From diazepam to diagnosis: how I finally found an answer to chronic pain

    16 September 2016

    Seven years ago I was trapped in a very deep black hole. I was in constant pain, had stopped working full-time and had given up hope of finding relief.

    The pain had started at university, after a particularly strenuous boxercise class. During the session I felt a sharp stab in my lower back. It disappeared pretty quickly but over the following few weeks was replaced by a dull, persistent ache.

    Over time the pain morphed, snaking around my back. Sometimes it was in my lumbar region, other times in my shoulders and neck. I went to my GP, was referred to a physiotherapist and prescribed a host of anti-inflammatories and painkillers.

    The doctors I saw during those first few months weren’t concerned. I was young and fit. I’d never had any serious health issues. Back pain is also notoriously common. In the eyes of my doctors, I was almost certainly just another patient experiencing temporary discomfort.

    Except I wasn’t. I had a condition called ankylosing spondylitis (AS), a form of arthritis that causes inflammation of the spinal joints, leading to severe chronic pain and, in the worst cases, fusion of the vertebrae. AS can also cause pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes — and, more rarely, the heart and lungs — are affected.

    There is no cure for AS and the exact cause is unknown, though genetics plays a key role. Most people with AS have a gene known as HLA-B27. Symptoms typically start occurring in early adulthood, and are more common in men.

    The road to my diagnosis was long and horribly bumpy. After the initial round of painkillers and physiotherapy failed to help, I was referred for an MRI, which revealed that one of my lower discs was partially herniated.

    At last, I thought. An answer.

    But the prolapse wasn’t serious enough for surgery. So it was back to the physio. More, stronger painkillers were added to my daily routine, along with diazepam to help with my broken sleep.

    Then came the referred pain — sciatica striking through my buttocks and down my legs. Sitting became uncomfortable. Walking and running were difficult. Socialising became strained; nights out with friends cut short as I retreated home to the temporary relief of a blisteringly hot water bottle.

    I fell into depression. More pills.

    I had a series of steroid injections, and an epidural, which helped keep the pain at bay for short periods. I saw a pain therapist but struggled with the experience. Being asked to rate my pain out of ten was infuriating. Ten, I would think. It’s always ten!

    Coincidentally, I was working as a journalist at the time, and was tasked with writing a column exploring alternative health therapies. I tried everything, from reiki and reflexology to cranial osteopathy and the Alexander Technique. Deep tissue massage sent me home in tears. Acupuncture was agony.

    I even went to a shaman, operating out of her Muswell Hill home but trained in the arts of Native American healing. She guided me through a meditation, inviting me into my medicine wheel and introducing me to my spirit animals. My coyote was dirty and frightened — an apt representation of my emotional and physical state.

    And then, finally, a breakthrough. After six years spent negotiating the frustrating maze of NHS departments and disbelieving doctors, I was referred to a rheumatologist. I remember thinking: ‘This is my last try.’

    My best friend, a doctor, emailed me some research about a drug called Humira, effective in treating AS. She urged me to ask about it, coaching me to advocate for myself, to demand to be tested for the disease.

    And so I went to the appointment, armed with documents, prepared to fight my cause.

    The consultant listened to my case and then told me, calmly, that, yes, he thought I probably had AS. He sent me for an MRI and put me on a trial for Humira — a biologic medication which works by blocking TNF, the protein which leads to inflammation. The drug had to be injected once every two weeks. A friendly man from the drug company came to my house and showed me how to administer the injections.

    The pain eased almost overnight. It was unbelievable. I can’t describe the relief. My life had been fundamentally altered by years of chronic pain. My friends and family had tried to help, but couldn’t. I was isolated. In the darkest moments I contemplated suicide.

    I’ve been taking Humira for seven years now and am almost completely pain-free. I have occasional flare ups, which are terrifying, but am pretty much able to do anything I want. I exercise, I ride horses, I lift weights. I can work, though I have to be careful about sitting at a desk for long periods of time.

    I don’t know what will happen in the future and can’t bear to read too much about the long-term effectiveness of Humira. Mostly, I prefer not to think about my disease. I want to keep it shut in a little box — there, but not really there.

    Even writing this article was a big decision. It forced me to re-live experiences I wanted to forget.

    But it also threw up some sunnier memories.

    After cutting down my work to part-time hours I started volunteering at Battersea Dogs & Cats Home two days a week, trying to stay distracted. Those few hours spent on the floor of a smelly cat pen, stroking anxious strays, were the highlight of my week. Pain is very self-involving; looking after distressed animals forced me to focus on something else, something utterly demanding of my attention. It was amazing. I also met other volunteers — weird, wonderful people I would never have socialised with in my ordinary life.

    If I had to describe my experience, I’d compare it to being a little ball in a pinball machine — pinging endlessly back and forth between different doctors and remedies until finally, suddenly, hitting the right target. If I were to give advice to anyone living with chronic pain, I’d say — don’t give up, hang on through the pinging. One day you’ll hit your target.