Sagarika Chakraborty, 30, can vividly recall the day she was diagnosed with fibromyalgia.  She was a student, very athletic, and on that particular day, deeply involved in an exciting Frisbee match. As she leapt into the air for a challenging catch, she lost her balance and fell to the ground. Though she wasn’t hurt, to her horror, she realized she couldn’t get up again. Her friends gathered around her and laughed, thinking that she – a robust, young woman – was playing a joke.

“I was frozen with pain and try as I might, I just couldn’t stand,” says Sagarika.

That afternoon, doctors diagnosed fibromyalgia syndrome—after arthritis, the most common condition to affect muscles, joints, bones and nerves. Unlike arthritis, however, fibromyalgia manifests in a wide range of symptoms that often differ between patients and can crop up at any time in life. The cause is unknown, but for some, like Sagarika, who had been injured in a car crash years earlier, it seems to be triggered by a traumatic injury, illness or infection. Studies have also suggested – though not proven – heredity may play a role.

Fibromyalgia, an amalgam of Latin and Greek roots, quite literally means ‘fibrous tissue and muscle pain.’ Sufferers typically complain of severe stiffness and tenderness, either localized or all over the body. For some, even a feather touch can cause acute discomfort. Chronic fatigue and joint pain, depression, lethargy, weight gain, and sleep problems are also associated with this difficult-to-diagnose condition —and can have significant impact on day-to-day life.

“Not enough is known about the syndrome to pinpoint what exactly causes it,” says Dr Madhujeet Gupta, consultant pain physician at PSRI hospital, New Delhi. “We do know that it tends to affect more women than men and that most sufferers find it difficult to get an accurate diagnosis.”

CHASING A DIAGNOSIS

Charukesi Ramadurai, 40, had suffered from constant body aches, tenderness, frequent migraines, and a sharp pain that shifted between various body parts since the age of 15. After more than two decades, she had accepted her problems as a mysterious, persistent part of life—no doctor or specialist had ever been able to explain or solve them. A chance encounter with a family friend, an orthopedic surgeon in Germany, changed her life.

“Though I realized that there was no cure, the diagnosis in itself was sweet relief,” she says. She was tired of people advising rest or yoga and wondering why she was always in pain. Finally, she had something to tell them.

“While many recommend yoga, there are days when even gentle breathing exercises and simple stretches can cause tremendous pain,” says Charukesi.

The vagueness of the symptoms themselves often make diagnosis a challenge, but awareness is an equal obstacle, says Dr Gupta.

“There is nothing more frustrating for sufferers when they are told – as they often are, even by physicians themselves who can’t pin point the cause of the pain – that their illness is imaginary,” he says. “And yet, despite all the belittling of their symptoms by friends, family, doctors, they are constantly in intense, chronic physical pain.”

The fallout of missing the condition can be severe. Chronic pain can alter the normal physiology of the brain and body, says Dr Gupta.

“In a fibromyalgia patient, the chemicals in the brain that are known to regulate/elevate our moods are all exhausted just trying to suppress the constant pain,” he says. “As a result, these patients are more vulnerable to depression than most.”

Fibromyalgia has been linked to low levels of serotonin – a neurotransmitter that influences moods, appetite, sex drive, pain perception, sleep and more – though it is not clear if the deficiency is a cause or effect. Many patients are prescribed anti-depressants as a matter of course, and some who experience side effects from the medication – excessive daytime sleepiness, weight gain, lethargy – find their life difficult in new ways.

Memory problems can also be a hazard of the condition, as research shows chronic pain may prevent the growth of new neurons in the hippocampus, a part of the brain related to memory and mood. Sagarika remembers being horrified when she felt she was slowly losing the photographic memory she’d taken pride in. Constant memory aids and exercises helped and today, she feels she has painstakingly restored her mental agility. But for many, the pain can prompt a slight, gradual cognitive decline.

MANAGING THE PAIN

Fibromyalgia has no cure. And for many, not even the most potent pain killers afford a reasonable degree of comfort. Medication to alleviate pain is prescribed on a case-by-case basis between patient and doctor, based on the severity of symptoms and accessible care.

Some fibromyalgia sufferers find relief in physiotherapy: Baskar Reddy, a clinical physiologist in New Zealand, recommends 10 to 15 minutes of gentle exercise in a heated pool every day.

“Spas and saunas are effective because they help increase core body temperature, soothe muscles and help create a healing zone for the patient to relax,” he says.

He cautions against overdoing the heat, though, no matter how tempting.

“More is not better,” he says, explaining that a 1 degree rise can increase blood circulation by 10%. “It feels really good, but it will cause water to flow into the space between the cells in the tissue and that translates into [more] discomfort if overdone.”

Other experts recommend mild exercise, such as walking, paired with 10 to 15 minute-intervals of rest sprinkled throughout the day. Learning to identify pain triggers is vital to managing the condition. Charukesi says a tightness in the neck muscles often precedes severe pain elsewhere.

“It’s best to know your body, its limitations and work around this,” she says.