Physiotherapy and self-management

Chronic pain in the Ehlers–Danlos syndromes, especially in hypermobile EDS, is very common and may be severe. It may be widespread or it may be limited to one area of the body such as a limb. Headaches and gastrointestinal discomfort can occur as well as joint, muscle and nerve pain. Management strategies include physiotherapy, medication, and sensible use of medical equipment such as splints and braces.

There is overlap in the symptoms of hypermobile Ehlers-Danlos syndrome and ME/chronic fatigue syndrome, though they are not the same condition. Sleep disorders, chronic pain, muscle deconditioning and nutritional deficiencies can all contribute to fatigue in hEDS. There is no medication to alleviate the tiredness itself, but certain drugs are effective for problems that go on to cause fatigue. Physiotherapy, prevention of deconditioning and good nutrition are also recommended.

Orthopaedic surgery in the Ehlers–Danlos syndromes is controversial and how much of a role it should play in their management is unclear. Conservative treatment such as physiotherapy is preferable, but if this fails then for some people joint stabilisation and nerve decompression procedures can provide relief.