UK patients with hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome wait an average of 19 to 21.7 years for a diagnosis, University of Edinburgh research has found. Until then, the exhaustion and aching are blamed on something else.

Joint hypermobility syndrome is a connective tissue disorder in which the ligaments holding the joints together are loose or weak. Pain in the joints and muscles is the most common symptom, but it is rarely the only one.

Why Loose Joints Cause Fatigue

Hypermobile joints are less stable, so the muscles must work harder to keep them in place. That constant effort leads to muscle fatigue, soreness, clumsiness and exhaustion.

The brain also has to monitor and correct joint positioning, which takes extra effort. This can affect heart rate, digestion and energy levels, bringing on dizziness and brain fog.

Joint pain often breaks up sleep, which leaves people tired the next day. Postural orthostatic tachycardia syndrome, or POTS, affects circulation and is common in hypermobility, causing dizziness and fainting.

More Than Just Sore Joints

The list of linked problems is long. Repeated sprains, dislocations, joint stiffness, poor balance, thin, stretchy skin and bladder or bowel problems all feature, along with tiredness that lingers even after rest.

Digestive trouble is no coincidence, because the connective tissue lining the gut is stretchier too. Links between these disorders and neurodiversity such as autism and ADHD have also been established.

The impact can be severe. Dr Stephanie Barrett, a consultant physician and rheumatologist, says she repeatedly sees patients in her clinic who cannot work because of severe brain fog linked to hypermobility.

When Symptoms Suddenly Get Worse

Symptoms can worsen, or first come to light, after a stressor, research suggests. Dr Jessica Eccles, a researcher on brain-body interactions, says that might be puberty or menopause, and some papers suggest a link to Covid.

Someone can go through much of life simply being flexible. An outside environmental stressor then comes along, and everything gets worse at once.

Years of Waiting for Answers

The same Edinburgh research found under a third of those diagnosed said their GP had started management for the disorder. Only 13 per cent had access to a knowledgeable clinician.

Part of the delay is that there is no dedicated, standalone clinical guideline for diagnosis. Dr Eccles says assessment can be a 'postcode lottery', which depends on where a patient lives and what is available there.

She adds that the disorders appear to affect women more, and that women's health is not as well researched as problems affecting men.

A GP will usually check joint flexibility using a nine-point scoring test. Blood tests or an X-ray may follow to rule out other conditions, such as arthritis.

What Doctors Suggest for Relief

There is no cure, and Dr Eccles says no single treatment fixes everything. The main approach is improving muscle strength and fitness, with a possible referral to a physiotherapist, occupational therapist or podiatrist.

Dr Barrett says physiotherapy works by toning and strengthening the key muscles that hold the skeleton together. She feels telling sufferers to do a bit of physio and get on with life is unhelpful.

Pacing matters, because overdoing activity leads to post-exertional malaise, where fatigue worsens after the effort. Staying hydrated, eating balanced meals and using supportive pillows in bed all make a difference.

For pain, paracetamol and anti-inflammatory painkillers are the usual starting point, and a pharmacist can advise. A GP can prescribe something stronger, while warm baths and heat-rub cream can ease the stiffness.

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Frequently Asked Questions

  • What are hypermobility spectrum disorders?
    Hypermobility spectrum disorders are connective tissue disorders where ligaments holding the joints are loose or weak, leading to joint and muscle pain.
  • Why do hypermobile joints cause fatigue?
    Hypermobile joints are less stable, requiring muscles to work harder to maintain joint position, leading to muscle fatigue and exhaustion.
  • What are common symptoms of hypermobility spectrum disorders?
    Common symptoms include joint pain, muscle fatigue, clumsiness, dizziness, brain fog, and digestive issues.
  • How can symptoms of hypermobility spectrum disorders be managed?
    Symptoms can be managed through physiotherapy, pacing activities, staying hydrated, eating balanced meals, and using supportive pillows. Pain can be managed with medication and heat therapy.