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21.10.2014

Living with chronic fatigue syndrome a personal story of the struggle for recovery, chronic fatigue syndrome tinnitus - Review

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Haine pictured at home in Dubai with her husband Stuart, her son Tasker and her daughter Tabitha, having regained her health. 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. 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.
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. The programme was launched in 2009 by Annie Hopper, a counsellor and psychotherapist from Toronto, after she recovered from multiple chemical sensitivity (MCS). The limbic system is a complex set of structures in the brain that’s largely responsible for how we interpret sensory input. Hopper teaches sufferers to self-­direct positive changes in the structure and function of the brain through a series of repetitious neuroplasticity-based exercises. To start my recovery, Dr Khan prescribed medication to reduce inflammation, boost my immunity and ease pain.
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. 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. Dr Khan says up to 15 per cent of the patients that she sees in the UAE suffer from CFS or fibromyalgia.


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.
When I completed the programme in April this year, I became the first person in the UAE to do so. 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. 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. It features seminars hosted by Hopper, along with expert excerpts explaining the thinking behind the programme’s steps. At the end of the DVD programme, Hopper asks for a six-month commitment to repeat the DNRS steps for an hour a day.
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.
While the cause of both conditions is not fully understood, a popular theory is that a viral infection is the trigger. 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. 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.
On the first day, towards the end of October 2013, I was too exhausted to sit up to make notes.


There I met Dr Sam Rao, the centre’s founder, who was shocked by my frail appearance.
But there’s no known cure, and, while the average recovery is within two years, some patients remain ill for years.
Effectively, by thinking and acting as a well person, my mind could slowly persuade my brain that I was healthy. I ate and wrote with my left hand, changed my nail polish to unusual colours and drove different routes to work.
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. I now even have a personal trainer who is helping restore me to full physical ­fitness.



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Comments to “Living with chronic fatigue syndrome a personal story of the struggle for recovery”

  1. eee:
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  2. GemliGiz:
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