Tony X

Age at interview: 71

Brief Outline: Tony’s first attack of gout was in his big toe joint. His second attack occurred five years later following an episode of food poisoning, and lasted for several months. Tony then started taking allopurinol, and has not had an attack for 20 years.

Background: Tony lives with his wife and has two children. He is now retired, and previously worked as a secondary school Headteacher. Ethnic background/nationality: White English.

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About 20 years ago, Tony’s toe became so painful and tender that he could not put his shoe on. He thought he must have broken his toe, so he went to the casualty department at the hospital. A consultant told him that he had not broken his toe, but needed to visit his GP because he had gout. Tony was shocked because he did not expect to have gout, and did not associate it with people of his age, or with his type of lifestyle. He did not know of anyone else who had been diagnosed with gout. Tony’s GP told him that he did not want to prescribe medication for him to take for the rest of his life unnecessarily, given that it could be a one-off attack of gout. Tony agreed to wait and see what happened. The attack lasted for a few days, but then the symptoms disappeared.
 
Five years later, Tony got severe food poisoning which resulted in a serious blood disorder. At the same time, he developed gout in both of his feet. He could not walk unaided and had to use crutches or sticks. The pressure of bedclothes on his foot was sometimes unbearable. Tony’s pain was the worst he had ever had, and he also found its unpredictable nature difficult to deal with. He remembers suffering for several months. Tony found the experience scary because he had gone from being very fit and mobile, to having severe pain and finding it difficult to live his life in the way he was accustomed to.
 
Gout affected Tony’s leisure and work activities. His most vivid memory of gout affecting what he wanted to do was during a holiday in the Cotswolds when he and his wife had planned to go walking. Tony was determined to try, but found it extremely difficult getting a boot on his foot, and then could hardly walk. The pain also limited his ability to walk around the secondary school where he was Headteacher. He felt that not being able to do what he wanted, combined with the pain, made him ‘irritable’ and ‘bad tempered’.
 
When Tony’s attack of gout subsided, his GP prescribed allopurionol. However, Tony’s toe joints remained very swollen, making it uncomfortable for him to wear shoes or boots. Tony’s GP recommended minor surgery to resolve the issue. The crystals surrounding Tony’s joints were scraped away, and the procedure was effective in making his shoes fit better.
 
Tony has now been taking allopurionol for 20 years and has not had a recurrence of gout in that period. He takes 300mg every day. Tony sometimes wonders whether he still needs to be taking allopurinol, but would not want to run the risk of getting another attack of gout if he stopped taking it. He feels happy to continue taking the tablets because he has not experienced any side effects. 

Tony discussed diet with his GP. He did not make any changes because he was unsure how effective they would be. He did not want to spend time worrying about what he could eat.

When the GP was talking to me about the medication, I mean, he did say an alternative to the medication is to try to manage the thing through diet and that kind of thing. But he said two things about that. One was that the, that there isn’t clear agreement, anyway, so you might spend your time barking up the wrong tree, anyway. And, secondly, he was saying to me, “I don’t think you’d want to be bothered with that kind of thing, to be honest”, and I think he was right - that I wouldn’t want to spend my life having to worry about what I could eat and what I could drink, or whatever, beyond what’s ordinarily sensible.

Tony X found his second attack scary because it affected his mobility and lifestyle so much.

Well, the first time, with the single episode, there wasn’t anything particularly that, that was important. I mean, I didn’t like it, but, but the doctor had said, “I think it will subside. It will go away. It may never occur again”, and so I wasn’t in any sense worried about that, because I saw it as a, a temporary thing and not a permanent debilitating condition, which is what proved to be the case. But when I then had protracted gout, on the later occasion, that was quite scary, because I was turned from being a very mobile, and very fit person in into a, a virtual invalid with severe pain, severe difficulty in moving about in living an ordinary, sort of, life. 

And what do you think was most scary about that for you?

The thought of not being able to live the life that I was accustomed to, plus the idea, I think, of living with pain of that intensity. Yeah, I mean, I don’t recall, but I’m sure I must have been taking painkillers of some kind, but the pain is quite the most awful pain I’ve come across. I mean, it’s worse than toothache or earache or - and things of that kind. It’s very hard to describe to people what it’s like. And some of it is the - my recollection is that some of it is the unpredictable nature of it - that it isn’t a continuing pain or a regular pain, but that suddenly it can affect you in a very intense sort of way. And that I found - that unpredictability, I found that threatening.

Tony X found the pain was unpredictable. It would suddenly become very intense without warning. He could even feel pain if something was near his foot but not actually touching it.

So when you say it’s so much unlike anything else, is that in terms of the pain or in terms of...?

It’s a number of things. One, I think, is in terms of the sheer intensity of the pain, but particularly, as well, the unpredictability of, of the pain, and the – it’s very hard, I think, to understand the notion that something approaching your foot can hurt. So that bedclothes don’t have to touch your foot, even, but being near can cause – well, it certainly feels as if it causes the pain – and that, that’s very odd. That’s not like anything else, I think. And the contrast between the apparent slightness of the, as it were, of the provocation, and the intensity of the experienced pain, I think, is part of what makes it very difficult for other people, who see, that, you know, what you’re talking about is either a feather tickling your toe, and you’re making a huge fuss about it. My – when my father was very old, he was suffering from gout. I don’t think it was ever diagnosed, but he was. And he was terrified at anybody coming anywhere near his foot. So he would shout at people when they got within about a yard of, of his foot, but, I understood why, because it is – somebody brushing past your foot, when your joints are inflamed, is acutely painful, and that’s a strange, strange experience.