Mystery pain with no cure
IT'S probably been around for centuries but only now is it being accepted as real. Once known as rheumatism and fibrositis, "fibromyalgia" is the word now used.
The illness is a long-term disease causing severe pain in muscles and fibres. It is not classed as a form of arthritis, is not infectious, can affect anyone but is more common in women. The cause is still a mystery and there seems to be no cure. Patients complain they ache all over and have other symptoms such as fatigue, morning stiffness, sleep disturbance, tingling or numbness of the skin, irritable bowel and bladder, short-term memory problems (fibrofog), anxiety, depression and headaches.
This confusing cluster of symptoms makes it easy to misdiagnose. X-rays or blood tests are not much help in detecting it. Sometimes patients are told it's "all in their head".
Severe stress is a suspected cause. Those with fibromyalgia have out-of-synch neurotransmitters – the chemicals that create and control brain signals.
Not everyone with fibromyalgia has the whole range of symptoms, but if your doctor knows how to find them, nine specific tender points on each side of the body are usually painful to just light touch.
Treatment differs and the secret lies in being actively involved and having a clear understanding of this complex illness.
Most of the symptoms can be controlled most of the time. It's common to use low doses of antidepressants. Quitting smoking, eating healthy food, reducing stress, warming aching muscles and plenty of rest can all ease symptoms.
Exercise can be difficult if you're tired or in pain but it's the most important thing you can do for fibromyalgia. Gentle, low-impact, aerobic exercise for 15-20 minutes later in the day should also help you sleep. Swimming is excellent but walking, cycling and gentle massage suit some people.
If fibromyalgia sounds like you, get a correct diagnosis. Find a GP or rheumatologist (a specialist in muscle disorders) to take your concerns seriously. Sadly, some doctors still see this as a "wastebasket diagnosis" – thrown in with other emotional disorders. Family and friends sometimes have difficulty accepting it, as the symptoms are not obvious. So, if you can, get their attention, explain fibromyalgia to them and how you manage it and why you need their acceptance and support.
From my experience, people with fibromyalgia do better if they can take control of their own destiny, choose how they manage their symptoms, and discover there is a full, productive life to be had – often without medication.
Barbara Docherty is a registered nurse and clinical lecturer at the University of Auckland School of Nursing.