Question

My daughter, who is now in her early twenties, has had ME/CFS since being a teenager. We have always felt that her joints are more flexible than normal. She often has strains and sprains and has dislocated her knee in the past. Her doctor is now querying whether she may now have a hypermobile joint condition called Ehlers Danlos Syndrome. Are there any links between hypermobile joints and ME/CFS? Or is this just a coincidence?

Answer

Hypermobile joints are more lax and flexible than normal. They are quite common in childhood and adolescence with 10 – 15% of healthy children being affected. In some cases the symptoms will lesson with age but this not always so. There is now quite a lot of good quality research evidence (which doctors are generally unaware of) from both the UK and the USA to indicate that hypermobile joint syndromes occur more frequently in people with ME/CFS. They include a genetic disorder of connective tissue – a key content of the ligaments – called Ehlers Danlos Syndrome.

Hypermobile joints can become painful. They can also be associated with various non-joint symptoms and signs that result from problems with the connective tissue. These include orthostatic intolerance, stretchy or fragile skin, delayed wound healing and early onset varicose veins. Diagnosis is normally confirmed through the use of an assessment questionnaire called the Beighton Score. This is a test that measures joint hypermobility and involves simple maneuvers, such as bending the little finger backward to check the joint angle. The Beighton score uses a nine-point scoring system. The higher the score, the more flexible the joints are.

Professor Peter Rowe, a leading expert in joint hypermobility and ME/CFS from John Hopkins Hospital, USA, has also observed that people with ME/CFS who have joint hypermobility also have postural abnormalities – including a head-forward posture, a rounded appearance of the thoracic spine, and increased lumbar curvature.  Rowe et al have reported that a reduced range of motion of the limbs and spine was significantly more common in adolescents and young adults with ME/CFS than in carefully matched controls (Rowe et al 2014). 

Proper management of hypermobile joints is very important – especially from a physiotherapist who is experienced in dealing with hypermobile joint syndromes and is aware of inappropriate exercise in people who have ME/CFS.  The aim is to improve the weakened anatomy around the joint, and to improve posture and balance. Although there is no specific treatment for hypermobile joints, drugs can be used for pain relief (eg paracetamol or ibuprofen) – as can warm baths and heat rub creams.  There are NHS and private hospital-based referral centres where expert advice on both diagnosis and management can be obtained if necessary. 

Read more: Hypermobile Joints, Hypermobility.

Further information: 

• The NHS: Ehlers Danlos Syndromes.
• Ehlers Danlos Support UK work to minimise the impact of EDS by making its diagnosis, treatment and management accessible to everyone when they need it. They provide support through local physical and virtual support groups led by trained volunteers and via a freephone helpline. 
• The Beighton score is a test that detects joint hypermobility syndrome. The test uses a nine-point scoring system that measures the flexibility of certain joints. A positive Beighton score means you likely have joint hypermobility syndrome.

Research:

• Science Daily: Flexible Joints Associated With Chronic Fatigue Syndrome | September 2002
• Nijs et al. Generalized joint hypermobility is more common in chronic fatigue syndrome | January 2006