Arthur

Age at interview: 63

Brief Outline: Arthur gets attacks of gout in his hands, feet, knees and ankles, and takes Naproxen to manage them. His first attack was about 30 years ago, and he has had four attacks in the last 12 months.

Background: Arthur lives with his wife. He has one child who is married. Arthur is now retired, and previously worked as a Police Officer. Ethnic background/nationality: White English.

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Arthur was in his early 30s when he woke up one morning with pain in his foot. His big toe joint was swollen and he did not know what the problem was, but he waited for a few days to see if it resolved itself. His foot remained swollen and painful so he went to his local A&E department. He had an x-ray which did not show anything unusual, and then one of the doctors suggested that the symptoms might be due to an insect bite. He was prescribed some drawing paste and told to return if the symptoms persisted. The swelling and pain did not improve, so Arthur went back to A&E, where a staff nurse suggested that he might have gout, and recommended that he went to see his GP.
 
Arthur visited his GP who diagnosed him with gout, and did a blood test that showed that his uric acid levels were high. Arthur was surprised at the diagnosis because he was not aware of anyone in his family with gout. He found it difficult to believe that he could have gout. Arthur’s GP prescribed indometacin, and gradually the pain and swelling went away. The GP also prescribed allopurinol tablets that he recommended Arthur to take for the rest of his life. Arthur did not think that his GP gave him much information, and because his diagnosis was before internet access was possible, he found it difficult to find out information himself at that time.
 
Arthur began taking allopurinol, but still continued to get attacks of gout. Arthur does not like taking tablets, so when they did not seem to be stopping him from having attacks of gout, he decided to stop taking them.
 
Arthur has a friend living nearby who also has gout. Arthur was having problems with the indometacin he took to manage his attacks of gout. It made him feel sick and very tired, and he had to go to bed when he took it. Arthur found out that his friend was taking naproxen. Arthur went back to his GP and asked if he could try naproxen during his attacks. His GP prescribed it for him, and Arthur has experienced no problems with it.
 
Arthur finds it frustrating that people treat gout as a joke because the attacks are so painful and debilitating for people who have gout. He has talked to family members to explain what gout is and the impact that it has on him.

Arthur found it embarrassing to tell people at work that he had gout, and believes that there is stigma associated with the condition due to the misconceptions that people hold about it. When Arthur has an attack, he tries to walk normally despite the pain, in order to hide the physical symptoms from other people. Physical fitness was an important part of Arthur’s job, and attacks of gout meant that he could not wear the necessary footwear or take part in any physical tasks or training. He found it frustrating that he was not able to fulfil his role, and that other people would have to cover his workload. When he was a Sergeant, more of his duties were desk based which made it easier to cope with them during an attack of gout.
 
Arthur often feels frustrated and annoyed with himself during an attack because he cannot do things that he wants to. He gets attacks of gout in several joints, including his finger and thumb, his knee and his ankle. The pain he experiences is worst when it affects his knees, and feels like someone is driving a knife into his joint. He has found having a big pair of slippers and a walking stick useful when he has attacks in his knees and feet. He will often get a second attack of gout in a different joint, just as the first attack is finishing. Arthur has also noticed that he seems to get attacks when he has a cold.
 
Arthur is now retired, but gout attacks impact on his leisure and social activities. His attacks have meant that Arthur and his wife have had to cancel, change or delay social and/or travel arrangements. Arthur feels that his wife is particularly understanding and supportive, and he believes that his life would be very difficult during attacks if he was living alone. They have worked together to try and identify things that might be causing the attacks, and his wife has done a lot of research on the internet. Looking at information on the internet helped Arthur to realise how many other people had gout. He had previously felt alone in having the condition.
 
Arthur has been trying to work out for the last 30 years what is causing his gout. Initially, he thought that when he cut down the amount of alcohol he was drinking, his gout attacks would stop. However, he now drinks much less alcohol and still gets the attacks. Arthur has tried eliminating various foods from his diet. He also tried taking cherry extract tablets, but did not find that anything made a difference to the frequency of his attacks. Arthur developed psoriasis a few years before he started getting attacks of gout, and wonders if, in his case, there was a link between stress and both of these conditions.
 
It has become more important to Arthur to try and identify the cause(s) of his gout as he has grown older, particularly because he has a lot more that he wants to do in his life. He would like to get his gout under control so that it no longer impacts on his social life or ability to go travelling with his wife. He has had four attacks in the last 12 months. 
 

Arthur found big or open toe footwear best during an attack. He also used a walking stick.

I’m wearing these ones [Laughter] because they’re soft but it’s cold but yeah, things like a big pair of slippers. I know it might sound silly, but when you’ve got it in your feet you don’t want leather that’s constricting on the joints and whatnot, you want something that’s supple and that you can wear more comfortably. Crocks are a good example, they’re a good thing too, open shoes, flip flops are good things so that’s the sort of thing that you need to look at just so you’ve got something on your feet so you can get about. And also a walking stick, I know that sounds stupid and of course you tend to think about old people with walking sticks and whatnot but certainly my walking stick has been a life saver for me when I’ve had it, and particularly when I get it in the knees. 

Arthur tried eating lots of cherries but found that they did not reduce his attacks.

And have you tried any sort of alternative or complementary therapies or anything like that?

Now then, cherries, I don’t know if this is really going to answer your question but, I suffered quite badly, when I was in Australia I suffered quite badly with it, whether that was heat related I don’t know, but cherries seem to be something that people were taking and cherry extract, and you can get from herbal shops cherry, you know, tablets based on those kind of fruits and whatnot. I took those for a while to see if those would help at all, but they didn’t - bit of a lost cause really.

Arthur stopped taking allopurinol because he was expecting it to stop his attacks quickly. He recently found out that it can take some time before attacks stop.

I was put on this course of allopurinol, I can’t even remember what the size of the dosage was, but it didn’t seem to resolve the problem. I still got attacks of gout and I said to myself, “What is the point?”, because I’m not particularly good at taking tablets and I said, “What is the point of taking tablets if it’s not curing the problem?”, because it doesn’t cure it, but nobody in the medical world sat me down and said, right Arthur, this is what allopurinol will do for you, or won’t do for you. You’re sort of left in limbo to find out yourself. Now it wasn’t again until recently… so all these years I haven’t taken it, I’ve tried to manage my gout attacks without actually taking any medication apart from when I’ve got an attack and I take a tablet for the inflammation to get that down…

I’ve since found out that in actual fact some doctors said when you take the allopurinol it will bring on an attack of gout. Okay, the advice I then had was conflicting because some doctors then said, “Right, when you have an attack of gout, stop taking the allopurinol, take the anti-inflammatory, get it back under control, go back onto the allopurinol”. Now other doctors have said, “No, keep taking the allopurinol, take the anti-inflammatory and keep going” so there was a conflict. So you think to yourself, what do I do? What do I do? So I made the decision that I’d stop taking the allopurinol and, as I say, I did some research just before I contacted you, and I read that the allopurinol or the drug, whatever allopurinol is, actually takes about 12 months to build up and be effective, so you’ve got something like a 12 month running period before it will actually show any results. Now nobody has ever said that to me, no doctor, nobody said, “Look, this is a long term solution, you got to stick with it”. So of course through lack of advice, I’m trying to sort of do, not do my own medication but sort it out myself. 

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

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. 

Getting older has made Arthur more determined to get his gout controlled so that it does not impact his leisure and social activities.

I’m probably more anxious now to try and identify what the problem is, because as I’m getting older, you’ve got less time. Now I don’t…we’ve got a lot we want to pack into our lives, okay. We want to do a lot more travelling. Our social life, you know, we’ve got a lot we want to do. Now I know at the back of my mind, that if I get an attack, that’s knocked on the head, so that impacts quite severely on what we want to achieve. So the long term prospect for me is, that I want to get it sorted because what time I’ve got left in my lifespan, I don’t want to be messing about with gout and trying to sort that out because I’ve got other things I want to do, so it’s a bit frustrating.

Arthur used to try and walk normally to hide the fact that he was in pain. He did not want to explain to people that he had gout.

I try to hide the fact that I’ve got it. I will try to walk normally. I might be in excruciating pain, but because I regard myself as being fairly fit, when I’ve got it I tend to feel embarrassed that people might be looking at me and think, “Oh what’s the matter with him?” That’s not the problem, it’s when they say, “What’s the matter with you” and you say, “I’ve got gout”, you know, there’s stigma to it. It seems to roll onto the sort of how it looks and socially is it accept… not acceptable but how do other people, going back to some of those questions you asked earlier about how do people regard you and whatnot, there is a stigma to it without a doubt.

Arthur finds it easier to manage attacks when he is at home. His attacks have affected his plans and activities when he has been away on holiday.

Obviously if I get an attack at home, it’s easier because everything’s here and all I’ve got to do is get up to bed or get to the loo or whatever, you know. There have been times where I’ve had attacks, for example, we’ve done a lot of travelling since I’ve retired from the police, we done a lot of travelling and we were in Vietnam and I had an attack there which laid me up for a week, so all our travel arrangements for that week had to be put on hold. And then once the, and of course it doesn’t just clear up like that. The pain in a joint remains, I mean I can have it for weeks afterwards and the weakness in the joints, so all those arrangements have to be put back, you know, and that causes you sort of problems with your social life, travelling life and all the rest of it, just through an attack of gout.

Arthur believed that it was important to ‘educate’ his family about gout so that they understood it better.

I think most people are, like family, there’s a lot of ignorance about gout and most people don’t understand what it’s about. If you talk about a serious illness like cancer, just as an instance, most people when you mention that know sort of the implications that that has. When you talk about gout, most people haven’t got a clue as to what it is, and the impact it’s having on you, and I found that obviously with family. It’s not until you sit down and talk to them about it and say, “Right, this is what I’m going through at the moment” or they come round and your knee’s swollen or your foot’s swollen and they say, “God, what’s the matter with you?” “It’s gout, this is what it does”. That’s the sort of impact. It’s more of me educating them as to what the problem is because they don’t know, as I said, what gout is all about.

Arthur found that colleagues did not understand why he needed time off during an attack. He believed that gout was seen as a joke.

I mean work and what not, when you put, when I rang up and said I’m off sick. “Oh what you got?” “Gout”. “Gout?” You know, “I mean well why can’t you come in?”. “Because I can’t get my shoe on, because I can’t stand up, because I can’t walk” or whatever it is and there’s a general ignorance. I mean if you say to somebody a more common disease, I can’t think of one, they may be more understanding. You know, “Oh I’ve got back pain and I can’t move” or something like that. “Oh fine, okay”. But when you talk about gout, certainly when I was in work, in the job, that’s how it was regarded, it’s a bit of a joke really, “You’re malingering and all the rest of it?” “No I can’t, I literally can’t walk”. 

The internet has been Arthur’s most useful resource. He was reassured to find out how many other people were also affected by gout.

Well, thankfully we’ve got the internet. If we hadn’t have got the internet then I think my lack of knowledge, or my level or knowledge would be virtually the same as what it was 30 years ago, because where do you go to find out these things? But because of the internet now there’s a wealth of information, although it hasn’t resolved the problem, one of the things it brought home to me was how big a problem it is, and growing, because you tend to think that there’s only you in the world, whole wide world, that’s suffering with this particular problem and why you sort of thing. By looking at the net obviously you can see that it, that’s not the case, so the internet is our greatest source of information, and I still check it on a fairly regular basis to see if there’s anything new, but it’s all pretty much, seems to have reached a, not a limit, but it seems to have reached a point where most of the information is the same at the present time. Whether sort of research that you’re doing is going to, you know, increase our knowledge or whatever it is you’re trying to achieve, I don’t know but the internet is the place for us, that’s where we’ve been. 

Arthur wonders why people think that gout only affects wealthy people when it can actually affect anyone.

We mentioned earlier about gout being associated with rich men and things like that. What are your thoughts about the fact that gout is often referred to in that way?

It would be interesting to know why that came about. I mean because I’m sure that people of all walks of life have suffered with gout and why it should be identified with people in a higher sort of structure if you like. I don’t really know, I don’t know how that’s developed because that’s complete ignorance, because it’s obviously not true, everybody from whatever walk of…I suppose people in other countries, I suppose it’s a worldwide problem, so it’s just, it’s interesting when you do mention gout because they automatically think you’re loaded [Laughter] which I’m not, but so it’s just a bit frustrating, not frustrating but it’s comical when it’s linked to, you know, being wealthy or royalty or whatever.