The road to recovery: a first-hand account of beating chronic fatigue syndrome
I tried to get out of bed, but my joints were locked in pain and I could only roll to one side, landing on the floor face down. There I lay for several minutes as I slowly unfurled my limbs and, eventually, summoning what little strength I had, sat up.
This was my reality last September, shortly after being diagnosed with chronic fatigue syndrome and fibromyalgia. Bedridden with chronic exhaustion and pain, I was unable to work, look after my two children, Tabitha, 7, and Tasker, then 4, and was completely reliant on my husband, Stuart, for care.
Chronic fatigue syndrome (CFS), also referred to as ME (myalgic encephalomyelitis), is a long-term debilitating illness dominated by fatigue, muscular and joint pain, flu-like symptoms, poor concentration and headaches. Fibromyalgia, a similar condition, causes tenderness and pain in the muscles and fibrous areas of the body, with sufferers experiencing a heightened reaction to pain because of subtle changes in the brain and nervous system.
“This can be compared to a ‘volume control’, where a low signal may be amplified by the nervous system and result in increased pain perception,” says Dr Bhavna Khan, a consultant rheumatologist at MediClinic City Hospital Dubai and the medic who diagnosed my illness.
Dr Khan says up to 15 per cent of the patients that she sees in the UAE suffer from CFS or fibromyalgia. While the cause of both conditions is not fully understood, a popular theory is that a viral infection is the trigger. But there’s no known cure, and, while the average recovery is within two years, some patients remain ill for years.
The idea that the life I enjoyed – as a mother and as an editor at The National – would be drastically limited by illness was terrifying. When I joined online support groups, I found patients who had been ill for years, some even in wheelchairs and relying on carers.
Just 10 weeks after the devastating diagnosis, however, I returned to full-time work, and today, 11 months on, I am almost fully recovered. So how did I do it?
I used a combination of treatments, but the most significant was to rewire my brain using the Dynamic Neural Retraining System (DNRS) – a Canadian programme that remaps the brain away from a constant cycle of illness and back to full health over a period of six months. When I completed the programme in April this year, I became the first person in the UAE to do so. I heard about the programme from a close friend in the United Kingdom, an ME sufferer whose health was finally improving after 20 years of illness. I had always relied on conventional medicine, but, by then, I was ready to try anything.
The programme was launched in 2009 by Annie Hopper, a counsellor and psychotherapist from Toronto, after she recovered from multiple chemical sensitivity (MCS). Using her professional experience and the latest research in neuroscience, she concluded that she was suffering from a limbic-system disorder where the brain is locked into a permanent trauma loop (or state of fight or flight), which makes it see everything around it as some form of threat.
The limbic system is a complex set of structures in the brain that’s largely responsible for how we interpret sensory input. Several factors can impair its function, from exposure to chemicals, a virus, an emotional or physical trauma or accumulated stress. Once the system is damaged, it causes cross-wiring of the neuronal circuits in the brain and, as a result, distorted sensory perceptions.
“Intuitively, I knew I was suffering from a brain injury of some kind that was affecting my physical health, my emotional well-being and my thought processes,” explains Hopper.
Her theory made sense to me. My own brain was telling my body that the world was too loud, too bright and too tiring.
But once the limbic system gets caught in this perpetual trauma loop, sufferers struggle to break it. For this, Hopper turned to neuroplasticity, a monumental breakthrough in neuroscience in the last century when scientists realised the brain was not a solid, set structure but plastic – something that could adapt and change.
Hopper teaches sufferers to self-direct positive changes in the structure and function of the brain through a series of repetitious neuroplasticity-based exercises. In short, I needed to think myself well. To do this, I verbally repeated a series of phrases to shift my focus to the past when I was well, reliving healthy memories, and then again to the future, when, again, I would be healthy.
According to the programme, by repeating these exercises for an hour a day, the brain would slowly rewire itself by blocking pathways that were no longer useful to it – such as those sending messages of illness and pain – and instead create new pathways. Effectively, by thinking and acting as a well person, my mind could slowly persuade my brain that I was healthy.
To date, the DNRS programme has only treated 3,000 people – some on courses hosted by Hopper in North America and more than 1,800 through a 14-hour DVD that she created to reach those farther away.
I needed four days to complete the DVD course. It features seminars hosted by Hopper, along with expert excerpts explaining the thinking behind the programme’s steps. On the first day, towards the end of October 2013, I was too exhausted to sit up to make notes. By the second day, I was not only sitting, but standing and even dancing.
With every positive thought and action, I was engaging the frontal cortex of the brain. At the end of the DVD programme, Hopper asks for a six-month commitment to repeat the DNRS steps for an hour a day. She also suggests mixing up your daily routine. I ate and wrote with my left hand, changed my nail polish to unusual colours and drove different routes to work. I also bought a red sofa to change my living room decor.
Slowly, my health improved. Less than a month after starting the six-month course, I returned to full-time work.
But I must be clear, the DNRS wasn’t my only treatment. I’d been unwell since May 2012 with bouts of chronic illness and respite in between. Each illness flare was worse than the last, and my doctor prescribed aggressive antibiotics to treat what was then considered a recurring mycoplasma infection – otherwise known as walking pneumonia. Dr Khan made her diagnosis after months of extensive tests in Dubai and London, after excluding a series of other diseases, from lupus to rheumatoid arthritis, Addison’s disease and even cancer.
To start my recovery, Dr Khan prescribed medication to reduce inflammation, boost my immunity and ease pain. Next, I contacted XY Clinics, a personalised medicine centre on Dubai’s Al Wasl Road that I’d written a story about the previous year. There I met Dr Sam Rao, the centre’s founder, who was shocked by my frail appearance. His medical team prescribed a three-month programme of supplements to boost energy production. I also radically changed my lifestyle, altering my diet and exercise regime. I now even have a personal trainer who is helping restore me to full physical fitness.
The most important step in my recovery was being diagnosed. The next was believing I could get better. There’s no one-stop solution for everybody, but treating both the brain and the physical symptoms was the key to my recovery.
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