Life in my body... with fibromyalgia i
Dayna, a journalist from Edinburgh, 27, struggled for years with this invisible illness
’m lying down on the cold floor of the toilets at work, using my jacket as a pillow. I’m not recovering from the world’s worst hangover – I had 12 hours’ sleep last night. This is what life looks like when you have fibromyalgia.
I was 22 when, overnight, everything changed. I’d woken up unable to sit upright. My joints ached more than the day after a hardcore workout – it felt like someone was pushing an ice pick through each of them one by one.
I rushed to hospital where every test came back clear, and for the next year I was in and out of my doctor’s like a yo-yo, taking tests and ever-stronger painkillers. Over time, I became forgetful and would stare at my computer screen unable to type. My brain felt exhausted before it’d even begun thinking.
My sleep pattern shifted too – I’d have a long sleep at night, a nap at work, a two-hour sleep when I got home, then go to bed early. It got so bad that full-time work became almost impossible. Colleagues noticed as I’d take another dose of strong medication or vanish for an hour to sleep in the toilets. My absences became more frequent and management didn’t understand my invisible illness. I fell behind on work and had to quit my job. More and more people began to doubt that I was struggling at all – one boss even said, “Are you sure it’s not all in your head?”
After two years of symptoms, I was given an official fibromyalgia diagnosis. Fibromyalgia is a chronic condition that causes pain all over the body and extreme fatigue. Side effects include muscle stiffness, trouble concentrating and sensitivity to light. There’s no test that instantly diagnoses it and lots of the symptoms are found in other illnesses – I had X-rays to check I hadn’t hurt myself, and a scan to check for MS.
There’s no definitive answer as to why a person gets fibromyalgia and treating it is trial and error. After four years with the condition, I’ve finally been referred to an NHS specialist who’s helping me to train myself out of sleeping so much by taking regular rests each day. For the pain, I do yoga, go to physio and take lots of Epsom-salt baths.
As for work, I’m now a freelance journalist, so I don’t have to stick to a 9-5 routine that my body can’t keep up with.
I refuse to call anyone with a chronic condition a “sufferer” – we’re the most resilient people you’ll ever meet.