For fibromyalgia patients, suffering in silence is no longer an option. Swati Basu Das sheds light on how this once misperceived ‘phantom’ disorder is finally being given the attention it deserves within the medical community.
Pain wears many faces, both physical and psychological – and are so often intertwined. As often as it presents outwardly – a fracture, a cut, a bruise, an injury…so too does it present (enough to lay us low) without any visible outward signs at all. This is perhaps the most insidious aspect of the disorder known as fibromyalgia – that the sufferer is in acute pain without any one pinpointed cause.
The prestigious US-based Mayo Clinic classifies fibromyalgia as a disorder ‘characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood disorders.’ In other words – you’re aching or experiencing shooting pains all seemingly invisible to conventional diagnoses. Sufferers, as a result, may often feel judged by family, friends, or even healthcare practitioners – having their symptoms passed off as being ‘made up’; and it’s this ordeal of having to provide physical evidence to justify the reality of the throbbing pain they’re experiencing in order to convince those around them that can also have significant implications on a patient’s mental health too.
To experience chronic, undetectable pain – as fibromyalgia almost always presents – is to often endure judgment and cynicism in the face of an already challenging situation. Considered to be an ‘invisible’ disease, fibromyalgia patients tend to be misdiagnosed due to a lack of specific tests for the condition, coupled with symptoms overlapping other illnesses that make its presence difficult to substantiate. A disorder that affects the muscles, soft tissues, and any number of tender trigger points throughout the body, fibromyalgia’s calling card is pain, fatigue, and sleep disturbance.
Even celebrities such as musician Lady Gaga, and actresses Janeane Garofalo and Susan Flannery have opened up about their own struggles with fibromyalgia – and how every ache is a reminder of how debilitating the condition can become when chronic fatigue also sets in.
“Fibromyalgia doesn’t cause any abnormalities in routine clinical laboratory testing,” explains Dr. Sunuraj Sivarajan, a Specialist in Internal Medicine at NMC Hospital in Ruwi. “It’s necessary to know the complex, regional pain syndrome to spearhead a treatment for fibromyalgia – as the diagnosis remains mostly overlooked and untreated. The most common way of tracing fibromyalgia is by palpation in multiple soft tissue sites during physical examination. This checkup reveals the tenderness of muscles and areas around tendon insertions, teamed with other somatic symptoms.”
Facing the challenge
In the case of fibromyalgia, pain may not make you look sick – when in truth a person is in fact experiencing a great deal of physical discomfort within. Facing indifference from friends, family, or even colleagues can make a fibromyalgia diagnosis all the more challenging, as patients who feel judged by those around them can face added mental and emotional distress which can lead to further feelings of anxiety or even depression. Coping with chronic, nagging pain and the feeling of frustration when people refuse to believe you’re actually suffering creates an added stigma around the disorder.
“Chronic pain is much more complex than short-lived painful conditions,” says Dr. Sivarajan. “Even the perception of pain and painful stimulus varies from person to person. Sometimes a person suffering from chronic pain remains active, while the same pain makes someone else feel disabled.”
Significant traumatic injury with outward physical presentation tends to draw sympathy – a broken arm in a cast, a burn on our leg, for example. But chronic internal pain quickly becomes difficult to comprehend as there is no outward physical change.
Case in point – 32-year-old Asma*, an IT professional based in Muscat, and a fibromyalgia sufferer. She says: “I have severe morning pain, stiffness, and fatigue that follows me all through the day. People think I’m lazy as I don’t look sick from the outside, but my body aches from within. Most people don’t believe me – and even some doctors have suggested that I should visit a psychiatrist instead. It’s even more stressful to make the other person in front of me to understand the truth about my pain and fatigue.”
Given its complexity, fibromyalgia may easily remain undiagnosed for years. And, although there is no cure-all pill for the disorder as of yet, experts believe in a multi-faceted approach to managing the condition via a combination of alternative treatments, exercises, and lifestyle change that can help potentially alleviate symptoms.
“It’s important to be familiar with the ailment – as a failure to correctly diagnose fibromyalgia makes it even more difficult to treat its symptoms,” states Dr. Sivarajan. “A generalized musculoskeletal pain is more likely in women between the ages of 20 and 55 – and, quite often, this illness reveals its true self along with other health disorders. Fibromyalgia comes along with other ailments like headaches, jaw pain, and irritable bowel syndrome. Sometimes treatment involves more than one healthcare provider. Besides medication, physiotherapy, and dietary routine, stress management should also be taken into consideration. Staying physically active can help relieve symptoms of pain, stress, and anxiety.”