Fibromyalgia International Awareness Day 12th May 2010

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Fibromyalgia Association UK has been campaigning for greater awareness of fibromyalgia and better understanding by medical professionals for 15 years. Yet we are still hearing from patients that they are being told there is nothing we can do, you must learn to live with it. We know this is not always the case, there are people who have kept pace with developments and offer the range of treatment and support needed.

However we despair when we hear of yet another person deciding that they cannot live with the pain and lack of treatment. And decide the only way to get relief is through death.

At the recent British Society of Rheumatology Conference in Birmingham last month Prof Boudewijn Van Houdenhove from Belgium was asked about the suicide rate amongst people with fibromyalgia. The answer he gave was that there was no awareness of a study on this topic, but he would be surprised if rates were low given the “huge amount of misery people suffer.”

In the UK the data for fibromyalgia is not collected, so the Department for Health does not even know how big the problem is. In other countries with a similar lifestyle to the UK the estimate is between 2.9% and 4.7%. Using the lowest estimate this means over a million people in the UK directly affected.

A common quote when a diagnosis is given is that fibromyalgia is not life threatening. We know that sometimes it can be and it is certainly life changing and depending on the severity, life limiting for the person themselves and those around them.

But it is not just the one person with the diagnosis that is affected. Family life can also be disrupted on a daily basis.

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigues ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

Besides pain and fatigue, fibromyalgia symptoms often include –

Unrefreshing sleep – waking up tired and stiff
Headaches – ranging from ordinary types to migraine
Irritable bowel – alternating diarrhoea and constipation, sometimes accompanied by gas in the abdomen or nausea
Cognitive disturbances including lack of concentration, temporary memory impairment and word mix up
Clumsiness and dizziness
Sensitivity to changes in the weather, noise, bright lights smoke and other environmental factors
Allergies

Once other medical conditions have been ruled out through tests the patient’s history, diagnosis depends on two main symptoms:

pain in all four quadrants of the body for at least three months together with
pain in at least 11 out of 18 tender point sites when they are pressed.

Fibromyalgia often develops after some sort of trauma that seems to act as a trigger, such as a fall or car accident, a viral infection, childbirth, an operation or an emotional event.

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