I have tried every position five times over, but the searing pain in my big toe won’t go away. I can’t sleep. The pain pulses as if my heart has migrated to my foot, but instead of blood it is pumping razor blades. I have had my fair share of pain over the years. I have broken my back and had impacted wisdom teeth, but I have never felt anything this excruciating.
“How have I done this?” I ask myself over and over. I went to bed with a normal toe; now, it is purple and has doubled in size. I assume I must have knocked it in the night and broken it, so I visit my local hospital, where a nurse takes one look at my bulbous toe and says: “It’s gout.”
Gout! I have gout. What’s next? Bunions, piles, cataracts? I’m 35. I’m too young for this.
Gout is an inflammatory form of arthritis that causes sudden, severe joint pain. Your body makes uric acid when it breaks down purines, which are chemical compounds found in your body and the food you eat. If the kidneys fail to filter enough uric acid from the blood, it eventually crystallises in the joints and can prompt the immune system to hit the emergency button, causing a flare-up.
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I’ll get a flare-up; things will be really painful, particularly at night. Then things will subside and I’ll think everything is on the up and things are getting better. A few days will go by, then it’ll flare up again
A sore toe, it turns out, is a classic symptom of gout. Long seen as the “disease of kings”, because of its association with Henry VIII, gout is considered almost comical: something that affects rich, portly old men. Although there is a link with diet, there is a strong genetic predisposition to the condition.
Until six months ago, Todd Ashley, who is 26, was a fit and healthy software engineer living in Cambridge, Massachusetts. He cycled, climbed and played football; he followed a flexitarian diet, eating mostly vegetarian food unless he was eating out and had limited choices. He was hardly a stereotypical candidate for gout. Then he had his first attack. Now the pain means he struggles even to take Harvey, his miniature poodle, for walks.
Ashley’s gout, like mine, began in the big toe. “It was just a little bit of swelling at first, then a lot of pain at night, to the point where I was elevating my foot with all the pillows I could find in the house. It was excruciating,” he says.
I have had only one significant flare-up since my visit to the hospital in May, plus a month or so of residual twinges in my toe, which I calm by submerging my foot in ice water. Ashley’s experience has been more challenging: “I’ll get a flare-up; things will be really painful, particularly at night. Then things will subside and I’ll think everything is on the up and things are getting better. A few days will go by, then it’ll flare up again.”
Before his first attack Ashley went on a bender at a stag do: “We were drinking pretty heavily and sleeping two or three hours a night and we were fairly dehydrated. So I sort of blame that bachelor party.”
Before my flare-up, my book publisher took me out for a fancy meal and drinks, which I later blamed for my night of agony. However, the condition doesn’t quite work like that.
The need to take lifelong medication is a bitter pill to swallow, but more and more young people face this reality
Eating foods that are high in purines, such as shellfish, red meat and offal, and drinking alcohol can increase the likelihood of a gout attack — more purines means more uric acid, and more uric acid means more painful crystals. But, says Mark Russell, a clinical research fellow at King’s College London, “For most people it’s not something they’ve done; it’s genetically determined. The idea that this is a condition that you’ve done to yourself, or that it’s just down to bad diet, is definitely not true.”
The good news is that gout is treatable. It is possible to lower the level of uric acid in your blood by steering clear of purine-loaded foods, while ibuprofen can be used to manage flare-ups. Russell says the best preventive treatment is medication such as allopurinol, which lowers the level of uric acid in your blood.
The need to take lifelong medication is a bitter pill to swallow, but more and more young people face this reality. In the UK, for example, although most gout patients are still 60 or older, the number of patients aged between 20 and 30 has been increasing.
Why? “Some of that will be due to things like obesity becoming more common,” says Russell. “Other conditions that come under what we call ‘the metabolic syndromes’, including blood pressure and diabetes, have become more common — and they are very strongly associated with gout.” However, he adds that more research into these age groups is needed. Research shows that gout is far more common in men than women, with more than 94 per cent of people in the US with gout being male. Still, young women do get it.
Cassie Place, who is 22 and from Yorkshire, experienced her first episode of gout when she was 19. She was at greater risk than most women of her age because she has Bartter syndrome — a group of rare conditions that affect the kidneys — of which gout is a complication. She had her first flare-up after taking a course of diuretics. “I woke and my big toe felt like it was on fire. It was really red and swollen and I couldn’t walk,” she says. As a delivery driver, she needs to walk, lift and carry. In fact, she still does her job even when in pain. “I just feel like I can’t afford to take time off,” she says.
When I was younger, I used to bite my bottom lip in frustration as I waited for my hobbling grandmother to catch up on our walk around the supermarket. She had arthritis in both knees and her hands. Only now do I feel her pain
While gout has often been seen as a bit of a joke, it is not: it is painful and it shortens life. A 2017 study found that people with the condition are 25 per cent more likely to die prematurely. “I feel like it’s not taken seriously. And the pain that you’re going through, people sort of underestimate it,” Place says.
Is it time we changed the name? Crystalitis, anyone? “I was at a trivia night on Monday and our team name was ‘No Gout About It’, so I don’t take the name too seriously,” says Ashley. “But I do agree that a lot of people I’ve talked to downplay how serious it can be. Versus if I hear somebody say ‘rheumatoid arthritis’, it has a much different reaction.”
One benefit of having a lifelong condition at a premature age is a heightened sense of empathy. When I was younger, I used to bite my bottom lip in frustration as I waited for my hobbling grandmother to catch up on our walk around the supermarket. She had arthritis in both knees and her hands. Only now do I feel her pain.
The alarming thing about gout is that only one-third of people with the condition take preventive medication. So, if you are reading this and are young, fit and healthy and have dismissed an attack of gout as an anomalous blip in an otherwise ailment-free existence, easily remedied by lifestyle changes, think again. If you leave gout untreated, it can become chronic and more painful, spreading to other joints and even leading to kidney failure. Swallow your pride — and your medicine. — Guardian