The Common Man Speaks

17Oct/124

Awareness needed ASAP, say Fibromyalgia patients

By: Keyur Seta

Twelve years ago Sagarika Chakraborty, then in her teens, started suffering from a terrible headache which refused to subside even after undergoing medical treatment. Due to this, it was concluded she has Migraine. She started medication for that as well but to no avail. Later on, she developed a whole lot of other health issues that just wouldn’t get cured. She underwent tests after tests without any conclusion. “In fact, there is not a single test I haven’t undergone,” she said at The World Arthritis Day meet in Mumbai recently. The event was an initiative by rheumatologist Dr Shashank Akerkar.

Since she was appearing absolutely normal with the tests showing no signs of any illness or disease, people started believing she is faking an illness just to stay away from studies. Worse, questions were even raised about her psychological wellbeing. Sagarika lived with such physical and emotional baggage for 12 years until she came to know from a doctor in Hyderabad that she is suffering from a rare condition called Fibromyalgia. And it was only a year back when she was able to start proper treatment for the disease from Dr Akerkar.

“For 12 years I suffered mis-diagnosis and took over 36 medical opinions. God forbid this should not even strike my worst enemy. I suffered but pledged that others around me shouldn’t. So I am here to talk,” she said.

There are only a handful of people in India who have heard about Fibromyalgia. In fact, people might take some time before even pronouncing or spelling it properly. Fibromyalgia is a chronic disorder characterized by widespread musculo-skeletal pain, stiffness and tenderness of muscles and joints without detectable inflammation. But that is not all. Patients suffering from Fibromyalgia also experience sleep disturbance, fatigue, irritable bowel movements, depression, anxiety, stress, hypersensitivity to light, sound, heat and cold, etc.

Anuradha Khanna Pentapalli speaking about Fibromyalgia at the World Arthritis Day

Some patients also show symptoms of Parethesia (feeling pins and needles), cognitive dysfunction and memory problems (known as Fibro Fog). Sadly, the symptoms are not reduced to these. While revealing few other symptoms, Sagarika says, “I can’t move for a few seconds after I sit for long. Sometimes, a thousand pins prick my body and my eyes. It locks my jaws and dehydrates me. I have nerve pinch in seven parts of my body. There are mornings when my fingers won’t move. My nostrils hurt and a certain nerve throbbing is almost visible through the skin.”

Needless to say, emotional trauma goes hand in hand with Fibromyalgia. It is been found that a very high percentage of Fibromyalgia victims are females. In fact, the female to male ratio for this disease is 9:1.

What is worse is that there is no sure shot cure for Fibromyalgia. There is treatment available but it can only help in reducing the symptoms or controlling the disease. And since there are a wide range of symptoms, undergoing a single treatment doesn’t work. A patient is prescribed medical drugs but at the same time, it is vital for him or her to undergo physical exercises as prescribed.

As patients suffering from Fibromyalgia appear totally normal, the disease is also known as ‘Invisible Illness’. “If an employee is suffering from Fibromyalgia, he or she has to often take leave from work. This becomes difficult because the patient looks physically normal. Hence, most of the patients quit their jobs to work part time as working full time becomes extremely difficult,” said Anuradha Khanna Pentapalli, another patient suffering from Fibromyalgia, at the meet.

It is due to total lack of awareness that Fibromyalgia has derived the nickname of ‘Invisible Illness’, especially in a country like India. This was enough to prompt Anuradha to launch an awareness campaign for the disease in the form of a website called – http://www.fibromyalgiaawareness.com/. The website provides complete information for a layman on Fibromyalgia including its meaning, symptoms, tips on how to live with it and most importantly, comments from patients. The website also has a Facebook page - http://www.facebook.com/fibromyalgiaawarenesspage.

Anuradha and Sagarika along with a group of individuals are also all set to start a non-profit organization called The Purple Pact which will aim at setting up centers with specialized facilities for chronic pain patients. But for that, one needs awareness.

“There are around 3-6 % of world population suffering from Fibromyalgia. But the percentage of patients in India is just unknown! Due to the lack of awareness, naturally people won’t understand what a patient goes through.”

Both Sagarika and Anuradha are thankful to their doctor Shashank Akerkar for creating awareness on Fibromyalgia through World Arthritis Day. “It is vital to create awareness. If people start accepting the disease and the problems associated with it, it will certainly make life better for us,” sums up Anuradha.

Dr Shashank Akerkar (Click to enlarge)