Experience I am in constant pain

Photograph of anonymous interviewee
‘I have to accept I will be in pain every day of my life.’ Photograph: Karen Robinson for the Guardian

I was watching television when the pain started. At first it was a distant ache in my ankles and legs, but within minutes it had spread to my hips and pelvis. I was a keen runner and had recently had a sports injury, so I put it down to that. But after just 45 minutes, the pain intensified and went to my head, jaw, neck, shoulders, back, arms and hands. I thought I was dying. That was two years ago, and I haven’t had a day without pain since.

The day after it started, I was at the GP’s surgery. I could barely stand up, and he was baffled. He asked if I had been in an accident. I told him that I had fallen down the stairs at home a few weeks earlier, but that I had seen a doctor at the time who found no broken bones. My GP could not see any reason for me to be in so much pain. He gave me painkillers and told me to come back if things didn’t get better.

They got worse. Just putting my foot on the floor caused excruciating pain to shoot through my legs. A couple of days later, I found myself in A&E, having my feet taped with bandages to ease the pain caused by a short walk to the shops.

A week or two after that, I was back, this time with severe pain in my abdomen, sensitivity to light and sound, and an overwhelming fatigue. I would fall asleep mid-conversation; I was so worried.

My GP arranged numerous tests to try to find out what was wrong, but it took six months from my first appointment with him to get a diagnosis from a specialist. What I have, he said, is fibromyalgia, a disease I had never heard of. He explained that symptoms occur spontaneously, that it can be a genetic condition, or can follow physical trauma and affects the connective tissue of the body, causing pain in the muscles, ligaments and tendons. Symptoms vary in severity from person to person, and can affect one in 20 people in the UK. My GP couldn’t say exactly why I have it.

The consultant found that I had 18 “pain points” – areas that trigger pain that then moves around the body. The slightest touch can prompt it. A gentle hug from a friend, a light pat on the back or someone bumping into me can make me howl. Taking a shower feels like being stabbed with a thousand needles.

The hardest thing was being told there was no cure. Before this disease, I lived in a world in which there was always a solution. I worked in communications for more than 20 years. I fixed problems all day at work, and at home, but three months after being diagnosed, aged 47, I could no longer work. I had to give up my career, and now, for the first time in my life, I have to rely on my partner financially.

I struggle with the fact that I don’t look sick, and my friends and family don’t understand what is wrong. People ask when I’m going to feel better, and what I do all day. They don’t understand that just getting through the day is hard enough. Most of my time is spent in bed or the bath, where the hot water gives me slight relief. Everyday life is unpredictable. On my best days I think that maybe I can work again, but some days all I can hope is that I will get to the local shop.

I am fortunate to have a partner who is understanding. It is as difficult for him as it is for me, but he helps me try to take pleasure in the smaller things, like reading or watching a film. But there is rarely any respite. They say your health is the most important thing in life. Until now, I didn’t really appreciate what that meant.

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