Why is fibromyalgia so misunderstood? – Patient

Fibromyalgia is a chronic widespread pain disorder, estimated to affect roughly one in 25 people. But, despite being relatively common, fibromyalgia remains a seriously misunderstood condition, surrounded by stigma, confusion and long delays in diagnosis. So what is it really like to live with fibromyalgia, and why do we still understand so little about it?

Anywhere between 2% and 6.8% of the population will suffer from fibromyalgia at some point in their lives. “It is typified mainly by pain, but patients report that in a variety of different ways. It can include pain generally, as an ache. It can be described as a sharp, burning, pins and needles type pain. It can be funny sensations,” explains Dr Attam Singh, a consultant in Pain Medicine from The Fibro Clinic.

“We see the whole gamut, and I think it’s important to note that one person’s pain may well be different to another’s. Generally the pain tends to flit around the body, and may change from day to day, or possibly from hour to hour, and that’s the problem – patients generally aren’t able to predict where the pain’s going to be next, and treating pain that moves is extremely difficult,” he adds.

Besides pain, Singh explains, fibromyalgia is associated with two other main symptoms: fatigue and brain fog or difficulty concentrating (sometimes referred to as ‘fibro fog’). “The fatigue might be mild fatigue towards the end of the day, or it might be something that renders the patient bedbound. Likewise, difficulty concentrating and processing things can have a major impact on patients’ work and family lives,” he says.

While neuropathic painkillers are an option, to “turn down the hypersensitive nerves within the brain”, Singh explains, treatment largely involves looking at lifestyle changes and tracking triggers to help patients better manage the highs and lows of living with constant pain and fatigue.

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