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Gout

Messages for other people with gout

The people we talked to gave messages and advice for other people with gout, based on their own experiences. These are some of their suggestions:

•    If you think you might have symptoms of gout, go and see your GP. The tests for diagnosing gout are simple.

•    Be optimistic – the treatments for gout can be very effective and enable you to live a normal life. Sort out the best approach for you with your doctor, but bear in mind that there are lots of things that you can learn on the way.
 

Peter thinks it is important to be optimistic about living with gout and ‘learn along the way’. It is possible to manage it and carry on normally with life.

Peter thinks it is important to be optimistic about living with gout and ‘learn along the way’. It is possible to manage it and carry on normally with life.

Age at interview: 63
Sex: Male
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Be completely optimistic. Sort out with your doctor, and with the sort of person you are - who will be very different to me and other people with gout. There’s a lot of different people who will have this – what the best approach is for you, but bearing in mind, you know, that there are lots of things that you can learn along the way about it. But, really, above all be, on average, you can afford to be optimistic and positive - and certainly not feel that - handling it yourself and handling the attacks yourself and carrying on with life is completely plausible.
•    You’re not alone. More than one in a hundred adults in the UK have gout. You might not think gout affects people like you, but remember it does not just affect older men. It can affect women and younger people too. 

•    Don’t believe the myths about gout being due to extravagant living. Most people do not need to make any drastic dietary changes so don’t go over the top with changing your diet.
 

John says gout is easily managed, and most people won’t need to make any major changes to their diet.

John says gout is easily managed, and most people won’t need to make any major changes to their diet.

Age at interview: 43
Sex: Male
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Well there’s not really - for most people there’s not anything to worry about, and it’s very easily managed. And, don’t get too stressed about the aspects of diet, really. You don’t need to make any drastic changes - unless you’ve got a very strange diet. So yeah, just don’t believe in the mythology that it’s all about - must be living life rather extravagantly because most of the time it’s not true. So that would the main advice.

I think the most useful thing is knowing that actually diet doesn’t make that much difference. Because I think if you, if you try and make too many changes that are unnecessary then that’s probably going to be, kind of, the worst side effect really. So I think that, that it actually doesn’t make that much difference. Because, I do like to have a bit of game every now and then, for example.
•    Don’t be ashamed or embarrassed about having gout. You are probably not doing anything to cause it because genetic factors are one of the most common causes.

•    The sooner you get treatment, the easier it will be to live with gout. Be reassured that although attacks are unpredictable, they will end after a few days or weeks. 
 

Eric says it’s reassuring to know that attacks of gout come and go. It’s not a permanent pain.

Eric says it’s reassuring to know that attacks of gout come and go. It’s not a permanent pain.

Age at interview: 87
Sex: Male
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Well the only thing that I could try and reassure them that it does come and go, in my experience, so they don’t have to think, as I did initially, “Oh my”, you know, “I’ve got to suffer this” but it’s not the case, take the medication, cut down on the things you’ve been told and it will improve, it always has, it’s never, it’s never stayed for more than perhaps 10 days, was the longest spell, but 10 days is a long time when you can’t walk.

And you said, you know, obviously it kind of, comes and goes, is that something that it helps you to focus on when you’ve got gout, knowing that it will...?

Yes it is, oh yes, the knowledge that; I’ve never really worried about pains that come and go, it’s pains that arrive and don’t go, 24/7 and you know you’re heading for surgery, that’s when I get worried, but other pains, even arthritis comes and goes, and most people suffer with it anyway, when they’re my age, so you dismiss it.
•    Don’t be afraid of medication. It can be a lot better than having gout.
 

Carole says being diagnosed is not the end of the world. She does not like taking tablets, but now wishes she had started daily preventative medication sooner.

Carole says being diagnosed is not the end of the world. She does not like taking tablets, but now wishes she had started daily preventative medication sooner.

Age at interview: 64
Sex: Female
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What I would say, it's not the end of the world and you can still lead, you know, a fairly normal life. It's a matter of just learning to know when - what, you know, depending upon what, what route you go down. As I say, like me, I left it a long time and got to know, as I say, as time wore on, these instances, you know, "Why is that bit of me hurting? Ha, ha, I know what it is." And that takes a while, I think, sort of to, to understand or to, to get to recognise. But as I say, one, you know, don't be too - don't be offended by, by it. It's not - you've got arthritis, basically. It's just this, this word that people associate with sort of, you know, rotund men and obviously I'm not one of those. As I say, you know, you must do what's best for you, you know, subject to whatever your GP advises. But I've been down both routes, really. I've tried, I've tried the watching what I eat and yes, it worked to a degree. And now I'm taking the medication.

But I suppose, because of the way I am, I am so anti taking things that probably it was a case of me coming round to accepting that I didn't have any other options. But, as I say, it's always easier to be wiser after the event. But if there was anybody, as I say, like me watching, then what I would say is obviously do what you feel best doing, but maybe if you find, as I say, that you're getting frequent attacks, don't perhaps be quite so adamant as I was to just carry on down that sort of, "Oh, I'll watch what I'm eating," because maybe the medication would have been a better option a bit sooner in my, my experience.
•    Don’t give up if you don’t get the right treatment and advice at the start. Be persistent. Ask your GP to refer you to a specialist (rheumatologist) if you are not happy with how your gout is being managed.
 

Jeff says be persistent and tell your doctor what you want to know about treatments.

Jeff says be persistent and tell your doctor what you want to know about treatments.

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Go to the doctor and, and don’t take no for an answer. Say that you want to, you want to find out what dose is required, and what drug is required. In retrospect I should have done that, but I was younger and, and it’s the least of your worries really.
•    Be aware that preventative treatments should be taken every day for life to keep uric acid levels low. You might need a higher dose of allopurinol to reduce your uric acid levels enough.

•    Take the potential long-term effects of gout seriously. Don’t just treat your attacks. Think about taking daily medication to avoid getting joint damage and long-term problems and to prevent attacks. Ask your doctor about preventative treatments if they have not been discussed with you.
 

Harry says try and get used to the idea that gout is unlikely to go away permanently, and that it may get worse. Ongoing treatment can prevent any long-term damage or problems.

Harry says try and get used to the idea that gout is unlikely to go away permanently, and that it may get worse. Ongoing treatment can prevent any long-term damage or problems.

Age at interview: 78
Sex: Male
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Reconcile yourself to the fact that it's unlikely to go away. And get onto medication to get rid of the acid before it starts to do any sort of damage to your joints. That…in a way the pain that you get at the time I think is perhaps, although painful, is secondary to the effect that it's going to have - the permanent damage it's likely to do to your joints, because once you’ve got rid of the gout, chances are that your joints will still be affected by it. It's like arthritis isn't it? It's - the sooner you can get it treated, the less likelihood there is that you're going to have any permanent damage to your joints. And it's - it's well documented where the - where you're going to be - have joint problems, I think they can almost draw a roadmap now of the progress of gout, where it's going to go from A to B, to C, to D, and so on. Yeah, go and see your GP and get treated as soon as you can.
•    Get as much information as you can. Good quality research can provide helpful information about treatment options. 

•    Know that there are doctors and specialists who know what you’re going through and want to help.
 

Gerald says living with gout might be difficult, but there are people out there who want to help.

Gerald says living with gout might be difficult, but there are people out there who want to help.

Age at interview: 67
Sex: Male
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Best of luck to you, but I don’t know. I just, hang on, hang on in there because there is people out there who aren’t going to laugh at you, think it’s a joke and that’s not being sarky, not being funny. And there is people, doctors, specialist people out there who do know what you’re going through and do want, and want and want to help you. And they do help you. So it’s going to be a hard, it’s going to be a hard drive for you, a hard ride for you, but in the end there’s people there, if you get the right people, who will help you and who will put themselves out for you and they do. They do put themselves out.
•    Talk openly about your feelings about gout so that people know about any pain or difficulties you‘re having. Get in touch with other people who have gout because they will understand what it’s like.

•    Ask your doctor or chemist about how and when to take your medication if you are not sure.

People also offered many practical tips to make living with gout easier (for more see ‘Practical tips for gout’).


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Last reviewed December 2016
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