Gout

Everyday life with gout

Overall impact

Although attacks had a huge impact on the everyday lives of many people, a few people felt that gout had not affected their lives at all. Some felt this way because they could quickly recognise and treat attacks and were able to reduce the impact on their day-to-day life. Gerald has frequent, severe attacks. He felt that he had a ‘totally different life’ before gout because it has affected him so much. In contrast, Tony Y felt that gout was not a major part of his life. 

Jonathan’s rheumatologist reassured him that gout could be treated so that it did not affect his lifestyle. Jonathan was pleased to find that taking preventative medication achieved this.

Jonathan’s rheumatologist reassured him that gout could be treated so that it did not affect his lifestyle. Jonathan was pleased to find that taking preventative medication achieved this.

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The rheumatologist was fantastic. He was absolutely brilliant. He was able to tell me what is – well, explain what was going on, what I might expect. Yeah, and map out what the, the different options might be in different scenarios. So if I got frequent attacks, that we consider going on, you know, using allopurinol. It actually made it real in that he was, you know, I suppose, just coincidentally, was able to say that he had, you know, had gout himself, reassured me that I shouldn’t, you know, take grave concern about it. That it was manageable. That it needn’t affect my lifestyle, you know, irrevocably.

Allopurinol has been really good, so no attacks whatsoever. It hasn’t, at the moment meant that gout’s impacting on my, my lifestyle, at all. So I generally don’t have to watch what I drink. I don’t consider trigger foods. I know, you know, I’ve got my theory about what people do, in relation to gout, and lots of people, initially, when diagnosed, look at trigger foods. ‘Is it my diet? Is it this, is it that?’ and try and change all those things. Find no difference, and they’ve ended up on allopurinol or, or equivalent, anyway. So, yeah, it doesn’t change what I do at the moment.
Many people felt that gout was ‘disabling’ and they had to ‘sit and wait’ for the pain to go before they could get back to normal life. People who had frequent attacks sometimes felt that having gout impacted on them all the time because they were thinking about it even when they did not have an attack. Others felt that it only affected them for short periods of time during attacks. 

Joe felt that he had to put his life ‘on hold’ each time he had an attack.

Joe felt that he had to put his life ‘on hold’ each time he had an attack.

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When you’ve got it, well you don’t really, you just - it’s a case of you go to bed, then you get up, get on the settee or something with your leg up or in a, same as I say, in a bowl (of ice), just try and get the, get it calmed down a bit, and that’s basically it, you know, it’s so, for how long you’ve got it, for me, when I was working especially, it’s a, you know, your life’s on hold.

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

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

Age at interview: 71
Sex: Male
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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.
Hazel felt that other people did not understand the impact that gout could have on virtually all aspects people’s lives. She believed that, because it is not a life-threatening condition, people often minimised how serious and debilitating it could be. 

Chores and activities

People had different problems depending on where their attacks were. Picking up a knife and fork was painful for Arthur when he had an attack in his hand. Jill found it difficult to make the bed. Alan tried to keep going during attacks but said it took him much longer to do things like hanging out the washing. Many people found it difficult to get to the toilet if they had attacks in their feet, ankles or knees. On one occasion, Carole could not get out of the bath.

Jill sometimes finds it difficult to get money or cards out of her purse when she is shopping.

Jill sometimes finds it difficult to get money or cards out of her purse when she is shopping.

Age at interview: 53
Sex: Female
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Going to get some money out of your purse, simple, simple, everyday things that you and I take for granted, and no one would probably associate with gout, it's like - sometimes I feel silly when I'm at the cash out, at a supermarket, because I'm trying to get my money out of my purse, but because of the pinching movements we make, I can't do it. And, you know, the girl's sat waiting and then you’ve got customers behind you and I'm like, “It isn't intentional, it hurts for me to pay”.

And how do you feel at that point when…?

Very - well when I'm at the - when I'm in the - it only happened yesterday, in the supermarket, and people are queuing up and they're huffing and puffing, and I'm trying to get my money out plus my card, because I always keep a card in the back of my purse which means I've got to poke my finger down, us girls know what it's like, and get this card out, so that's number one, that's like, thank goodness that’s there, but then if it's like down to pennies or pounds I like to try and pay them. But it's the pinching movement and actually holding the coin, you would not believe it. It's all quite difficult and people do not know do they, they don’t see that, so what they see is somebody being very fumbly and not very quick at the till. It's not good, I don’t like gout. It affects me in a lot of ways, it takes me off my feet, that's for sure.
Long-term joint damage made some common tasks challenging for a few people. Harry found it difficult to get the tops off plastic milk containers because he could not grip them easily. 

Thoughts, feelings and mood

Many people we spoke to talked about gout affecting their mood or how they felt. The pain, combined with the restrictions it had on their activities, made people feel ‘miserable’, ‘unhappy’, ‘short-tempered’, ‘grumpy’, ‘irritable’, ‘angry’ and ‘frustrated’. Gout sometimes made Eddie feel ‘downhearted’, ‘lethargic’ and ‘demoralised’ because it limited his activities and social life so much. Jill, and others, found that the pain made them tearful or weepy. One person felt that having gout was ‘frightening’ because of the debilitating impact it could have.

During an attack, Arthur finds it frustrating that he feels fine until he stands and puts pressure on his joint.

During an attack, Arthur finds it frustrating that he feels fine until he stands and puts pressure on his joint.

Age at interview: 63
Sex: Male
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I’m reasonably fit, and what frustrates me, is because it’s so painful and you literally can’t do anything, I get frustrated with that, because I feel fine. I can be sat with my foot up, no pain whatsoever, I feel fine. Then I stand up and “ooh”, you know, and I get frustrated with that and I think to myself, “Why, what can I do to improve this situation?” So yeah, I do, I use the word annoyed. I get annoyed with myself as to why I’m in this situation when really I feel, I feel as fit as a fiddle but I’m not and it’s not until, as I say, you go to move or somebody and think, God Almighty, you know, so yeah I do get frustrated and annoyed. 

Can you try to describe at all what the pain is like?

[Laughter] Well some people say it’s worse than childbirth, no I don’t know, it’s difficult. When I get it in the knees because [my wife] said to me several times, “What’s it like?” And I said, “It’s like somebody getting a knife, and driving it through the joint.” It is that painful, I don’t know how to sort of describe the intensity of the pain but it is extremely painful, and of course the bigger the joint, to me, if I get it in my knees it’s far more painful than when I’ve got it in my little finger, although that is painful but, you know, that’s what I find. 
Some people thought about gout every day and wondered when they would get their next attack. Others did not think about it at all because their daily treatment prevented them from having attacks. Joe still worried about getting another attack even though he had not had one for several years. For Eddie, ‘it’s always there in the back of your mind’. Several people worried that they might be doing or eating something that would trigger an attack. A few people worried about getting symptoms if they ran out of their daily preventative tablets (e.g. allopurinol) or forgot to take one.

After adjusting to the diagnosis, Jonathan feels that he is now back to ‘life as normal’.

After adjusting to the diagnosis, Jonathan feels that he is now back to ‘life as normal’.

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It’s just life as normal. So I just take some pills every day. I don’t have gout attacks. It doesn’t really bother me. So, that’s – yeah, it’s different to, you know, if you reflect back on the process you go through when you’re first diagnosed, “Oh, my God, what’s going on? What are the implications? What can I, you know, is it something that I’m doing, in terms of lifestyle, which is affecting this? Can I change that?” So that, that’s different, because you were, you were adjusting to it. And then I actually realised, you know, probably I’ve got to go on allopurinol anyway, and I can lead – I can go back to, to normal again, instead of worrying about, you know, not eating calves liver or things like that, which I love calves liver, so... [Laughter].
Once he was not getting attacks, Harry realised how unwell he had been with gout in the past. People he had not seen for a while commented on how much better he was looking. A few people felt grateful that gout was a condition that only affected them occasionally. 

Some people felt embarrassed about having gout, though others were more bothered by the fact that it is often seen as something that only affects older people, or men. Alan thought that some people might to be afraid to be diagnosed with gout because of their perceptions about the condition. People also felt annoyed about other people making jokes about gout because, as Harry said, ‘It’s funny for everybody except the person that’s hobbling around’ (see ‘Historical perceptions and myths about gout’).

Sue thinks that many people see gout as a joke without realising how painful it is.

Sue thinks that many people see gout as a joke without realising how painful it is.

Age at interview: 68
Sex: Female
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Sue: A lot of people see it as a joke, without realising the implications of the pain, the pain and torture really that you go through with it. It still is the Dr Johnson type of attitude when you have these swollen limbs and bandages and, you know, it’s too much Port, too much Claret etc. Most people have very little understanding of gout and the way it can affect somebody’s body because we’re quite lucky in the fact that it doesn’t affect us that much, but I worked; I had one or two clients when I was working for Social Services who had gout in every single joint, which was red and swollen and for a lot of people, they got very little understanding so it does become a stereotype jokey, “Oh you’ve got gout ha ha ha ha” type of approach, so there tends to be a lot more understanding, particularly I think if you’ve got families who don’t understand it.
Some people did not feel embarrassed about having gout but felt embarrassed by the impact it had on their physical activity. Alan sometimes felt slightly embarrassed because he was limping and could not help other people in the ways he would usually. Eddie found it embarrassing when he was with friends and struggled to walk to the toilet because of an attack in his knee.

Kate does not feel embarrassed about gout. She thinks it is ‘just another thing’.

Kate does not feel embarrassed about gout. She thinks it is ‘just another thing’.

Age at interview: 65
Sex: Female
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It doesn’t bother me in the slightest. Nothing. No, no. I suffered from depression on and off, have done for over 40 years. And to me, if you got a broken leg you would get it fixed. If you’re depressed get it fixed. So why am I going to get bothered about gout. No, it’s just another thing, no. That’s the way I feel about things. 
Sleep

The severe pain of attacks prevented many people from sleeping well, or at all. Sam felt that not sleeping well had a negative impact on her mood as well as making the pain feel worse. People found it difficult to get comfortable in bed – particularly because they could not bear to have a bed sheet touching their joint. Joe tried sleeping with his leg sticking out of the bed. Other people arranged pillows or other items either side of their joint to stop the covers touching it. Some people found it harder to cope with the pain when they were in bed because they had nothing else to do.

Val found it difficult to sleep during an attack. She could not bear the duvet touching her foot. Turning over also caused pain.

Val found it difficult to sleep during an attack. She could not bear the duvet touching her foot. Turning over also caused pain.

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Well you can’t sleep with it. It’s absolutely terrible. Like the duvet, it doesn’t matter how light it is, you feel that you want one of those cradle things over your foot. You just can’t bear touching. And even turning over in bed, the pain was so bad like brushing against the sheet it was so bad, it was really quite a bad pain.
Some people found sitting or sleeping in a chair more comfortable. They often tried reading or watching television to distract them from the pain. A few people moved out of the bedroom to avoid disturbing other family members who were trying to sleep. Others could not physically get to bed during an attack.

When Eddie had attacks in his knees he could hardly walk. At one point he had to sleep in a chair for three days because he could not get into bed.

When Eddie had attacks in his knees he could hardly walk. At one point he had to sleep in a chair for three days because he could not get into bed.

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It was mostly in my foot, and you can get by, but when you get it in your hands like this and you can’t hold anything you know even a cup of tea when it’s in both hands, it’s very difficult. And the worst is in your knees, I never had it in my knees at work or anything like that but when I’ve had it at home, I’ve had two attacks in my knees, and it’s got to a stage where you can hardly walk, you can just about get to the toilet, but I couldn’t lift my legs to get into bed, so I slept in a chair for three days, until the time came that it started to go I could get into bed, but that was the worst attacks, yeah very bad attacks. 

John found it better to sleep sitting up. He found it hard to eat and drink.

John found it better to sleep sitting up. He found it hard to eat and drink.

Age at interview: 57
Sex: Male
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I did sleep in the sitting room, sitting up. I found that the best. I had cushions under my arms and I was just sitting there. The worst of it is you can’t drink because you can’t bring – once things start easing you can move a little bit, but you can’t get a cup up to you. No, that’s it. Driving was a problem, and I just got on with it. I just got on with it – I had to get on with it. When I first had it, it wasn’t as severe. Now I wouldn’t be able to drive at all - I couldn’t get out of bed. That’s why I don’t go to bed. 

So were there things that it stopped you doing then?

Well, it stops you driving, stops you – I would say, Yes, it would stop you doing your full day’s work, because you’ve won’t put up with that all day. Psychologically you won’t, you want to do things to ease pain problems. Yeah, it does definitely. Yeah, gout would stop me walking. If you get it in the shoulders and the arms, phew, my friend had to cut my food up a couple of – quite a few days, so that I could eat. 




Last reviewed December 2016

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