of people with EDS and hypermobility experience dysfunction of the autonomic nervous system, which controls heart rate, blood pressure, and blood flow. A common consequence is postural orthostatic tachycardia syndrome (POTS). In POTS, standing up triggers an abnormally rapid increase in heart rate, along with symptoms such as lightheadedness, faintness, brain fog, and visual changes. Because collagen is abundant in blood vessels, connective tissue laxity in EDS may allow blood to pool in the lower limbs, making the autonomic system work harder to maintain blood pressure to the brain. The result is a form of dizziness that is closely tied to posture and position.

Cervical Spine and Neck Instability

Hypermobility also affects the cervical spine and the upper neck. Laxity in the ligaments that support the head can lead to subtle instability of the upper cervical spine, which may compress or irritate structures involved in balance. The brainstem, the vestibular nuclei, and the nerves that exit the neck can all be affected. People with this pattern may experience dizziness with neck movement, headaches, and a feeling of being disconnected from their surroundings. This is sometimes called cervicogenic dizziness, and it is commonly seen in hypermobile individuals.

Vestibular System and Inner Ear

The inner ear relies on delicate membranes and fluid-filled canals to sense motion and gravity. Connective tissue abnormalities in EDS can make these membranes more compliant and prone to deformation. This can lead to conditions such as superior canal dehiscence syndrome or even a higher tendency to develop benign paroxysmal positional vertigo (BPPV), where small calcium crystals become displaced and cause brief episodes of spinning vertigo with head movements. Even without a specific inner ear diagnosis, many hypermobile patients report vague persistent unsteadiness or a rocking sensation that cannot be explained by conventional vestibular tests.

Fatigue and Chronic Pain

Chronic pain and fatigue are hallmarks of EDS and hypermobility. Pain distracts the brain, and fatigue reduces the cognitive resources available for processing balance signals. Medications used to treat pain, anxiety, or muscle spasms can also cause dizziness as a side effect. This is not to say that dizziness is merely psychogenic, but rather that the interplay between physical symptoms and the nervous system cannot be ignored. Sleep disturbances, which are common in hypermobility, further worsen the sense of unsteadiness the next day.

Distinguishing Types of Dizziness

Not all dizziness is the same, and identifying the specific type is essential for treatment. Common descriptions include:

• Lightheadedness: a feeling of faintness or impending loss of consciousness, often associated with POTS or low blood pressure.
• Vertigo: a sensation of spinning, either of the surroundings or of the head, usually related to the inner ear or brainstem.
• Unsteadiness: a feeling of imbalance without a spinning sensation, often related to proprioceptive or cervical issues.
• Brain fog or dissociation: a sense of unreality, detachment, or difficulty concentrating, which may accompany dizziness and is common in autonomic dysfunction and chronic fatigue.

Seeking a Diagnosis

There is no single test for EDS or hypermobility spectrum disorder. Diagnosis is usually based on a detailed history and physical examination using the Beighton scoring system, which measures joint mobility at key locations. When EDS is suspected, a medical professional may look for additional features such as skin stretchiness, abnormal scarring, and a family history. Because dizziness has many potential causes, an evaluation for dizzy symptoms may involve physical therapists, neurologists, cardiologists, or ear, nose, and throat specialists. A tilt-table test can help diagnose POTS, while magnetic resonance imaging (MRI) may be used to look for cervical spine issues or inner ear abnormalities.

Managing Dizziness with Hypermobility

Management of dizziness related to EDS and hypermobility is highly individualised and often requires a combination of approaches:

Physical Therapy and Exercise

Physical therapy with a practitioner experienced in hypermobility can strengthen the muscles around lax joints, improving support and correcting faulty movement patterns. Focusing on core stability, joint position awareness, and low-impact strengthening can reduce the burden on the nervous system. Aquatic therapy is often helpful because water provides gentle resistance without excessive joint strain. Vestibular rehabilitation therapy (VRT), which is designed to retrain the brain’s response to balance signals, can be effective for people with dizziness, including those whose dizziness originates from the neck or proprioceptive system.

Addressing Autonomic Dysfunction

For dizziness caused by POTS or blood pooling, several lifestyle strategies can help. Increasing salt and water intake under medical guidance can boost blood volume. Compression garments, particularly those that cover the legs and abdomen, can reduce the amount of blood that pools when standing. Physical countermanoeuvres, such as crossing the legs or tensing the lower body before standing up, can also prevent fainting spells. In more severe cases, medications may be prescribed to stabilise heart rate or blood pressure, but these should be managed by a healthcare professional.

Neck and Postural Care

Good posture and neck alignment can reduce stress on the cervical spine. Using a supportive pillow, avoiding prolonged looking down at phones, and taking regular breaks from static postures are all useful. Physical therapy may include gentle mobilisation techniques and proprioceptive retraining for the neck. In rare cases of severe instability, occupational therapy or bracing may be indicated, but this must be assessed carefully by a specialist.

Education and Self-Management

Understanding the connection between hypermobility and dizziness is empowering. Many people find it helpful to track their symptoms and identify triggers, such as stress, dehydration, poor sleep, or abrupt position changes. Learning to pace activity, avoid overexertion, and maintain regular sleep schedules can reduce both fatigue and dizziness. Emotional support and cognitive behavioural therapy can help people cope with the anxiety that often accompanies chronic dizziness.

Living with Hypermobility and Dizziness

Although dizziness can be frightening and disabling, there is a clear path toward improvement. The key is to use a multidisciplinary approach that addresses the underlying connective tissue disorder, the resulting physical overload, and the nervous system’s response. With proper support, most people can learn how to manage their symptoms, prevent falls, and maintain an active life. If you experience chronic dizziness and hypermobility, speak to a healthcare provider who is familiar with these conditions. Even when the journey takes time, a correct diagnosis and a tailored plan can make a profound difference.