Hypermobility: A Condition, Not a Diagnosis

Hypermobility is not a diagnosis, but a condition says Rodney Grahame, M.D., one of the world’s leading experts on hypermobility syndrome and autonomic neuropathies. Dr. Grahame spoke at the Rheumatology Nurses Society 9th annual conference recently held in Cleveland.

In the 1960s, hypermobility was dismissed as joint pain as a result hypermobility, but today, it’s recognized as a complex condition in which pain management is essential.

“Commonly, a doctor will tell a patient, ‘It’s only hypermobility, but that is dismissive. It dismisses the condition as one that is barely deserving of further consideration - which is not very comforting if you have severe symptoms. If you don’t have an abnormal blood test, you are often given a swift kick to the door,” he said. [[{"type":"media","view_mode":"media_crop","fid":"50897","attributes":{"alt":"Rodney Grahame M.D. (©UBM Medica)","class":"media-image media-image-right","id":"media_crop_8117097055004","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"6239","media_crop_rotate":"0","media_crop_scale_h":"0","media_crop_scale_w":"0","media_crop_w":"0","media_crop_x":"0","media_crop_y":"0","style":"font-size: 13.008px; line-height: 1.538em; float: right;","title":"Rodney Grahame M.D. (©UBM Medica)","typeof":"foaf:Image"}}]]

A negative blood test doesn’t necessarily mean the absence of disease, he said. “To assume that it is psychologic is bad medicine,” he said.

Dr. Grahame, a distinguished leader in the field of rheumatology and a past editor of the journal Rheumatology, states that a diagnosis is essential for a proper clinical assessment and management plan. The condition is associated with a gradual downward spiral of loss of function leading to disability. The condition usually affects high performing people in the arts who fall to the disease in their prime. He suspects that the late Michael Jackson may have had hypermobility, he said while pointing to a picture of Mr. Jackson as a young child with his left leg fully bent backward to the left. 

In the 1990s Dr. Grahame launched the Hypermobility Unit in London. He has also led efforts to pen treatment guidelines for hypermobility. Treatment, he said, is a team approach that includes specialists in occupational therapy, podiatry, nursing, pain psychology and self-management.

Hypermobility is often misdiagnosed for fibromyalgia, osteoarthritis, seronegative arthropathy, psychogenic rheumatism, depression and chronic fatigue syndrome.  [[{"type":"media","view_mode":"media_crop","fid":"50860","attributes":{"alt":"Hypermobility Skin Test (©UBM Medica)","class":"media-image media-image-right","id":"media_crop_5656484138242","media_crop_h":"0","media_crop_image_style":"-1","media_crop_instance":"6236","media_crop_rotate":"0","media_crop_scale_h":"0","media_crop_scale_w":"0","media_crop_w":"0","media_crop_x":"0","media_crop_y":"0","style":"font-size: 13.008px; line-height: 1.538em; float: right;","title":"Hypermobility Skin Test (©UBM Medica)","typeof":"foaf:Image"}}]]

As the first point of contact, rheumatology nurses, Dr. Grahame said, are in a unique position to identify patients for this condition by taking a thorough history for the rheumatologist and by becoming familiar with the clinical manifestations, which for hypermobility type Ehlers-Danlos syndrome, include unusually large range of joint movement; unstable large and small joints; joints that dislocate easily; chronic joint and limb pain often early in life and some people with this condition may have skin that is soft and stretchy.