My struggle with fibromyalgia

What makes it worse is that people, colleagues and even family members are sceptical, unable to ‘see’ anything physically wrong even when I am in excruciating pain

Representative image
Representative image

Rahul Gul

“It is fibromyalgia,” said the neurologist. There seemed to be a hint of a smile in his eyes above the mask, an image that bothered me for several days. He made the pronouncement after what seemed to me a perfunctory look at dozens of blood reports, spine X-rays and a brief physical examination.

I had never heard of the disease, and asked him if it was something serious. “It’s a psychosomatic disorder, which heightens awareness about pain signals in the body. The rest you Google,” he said, writing out a prescription and making a signal that indicated that the consultation session was over.

I did manage to ask him if the condition needed any other medical tests. “There’s no test for it. We can only diagnose it by excluding other conditions. It is functional pain, not structural,” he said.

On the way back home, I found myself feeling relieved that nothing serious had been diagnosed for the severe pain I had been suffering, primarily in my upper torso, for months, besides some other issues. That’s until I did Google search the term.

The most devastating search result was what nobody would want to hear about their medical condition: fibromyalgia syndrome (FMS)was incurable and manifestations chronic.

Symptoms matched what I have been suffering from, including insomnia, anxiety, an ever-present feeling of fatigue even after a good night’s sleep and Irritable Bowel Syndrome (IBS). It also accounted for conditions like a stiffness of the jaw muscles/ jaw joint (TMJ), perennial sinusitis and tenderness in the eye sockets due to drying out of the mucus membranes.

It also explained the lack of motivation I have been experiencing for the last several months, which further added to the sense of frustration and despair. This was, of course, besides the debilitating pain. The pain occurs at any or all of 18 tender points spread throughout the body, which includes the head, explaining the headaches I often experience, which no painkillers are able to relieve. It probably also explains the knee pain I have, though they said I have early osteoarthritis.

There is also muscle fatigue in the limbs, making even activities like having a shower and drying up afterwards an ordeal. One just feels like lying down very often to feel a little better, but the pain usually simply refuses to ebb.

What causes FMS is even more shrouded in mystery. According to Dr Vimal Kumar, a senior volunteer psychologist with New Delhi-based Sanjivini Society for Mental Health and counselling psychologist, Ipdidaah, one of the causative factors that might trigger it could be stress, depression and anxiety.

One of the ways to manage the condition, she says, is to undergo Cognitive Behaviour Therapy (CBT), in which a trained psychologist helps someone to identify negative thought patterns and tries to help them see things in the right perspective.

Dr Vipul Rastogi, Senior Consultant, Psychiatric and Neurology Dept at Medanta Multispeciality Hospital, concurs with the need to address the psychological aspects of the condition through therapy, besides the role played by anti-depressants. He also pointed out that fibromyalgia is becoming a common disorder nowadays, and stressed on the need to lead a active life rather than be bed-bound due to its symptoms which seem to tell you otherwise.

Indeed, head of rheumatology department at Max Hospital, Saket, Dr P.D. Rath, who treats the condition, prescribed ‘CBT’ at the very top of his prescription when I sought his help. At second place, he wrote ‘Tai chi’, a form of exercise that began as a Chinese tradition. It is based in martial arts, and involves slow movements and deep breaths. Tai chi is said to have many physical and emotional benefits, which include decreased anxiety and depression and improvements in cognition.

When I searched for this in Delhi, I chanced upon a person named Michael Rajchandra who runs a martial arts school in south Delhi called ‘The Way of the Enlightened Warriors’. He currently takes only online classes due to the pandemic, but he has been able to help me a great deal, not only through exercise but also through his training and insights as a martial arts practitioner.

It is the medicines prescribed to me which have had horrifying side effects. Or perhaps that’s the way they work, by numbing the central nervous system for a large part of the day. They make me sleep for long hours, much longer than usual, but the it’s the time I’m awake that I dread.

Besides dizziness, for which I have to often keep lying down, there was a weird sensation in the head which I can’t even begin to describe: There’s this feeling of something being wrenched or clawed inside the brain. Some force pulling my head down with an immense strength... simply have to gulp down something for the nausea and collapse into bed. I feel comparatively better in the evening, when the medicine has left the system, I presume.

The course of medication was later changed and I felt somewhat better.

I have tried very hard to connect to other people diagnosed with fibromyalgia so as to try and understand the myriad issues associated with the disorder and its treatment, as well as seek moral support. So far, my efforts have not yielded much results.

One of the many questions to which I seek answers includes if I may have had PTSD, or post-traumatic stress disorder, which perhaps contributed to fibromyalgia. I was witness to my younger brother having a brain stroke at the prime of his life and being disabled for the rest of his life.

I also find myself despairing at the thought if I’m myself on the path to become disabled, in which case I wouldn’t be able to support him, his daughters and my own young son and family. I already find myself trying to hide the dozens of pills I swallow from my two-year-old son’s probing eyes.

I also notice myself turning to a Higher Power to pray even more than earlier. Praying and hoping that I feel better with time, and not worse.

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Published: 06 Jun 2021, 4:30 PM