Thursday, 20 September 2012

Why I am wibbly wobbly- What is hypermobility syndrome?

Hypermobility syndrome, or HMS (otherwise knows as joint hypermobility syndrome or Ehlers-Danlos hypermobility type (EDS III) is a hereditary connective tissue disorder. Due to a genetic defect, the body does not make collagen correctly. This leads to joints which can move outside of the normal range of movement, ie hypermobile joints. This does not necessarily mean being bendy like a gymnast or ballerina. Many people have generalised joint hypermobility, meaning that they have many hypermobile joints which cause no problems. Others are symptomatic and  therefore meet the criteria for a diagnosis of HMS.

People with HMS often develop painful and stiff joints. Some people are only affected in some joints, others have more widespread problems. In addition to joint pain, sufferers may experience muscle spain and cramps due to the muscles becoming overworked as they try to support the loose and weak joints. Joints are more easily injured- dislocations, subluxations (partial dislocations), tendonitis, sprains and strains may occur. Healing may be slower, so injuries are more troublesome.

There is another group of conditions which are related to joint hypermobility. Weak connective tissue throughout the body can lead to problems including IBS, gastroesophageal reflux, spinal disc problems, bladder problems, pelvic prolapse, hernias, varicose veins, striae (stretchmarks) and mitral valve prolapse. Some people also have problems with their autonomic nervous system, the part of the nervous system which regulates breating, circulation and digestion, leading to symptoms such as orthostatic intolerance (eg POTS), lightheadness, dizziness and palpitations. Dysautonomia can lead to the body over-responding to physical and emotional stresses, and over-producing adrenalin. Poor proprioception (sense of the body's location in space) can be a further issue, increasing risk of injury and even affecting the sense of self.

In addition, patients generally experience fatigue, sometimes accompanied by insomnia and/ or unrefreshing sleep. It appears that hypermobility syndrome may predispose to fibromyalgia and chronic fatigue. There is also an increased incidence of anxiety in hypermobile patients, possibly due to the body's excessive adrenalin response. Depression may also develop, especially as many people are undiagnosed for a period of years, often being told their problems are psychological, in their heads, or even that they are malingering or attention seeking. Family and friends may also be unsupportive, especially prior to diagnosis. Dr Alan Pocinki writes:

"Often, people who suffer from hypermobility syndrome are called hypochondriacs
or lazy because they avoid many everyday activities, because these
activities that cause them pain. Most of them don’t look sick and, as a result,
friends, colleagues, and even doctors can be unsympathetic. Furthermore, they
may spend years unsuccessfully searching for the cause of their chronic pain
and other symptoms because many doctors are unfamiliar with hypermobility
syndrome and its complex set of symptoms. Such long delays and lack of
understanding can lead to frustration (with doctors and with daily life), anger,
anxiety, and depression."

There is no cure for hypermobility syndrome, but there are a number of treatments and measures which can reduce pain and other symptoms, increasing quality of life and wellbeing. These include physiotherapy, and a carefully planned program of exercise and strength-building. Pain management, painkillers and education in techniques which support living with fatigue (eg pacing) can all be helpful. The symptoms of some related conditions, such as IBS, reflux, depression and autonomic dysfunction, can also be improved through medical care and the teaching of management strategies. However, this requires access to medical professionals and other experts, such as fitness instructors, who are understanding of, and educated on, the subject of hypermobility. This is proving, for many, to be very difficult to find, especially if privately funded support is out of reach. Thankfully there is a wealth of literature, online resources and support, and there are self-help measures that can be taken, though caution, and discussion with your doctor, physiotherapist or another appropriate professional (if you have one who is interested and helpful) is always a wise consideration.

For more indepth information, and an explanation of the current diagnostic criteria, please go to Joint Hypermobility Syndrome Article, Dr Alan Pocinki
Ehlers-Danlos Syndrome, Hypermobility Type

Other resources ionclude:
Hypermobility syndrome assocation
"Guide to Living with Hypermobility Syndrome", Isobel Knight

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