When I heard this week that Kirsty Young had stepped down from presenting Radio 4’s Desert Island Discs after being diagnosed with fibromyalgia, I knew only too well the pain she was feeling. Even now, thinking about the crippling exhaustion I experienced at the start of my journey with the condition 13 years ago makes me want to cry and leaves me shaking and feeling deeply unhappy.
In 2005, I was all set for a career in international relations. I was a normal, energetic 20-something, full of enthusiasm and brimming with excitement for the next stages of life. I had graduated from Brown University in the USA and spent the summer in Cyprus on a course focused on Middle East Peace for students who wanted to go into a career in foreign policy and diplomacy. I was looking forward to moving back home to London to start my first job.
I remember that trip to the doctor as if it was yesterday…
“There is no such thing as fibromyalgia ” a doctor told me, looking over my notes. “You are absolutely fine.”
There it was, his assessment. I was a 23-year-old hypochondriac, I was a fake: faking the total exhaustion, the continual pain, the inability to read or even watch TV without my brain turning to mush.
Maybe he was right, I thought. Maybe there was nothing wrong with me. Maybe I had been imagining it all.
I had started to develop chronic headaches, the kind that completely eliminates your ability to function. The headaches were followed by a pain in my back, which clung to my spine like a clamp. I went to see my GP who sent me for a barrage of tests.
Over the next two weeks, the pain in my back started to rescind, but it was replaced by crippling exhaustion. I was sleeping 20 hours a day and would wake up feeling exhausted. I would make it to the kitchen and feel so tired it was an effort even to think about climbing those two flights of stairs to get back to bed. I remember lying in bed one afternoon thinking, “I am hungry and I need the bathroom,” but knowing I only had the energy to just about make it to the bathroom. My brain function was at its lowest point; watching television or reading a book weren't options at all. Leaving the house was out of the question. Thank goodness for my family who I was living with, especially my mother who looked after me as though I was a young child again.
A month later, the test results came back. Officially, there was nothing wrong with me. I was told I was ‘burned out’ and if I just ‘rested’ I would slowly get better. When I asked how long it would take, the not-so-reassuring answer came back: “how long is a piece of string?” I had worked hard to graduate from college, at the same time balancing a busy social and extracurricular schedule. The doctor's analysis seemed to make sense and I left his office thinking this is what must be happening.
Around this time, a family friend – a doctor – came to stay. He watched me for a few days and asked if he could examine me. He said what I had was no burnout.
A week later, I was on a plane to the Mayo Clinic in the United States, which is known as one of the top diagnostic hospitals in the world. Four days later, I was given my diagnosis: Chronic Fatigue Syndrome (CFS), Postural Tachycardia Syndrome (PoTS) and fibromyalgia.
CFS is pretty much what it sounds like, constant tiredness. Also known as ‘M.E.’, other symptoms include headaches and sleeping problems.
PoTS is a little-known condition, which causes your heart rate to increase dramatically by simple actions such as standing up. This can lead to all sorts of other symptoms too – lightheadedness and blurred vision. It’s often misdiagnosed; I recently read an article which said that people saw on average seven different doctors before being correctly diagnosed. Years later, when reading about a popular new blogger Deliciously Ella , I realised that this was the same condition that she had had, so thanks to her, this one is easier to explain!
And then there was the fibromyalgia. This causes (among other symptoms) exhaustion, brain fog and severe pain all over the body. Mine was so bad, especially around my ribs, I couldn’t even bear to hug anyone. The easiest way to describe how it feels is like a hangover mixed with the flu.
To say the diagnosis came as a relief is an understatement. Not only did it reveal what was wrong, but it also confirmed there actually was something wrong. I wasn’t going crazy.
Back in London, I was put on medication for PoTS, which helped regulate my blood pressure. A physiotherapist helped me to strengthen my body after all those months in bed and a nutritionist helped me replenish all the nutrients I needed. Like many other sufferers of conditions that cannot be cured by pharmaceuticals, I started experimenting with different healing methods, including acupuncture, craniosacral therapy and many more. Getting better became my full-time job.
I managed to find alternative treatments to beat the CFS. The one that really worked for me was called the Lightning Process , which takes a lot of influence from Neuro-Linguistic Programming.
My PoTS was controlled through the meds, which I stopped taking after about 18 months.
While CFS and POTs were conditions that the medical world agreed existed, fibromyalgia, on the other hand, was at the time still a controversial diagnosis - hence the aforementioned doctor’s appointment. For years, I saw doctors or people in the health professions who dismissed fibromyalgia as some sort of made-up term to placate a neurotic. I’ve had to explain – and justify – my condition, time and again, to strangers and friends. I look healthy and when people see me out and at meetings, I am full of energy. What they don’t see is me during a flare-up. “Fibro what?” is such a familiar refrain to so many sufferers. However, in the last few years, there has been a shift as fibromyalgia becomes a lot more mainstream.
Awareness is growing in part, thanks to Lady Gaga, whose Netflix documentary, Gaga: Five Foot Two, depicted her struggle with the condition (such were her symptoms, she had to cancel her 2017 European tour) and Kirsty Young’s announcement last week of her diagnosis.
There’s still a long way to go, but this type of exposure helps to make fibromyalgia more widely recognised.
What is fibromyalgia?
Officially recognised as a medical condition in the 1970s, almost 50 years on, it is still not fully understood. There are no known causes and there is no official ‘fibromyalgia test’ such as a blood test or scan to prove you have it.
Doctors instead rely on a cluster of symptoms to make a diagnosis. When I was diagnosed back in 2005, there were 18 pain points, and if you had 11 of them then you would be diagnosed with fibromyalgia. But because the pain is not consistently in the same location, medical professionals now diagnose fibromyalgia as a widespread pain for more than three months, exhaustion and no other underlying condition that might be causing all the symptoms.
It feels like rheumatic disorder but it does not cause inflammation or damage joints. The Mayo Clinic explains that “fibromyalgia appears to be linked to changes in how the brain and spinal cord process pain signals.”
For some people, the symptoms can be pretty much continuous but for others, like me, they come in flare-ups.
I can have weeks and sometimes months where I have no flare up. But then a flare up happens where I am back in bed with pain everywhere, feeling exhausted and my brain literally not functioning. I will write one email and feel wiped out. This can last a day or a week, there isn’t a clear pattern.
Worst of all, there is no specific cure.