Tara Davuluri* has been in pain for 30 years now. Her most severe, persistent and enervating pain occurs in her pelvis but she also experiences such bad headaches and facial pain that she wants to clench something between her jaws to make it stop. There are times her neck and the sides of her spine hurt or she has tingling sensations in her hands and feet or pain radiating down her legs or just extreme fatigue in her arms and legs.
Fifty four-year-old Davuluri has been diagnosed with two conditions that explain her pain – fibromyalgia syndrome and chronic myofascial pain.
Fibromyalgia – from the Latin words “fibro” meaning connective tissue, “myo” meaning muscle and “algia” meaning pain – is characterised as widespread chronic muscular pain and believed to be caused by a disorder of the central nervous system that amplifies pain signals to the brain. About two percent of the adult population is thought to have this condition and many more women suffer the syndrome than men. Chronic myofascial pain is a musculoskeletal disorder where a group of muscles stiffen into taut bands called trigger points that hurt when they are pressed.
Fibromyalgia is a difficult disorder to understand and doctors often misdiagnose it. Patients find themselves at a loss to describe it and the people who live and work with them may just never get it. Medical researchers are still investigating whether it has a genetic or environmental cause.
The syndrome is characterised by subjective complaints and does not show up as any physical or biological abnormality. The chronic pain and tenderness of the body is accompanied by a cluster of other symptoms like physical and mental fatigue, sleep disturbances and mental disorders like depression. Pain associated with fibromyalgia has a way of suddenly becoming very severe – debilitating episodes that patients call “flares”.
Davuluri remembers that she was 24 and four months pregnant when she first felt the now-familiar pain in her pelvis. She traces her chronic pain back to the Caesarean section surgery she had a few months later to deliver her son. For ten years she went from neurologist to orthopaedic doctor to gynaecologist. “Each of them would find something: ‘Yes, you have endometriosis. Yes, you have spondylitis and a sacroiliac joint issue,” she recalled. “When I went to a neurologist he did not find any neurological issue.”
With every doctor Davuluri would get a new diagnosis and treatment but no relief from her pain. Then, 10 years later, a physiotherapist told her she might have chronic myofascial syndrome. Three years after that, doctors in the United States diagnosed her with both fibromyalgia and chronic myofascial syndrome.
Davuluri uses various words to describe the pain she feels in different parts of her body and on different days: throbbing, dragging, gnawing, burning, tightening, tingling, hammering, and excruciating.
Davuluri is an agricultural scientist and plant breeder by training and used to work on millet research. However, her pain forced her to quit her job in 1997, about five years after she started working. “All my work was out in the field and it was not like I could rest my muscles,” she said. “I could not travel to my trial sites in Hisar in Haryana and in Punjab. Travel was when the pain became the worst.”
Purvi Aneja* feels bad that her fibromyalgia has affected her parenting. “There are times when I have left my child crying on the floor because I could not lift him,” she said. “I have had to tell my child not to touch me because that can trigger pain. These are the smaller setbacks but there are bigger ones. I have wanted to conceive a second child, which I have not been able to do.”
While Davuluri’s pelvic pain is a near constant reminder of her fibromyalgia, Aneja experiences her disorder as pain, sensitivity and “strange vibrations” in her feet and the palms of her hands.
Difficult to diagnose
Aneja first felt her chronic pain about seven years ago. She met numerous specialists all of whom failed to name her condition.
“I found out that it was fibromyalgia by reading and understanding myself,” said Aneja. “It was a self-diagnosis but I needed a doctor to certify that I had fibromyalgia.”
Two years ago Aneja met a rheumatologist who, within five minutes of talking to her, referred to fibromyalgia. Aneja was relieved that a doctor was finally diagnosing her.
“Fibromyalgia is a diagnosis of exclusion,” said Dr Arun Naik, senior consultant neurosurgeon at Apollo Hospitals in Bengaluru. “You have to make sure that all other organic causes are ruled out.”
Every week, Naik gets at least five patients out of the 400 that he sees who have classical fibromyalgia. But he also sees patients who have been diagnosed with the condition but turn out to be suffering from other conditions entirely. He recalled a patient who actually had a tumor inside his spine. He had nonspecific symptoms, was depressed and had a sleep disorder but after Naik operated to remove the tumor, the patient recovered fully.
“The classification of fibromyalgia is so blurry that if one doctor diagnoses a case as fibromyalgia everybody keeps adding to treatment options on basis of that,” said Naik. A study conducted by pain researchers in Canada shows significant inaccuracy and over-diagnosis and cautions physicians to consider other possibilities when diagnosing diffuse musculoskeletal pain.
At the same time, patients like Davuluri and Aneja have spent years in pain and without treatment because doctors did not look for fibromyalgia while assessing them.
One physiotherapist told Scroll.in that even though he treats people diagnosed with the condition, he does not believe it actually exists. “When doctors can’t find anything else wrong, they just term it fibromyalgia,” he said.
While Davuluri and Aneja went from doctor to doctor in the big cities of Hyderabad and Mumbai, people in rural India have an even lower chance of being diagnosed. A research team from Midnapore Medical College investigating the quality of rheumatology care in rural West Bengal found that out of the 250 patients reporting musculoskeletal pains in the study, 10 had fibromyalgia. All 10 cases had been previously misdiagnosed as osteoarthritis, rheumatoid arthritis or lumbar spondylosis.
Fibromyalgia does not have a cure. The condition is not classified as a progressive disease that gets worse over time, but many patients report worsening of symptoms. Once diagnosed, a patient can only look to manage these symptoms. Davuluri relies on a small constellation of medicines to take as and when she needs them – an antiepileptic drug that also helps with neuropathic pain, a low-dose anti-depressant that helps her sleep, and occasional painkillers and muscle relaxants. Aneja’s doctor has put her on a regimen of medication to suppress nerve signals to the brain, in the hope that, over time, the body recognises its amplified pain response and corrects itself.
But Naik reiterates the endless struggle of those with fibromyalgia. “After the first incidence, it is lifelong,” he said. “They continue to be insomniacs, continue to be in pain and continue to be depressed.”
The isolation
Swagata Majumdar Bhattacharya was a dancer in her teenage years when she started feeling strange pains without knowing what caused them. Her doctors in Dhanbad where she grew up, a town then in Bihar and now in Jharkhand, told her she had rheumatoid arthritis. She remembers getting many injections and a lot of medication till she was 20.
“But I would still always complain of body pain,” she said. Her pain affected her performance in school and forced her to stop dancing. It was only when she was 31 and had moved to Bengaluru that she met a doctor who understood that she had fibromyalgia, a word she had never heard before.
When she was a teenager Bhattacharya’s friends would complain that they could not count on her to go out with them. As an adult, she finds it difficult to find co-workers who can understand the physical pain she deals with. “When you do mention it, people brush it off saying, ‘It’s ok. Everyone has something that they are dealing with,’” she said.
This lack of understanding makes fibromyalgia sufferers feel isolated.
“On the face of it, people understand that there is an issue but they are not able to comprehend that it is continuous and chronic,” said Aneja. “It is difficult for people to comprehend that though everything might seem normal, we are dealing with this somewhere in the background.”
When she was initially diagnosed with fibromyalgia, Davuluri tried to write down some explanatory notes for her family from a book on the disease. “Even then, my mother did not seem to get it,” she said. “My father also may not have understood but he was very cooperative. My sisters were very cooperative. My husband, I thought, was in complete denial and would not read anything I would give him to read either.”
Twenty years later, Davuluri thinks that her mother still does not understand her illness but her husband has recognised his wife’s everyday traumas and helps where he can.
The three women have one thing in common – while they are in near-constant physical pain, they have learnt not to talk about it. Davuluri quit her job without citing any specific reasons.
Aneja fears any talk of fibromyalgia will diminish her professional prospects as an IT sales manager. “I do not discuss my condition in the workplace because it is seen very negatively,” she said.
“I have stopped telling people I am in pain,” said Bhattacharya.
*Names changed on request.
This is the fifth part of a series on forms of pain that are not understood well or are ignored or dismissed as minor health issues. Read the series here.