Back in 1990, a few months shy of her 18th birthday, Rashmi TK experienced agonising pain in her shoulders. Soon it turned into body pain all over and instead of making her feel better, medications made it worse. She could hardly sit for more than 15 minutes, lift a spoon to her mouth when eating or towel her hair after her bath.
Though she consulted several doctors and tried various treatments, it was 15 years later, in 2006, that she first heard of the term fibromyalgia. Based in Mumbai at the time, Rashmi consulted Dr Pratik Maniar, a homoeopath, to find a solution for the excruciating pain she had been experiencing.
On hearing the diagnosis Rashmi remembers bursting into tears – not entirely ones of sorrow. ‘It was heartening to know that what I was suffering from had a name, and it was not a figment of my imagination,’ says the 47-year-old Indian expat.
In simple terms, fibromyalgia is a condition of widespread pain in the absence of other explanations for pain such as arthritis or injury. ‘It is caused due to an imbalance of neurotransmitters in the body and so is a condition of disordered perception. For instance, even normal or light pressure is perceived as pain,’ says Dr Humeira Badsha, consultant rheumatologist at the Humeira Badsha Medical Center in Dubai.
According to a survey conducted in 2018, the prevalence of fibromyalgia among the general population of Dubai is 1.36 per cent. But for those affected, it can be a living nightmare. It is a common conundrum for patients to think they are imagining their pain, as fibromaylagia is an ‘invisible’ illness. More often than not, they find it difficult to convince those around them of the real struggles of dealing with this pain.
According to Dr Humeira this is because the cause is poorly understood. The symptoms are mostly pain, tenderness to touch, burning, tingling and sometimes numbness. Associated issues include migraines, gastrointestinal symptoms, difficulty in concentration (brain fog), depression and fatigue. Since none of these are mutually exclusive, it is hard to diagnose fibromyalgia from any of these.
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‘Patients frequently experience a delay in diagnosis or are wrongly diagnosed of arthritis or are told nothing is wrong with them. Sometimes they are told they are faking their symptoms. This is because fibromyalgia has no blood test and cannot be diagnosed by X-rays or an MRI. It needs a careful history and physical test and exclusion by blood tests of other conditions that can mimic this condition, such as Lupus, Sjogren’s, inflammatory arthritis, or hypothyroidism,’ she says.
British expat Nicola Mundie, 49, contracted bacterial pneumonia four years ago and was put into an induced coma. ‘When I woke up there were many things wrong with me – Barrett’s esophagus disease, phytobezoar (trapped mass in the gastrointestinal system), severe stomach pain, diarrhoea, vomiting, nausea and constant widespread pain especially in my shoulders, neck, elbows, hand, arms and soles of my feet. My brain was also fuzzy (which I later came to know is called fibrofog)’. A proper diagnosis of fibromyalgia came only when she moved to Dubai two years later and met Dr Ahmad Al Khayer, a pain management specialist at NMC Royal in Khalifa city.
‘There are predisposing factors such as genetics, infections, injuries and stress that lead to a neuro-chemical imbalance and cause fibromyalgia. A common feature is lack of sleep or even what we call non restorative sleep, where a person can sleep even eight hours, but wake up feeling [tired],’ says Dr Humeira. There is no cure but it can be treated with the right approach; well managed with a combination of right diet, exercise, and supplements. ‘Medications to improve quality of sleep and also to correct the neurochemical imbalance will be helpful,’ she says.
Indian expat Sreebala Srinivas, 39, struggled for over a year before she was diagnosed. ‘I had severe pain all over my body, extreme tiredness and lack of sleep. Just holding my hand used to hurt. Everything felt more painful than it would ideally be for other people. Sleep was always disturbed because tossing and turning was a Herculean task. I would wake up feeling like I had been on a battlefield – tired and sore.’
As she couldn’t lift her arms and legs, changing clothes was a struggle. ‘So the easy way out was to just to stay at home! I cancelled plans, withdrew from people. Sometimes I felt like a broken record, playing the same story of agony and pain over and over again. After a point, my husband also wasn’t sure if this was all a fabrication of my mind since no doctor was able to really diagnose anything.’
For Sreebala, getting a proper diagnosis, even if it was fibromyalgia, was a relief. ‘It was proof that I wasn’t imagining all of this after all,’ she says.
Fibromyalgia is not a recent condition that’s on the rise, but rather improved awareness is leading to better diagnosis and more cases being identified. ‘Ninety per cent of those affected are women,’ says Dr Humeira. ‘Certain hormone states or imbalances predispose to this condition. For instance many women may develop it after childbirth, around menopause or experience exacerbations before their period. A wide range of women from different age groups are affected – right from teenagers to women just past menopause.’
Some doctors term fibromyalgia as the ‘UFOs of medicine’ as most cases involve many medically unexplained symptoms. But what it entails for patients is a life of constant suffering, sudden flares and confusion due to brain fog. Among these are also sacrifices in activities, career and a social life.
Sreebala used to be a budding actress with 10 short films under her belt. Since the fibromyalgia attack, she has had to let go of a lot of work opportunities. ‘I used to do MCing but had to turn down opportunities because I wasn’t confident enough to stand for long hours due to the fatigue and pain.’ She also turned down an offer to host a television series because it meant having to travel to India for five days every month.
‘I had a golden chance at a theatrical production, but backed off as it needed 50 days of continuous rigorous practice. It was far beyond what I or my body could take. And not to mention the number of gatherings, parties that I have missed. Friends and family that misunderstood are no less either,’ she says.
Nicola knows that feeling only too well. She used to be a social butterfly who drove a sports car, travelled frequently and helped out at voluntary organisations. ‘I haven’t left the house alone in five years as I get overwhelmed, faint and have panic attacks.’
She and her husband used to eat out at least once a week. ‘We haven’t had an evening out in seven years. We never know which food is going to make me sick. Also I really can’t go to a restaurant in my slippers because I can’t get shoes on my feet. Sometimes I cry in bed thinking of the life I have lost,’ she says.
After the stark realisation that all the pain ‘was not just in their heads’ these women are now faced with the gargantuan task of how to manage it and move on in life.
Rashmi, who was pursuing her undergraduate degree when she began experiencing the bouts, says her professors hardly saw her at college. ‘How was I to sit for three-hour lectures or hold the heavy book?’ she asks.
They worked out an arrangement where her mother would read out chapters for her. She took her exams swallowing painkillers every half hour and blanking her mind to the pain. These efforts paid off and she graduated top of her class.
‘Realising they needed to break the cycle of pain, my parents stepped in encouraging – even threatening – me to become mentally strong. They were clear that they wanted their daughter to be financially and emotionally independent so that she could afford medications and treatments. That jolted me out of a self-pity phase,’ she says.
She went on to do her MBA, live away from her parents, pursue a competitive course and work in a job that entailed travel. ‘When I met my future husband, I took him to meet my doctor before he met my parents. I wanted him to be aware of what he was getting into.’ Despite medical warnings, she conceived and has a son.
It was after she moved to Dubai in September 2014, and was flipping through a edition of Friday magazine, when an article caught her eye – Understanding Fibromyalgia by Abi Jackson. ‘Reading it was like reading my story in print. Here was someone saying that I am not mad and there are people like me,’ she recollects.
She consulted Dr Humeira ‘who explained the need for medications and suggested I join a yoga class for arthritis patients. She heard out my litany of complaints every time, did not laugh at me, did not talk down to me and at the same time did not make me feel like a victim. Her point was, "Yes, you have Fibro, now let us deal with it." And that is still her outlook!’ says Rashmi.
Lifestyle is key
Dr Humeira says exercises such as walking, swimming and yoga are essential. ‘In a small percentage of patients, gluten-free diets are helpful. We also make sure patients are taking high doses of vitamin D, B complex and magnesium supplements. Improving sleep quality is important and there are medications that can help this. Massage and acupuncture is useful.
‘I especially feel ayurvedic massage therapies, which use a combination of medicated oils, heat and deep tissue massage, can be helpful. Also, physiotherapists who employ techniques of deep tissue massage can help this condition,’ she says.
Sreebala’s disease has been in remission for over six months now and she feels ‘a lot more human’ than ever before. What helped her was regular minimal exercise – moving the body without taxing it is essential.
‘Regular slow strolls have helped me immensely. Connecting with nature, taking a breath of fresh air whenever possible became a catalyst to healing. My lifestyle has changed immensely. I am more aware of my energy, and how and where to invest it.’
She is also into daily meditation, practising mindfulness. Another aspect is mindful eating. ‘I ensure I have salads and fruits regularly. I try not to use products with a lot of chemicals; mostly paraben-free products. I go easy on my skin with mostly gentle and homemade and natural/herbal products. Skin and hair is affected by the condition and also by the medicines. So I use a lot of homemade hair masks to retain whatever little is left on the scalp,’ she says.
Rashmi dropped sugar and gluten from her diet, joined an arthritis support group and exercises four days a week. She went for physiotherapy to Dr Fran Curtis, who used Neuro Structural Integration Technique (NST).
‘As I lay on her treatment table she spoke about the power of acceptance, the art of pacing, the ability of the brain to cope. She suggested books and websites and would grill me on what I had gleaned from the readings. I learned about phantom pain and how the brain can manage chronic pain. I changed the way I looked at my medications. Instead of swallowing them like they were punishment, I made a little ritual of swallowing them with gratitude.’
Over the years, she also reinvented her career multiple times. ‘I qualified as a master coach practitioner and hypnotherapist in 2018 and am working on a self-coaching programme for chronic pain patients. I would be glad to help anyone. Ironically, I advise two prominent doctors on managing their fibromyalgia. Both are male. I don’t claim to know everything about fibro, but managing it needs a holistic approach.’
Looking forward to celebrating the 30th anniversary of being detected with fibromyalgia next year, she still has not given up hopes for a cure.
Sreebala’s learning curve came when she stopped seeing herself as a patient. ‘It’s a condition, probably a difficult one but it doesn’t have to define you. If you train your mind to walk ahead of your body, it will follow into a healthy space. Do whatever it takes to keep the mind happy. Read biographies and inspirational stories of people who have survived challenges. I believe everyone receives challenges for a reason, to look within and reroute their journey. Fall in love with your journey, however it is. As (Persian poet) Rumi said "If we are irritated by every rub, how will we be polished?’"