What is it like living with Fibromyalgia—the invisible illness

You could feel perfectly active one day and incapacitated with pain the next—that’s just how Fibromyalgia works. And it’s mainly because of this unpredictable temperament that the ailment still lurks in the shadows with a veil of misinformation around it.

By Adarsh Soni
12 May 2021

Suraj Prakash, 41, is a school teacher for special needs children. Based in a quaint Himalayan town named Sundernagar, Prakash is kind, efficient and patient—three qualities an educator like him must possess. He is physically fit and has never had any health scares in the past. But when the usual workout pain was acting up for a little too long, he got worried. The man who could once travel several kilometers for work after bench pressing his entire body weight in the morning was now incapable of even sitting up straight.


What is fibromyalgia?
“It happened overnight,” he says. “I felt a wave of mind chilling pain travel down from my spine to my feet and since then that’s where it has taken a seat.” All of a sudden a healthy young man acquired a disability, and the doctors were clueless as to what caused this muscular flare. The closest they’ve come to is degenerative disc disease, which might not even be accurate. “We’ve tried everything—physiotherapy, homeopathy, and even Ayurveda. But nothing seems to stick. And at the end we decided to travel to a multi-specialty hospital and during that car ride I had an epiphany that this was going to consume me; but whatever it was, I wanted it out of my body,” Prakash added. He was eventually diagnosed with a special type of chronic pain, also known as Fibromyalgia.


Understanding the symptoms of Fibromyalgia
Fibromyalgia is an illness characterised by musculoskeletal pain that later leads to fatigue, insomnia, and several other mental health-related issues like anxiety and depression. Cognitive difficulty or brain fog is another common symptom that is often reported.
Sometimes emotional, physical or psychological trauma can cause Fibromyalgia. In some individuals, the symptoms can appear suddenly and accumulate over time—migraines and irritable bowel syndrome for instance.
According to Dr Neha Chetty, a former physiotherapist at UR Life, Hyderabad, thorough assessment and a comprehensive treatment plan is very important in case of Fibromyalgia. A lot of times it gets wrongly diagnosed due to incorrect evaluation—leading to ineffective treatment and dissatisfaction of the patient.


“As a physiotherapist, it’s essential to make the patient understand the close relationship between physical and mental factors in the case of fibromyalgia and design the treatment accordingly to ensure 100% compliance and improvement of the patient,” she adds.

And how common is this disease? A guide from the National Health Portal states that anywhere around 2-4% of the Indian population may suffer from Fibromyalgia—a group of people large enough to be taken seriously. But because of little to no availability of reliable resources, the patients keep suffering in silence—patients like Prakash who live in small towns. The exact reasons behind this chronic illness are unknown, but risk factors like trauma, arthritis and/or genetics are generally considered responsible.



Receiving treatment for fibromyalgia
There is no known cure for this illness, but according to the Centers for Disease Control and Prevention, a healthy cocktail of medicine, nutrition and treatments like yoga, regular massages and cognitive behavioural therapy can ease the symptoms that persist on the surface, and help the patient lead a somewhat normal life.
Sometimes pain killers may also be prescribed to treat some symptoms of Fibromyalgia. Since research links trauma to Fibromyalgia, it is wise to consider speaking to a mental health expert or a therapist to deal with emotional and psychological concerns.
“I’ve made it a habit to take a walk twice a day using my crutches—something I never thought would’ve been possible last year. It still hurts; sometimes I wake up in the middle of the night with excruciating pain all over my body but I guess I’ve just gotten used to it now. The pain might be potent, but overtime I’ve taught my body to exert authority over it. Sometimes you just need to oil your moving parts and keep going, right?” Prakash says.


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