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Rheumatoid Arthritis

Self-management of rheumatoid arthritis

The people we talked to described how they managed their illness and how they coped with pain, tiredness and limitations  (see 'Ongoing Symptoms').

Some people altered the dose of their own prescribed medication to meet their needs. For example, one woman said that her specialist let her alter the dose of steroid that she was taking whenever necessary and another increased it to cope with a holiday (see 'Steroid tablets, injections and intravenous pulses'). However, a few people felt that they didn't have much choice in medication and would have liked to have been more involved in these decisions.

 

Increased her steroids whilst on holiday to cope with the pain.

Increased her steroids whilst on holiday to cope with the pain.

Age at interview: 70
Sex: Female
Age at diagnosis: 58
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I try and get in as much exciting travelling as possible because you never know, you know, next year one might be disabled. And one has to pace that anyway a bit. As I say, when I went to Pompeii and other areas last autumn I was aware I was pushing it but in effect it just affected my blood pressure but it didn't, the joints were fine. Which continue to be fine. I, I upped the cortisone a bit, just the ordinary everyday and it carried it perfectly well.

So while you were out there you just chose to, to increase the dose yourself?

Not very much. I mean it was never more than about 6 mils which was not very high but not mils, milligrams, yeah. But because I had licence to do that and that sort of took the edge off the pain. But it was, it was, it was obviously stressful or the wretched blood pressure wouldn't have come in I think.

Several people mentioned that they altered their painkillers according to their level of pain and according to what they had to do that day. For example, a 42 year old man said that if he had something important to do at work he would take extra pain killers to help him get through the day (see 'Painkillers'). He also said that he used splints when necessary to prevent further damage to his joints.

 

He wears various splints when necessary, depending on what he is doing.

He wears various splints when necessary, depending on what he is doing.

Age at interview: 42
Sex: Male
Age at diagnosis: 17
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The splints that I, I wear, I've got a number of different types of splints for sort of different activities or different things, how I use them really as and when I have to use them. I don't like to use the, the things if I can. If I can get away with using a proper hand and you know to doing it myself then I'll do it.

But sometimes you need to just take that little bit of precaution and safety, on the joints and splints do give you that sort of stability there and I've, you know, again, depending on what I'm doing, I'll think about whether I think it's worthwhile wearing a splint just to you know, give me that added protection, rather do that than twist a joint or something like that and know that I'm gonna be suffering with that problem for you know a considerable amount of time. So they're very good. They're very approachable. 

You say you got different ones for different things, what..?

Yeah, I've got a thumb splint. I had a lot of problems with the thumb and in the end they fused the joint together to give me a, a more stable sort of joint that I can actually now grip things better. I've got to, say a thumb splint that fits purely on that, that gives it a little bit of support, it's sometimes does tend to ache and things like that. I've got wrist splints.

Again when the wrist, the wrist does tend to ache at times and I've also got other ones that go further up the arm that give me a lot more support when I'm perhaps carry things and distributing the stress and strains elsewhere up your arms sort of things, so depending on what I'm doing, I've got something that I can wear that is comfortable and suitable perhaps for what I'm doing. So, yeah, you know, a man of many splints really. 

A few said when they were in pain they had learnt to distract themselves by doing things with the children or by watching television or by talking to friends. One woman said that working for an Open University degree had 'kept her going'. Another suggested that it was important to have something to look forward to, such as a trip to the theatre or a weekend away.

 

Really enjoys studying although her hands do affect her handwriting, but has found using a voice...

Really enjoys studying although her hands do affect her handwriting, but has found using a voice...

Age at interview: 70
Sex: Female
Age at diagnosis: 58
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But it did seem to me if you, at least my brain, it would have been so much worse if I'd had something that was affecting my brain. So I'm more worried about that going funny, hence the open university degree I decided to do. I did another degree in another subject a little while ago, but that was a, a degree at a university and that was slightly impeded by my well current rheumatoid and osteo rheumatoid troubles at the time but I managed that was fine, that worked very well really I could spread it over two years and it was fine. Because it was a further degree. So, I am sort of addicted to learning, I think probably, it keeps one going. 

And the other inconveniencing thing is my hands. I cannot grasp anything. I can't write for more than say, seven minutes without it hurting quite a lot. My handwriting which was always, not very good  is now worse. It becomes a scrawl after a few, I can do it neatly for a few minutes and then it becomes a scrawl. But I have been very lucky because I am doing an Open University degree and the Open University has given me a voice computer, which makes an enormous difference, which is wonderful. Because you know I can type, I have always used a word processor or a computer, but it, it gets very tiring, I cannot do that either, I used to think well I can do that if I can't write but actually it's again I can't do it for more than about ten minutes it's just my wrists have, they don't look too bad, but they have gone pretty well now.

 

Staying positive and planning something nice to look forward to, such as a weekend away, helps...

Staying positive and planning something nice to look forward to, such as a weekend away, helps...

Age at interview: 53
Sex: Female
Age at diagnosis: 30
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I always try and have something in the pipeline to look forward to like a trip to the theatre or a weekend away or something every, you know, two or three months because I think that staying as positive as you can and as happy as you can helps. 

So if you've got nice things to look forward to then it's something that is it, it's just a nice thing that you know is, is there waiting in a couple of weeks time or whatever. I'm a very positive person I'm a, I'm a glass half full rather than a half empty person. And I'm also very determined so I work very hard and I find that very absorbing and very fulfilling and so that can actually take my mind off things when I am in a lot of pain. 

I, when I come home when I've been, you know, when I've done 8 or 9, 9 hours on the trot, I will just come home and I'll put my feet up and watch telly or whatever. And say to myself, 'Well even although I am supposed to have done this by tomorrow morning, sod it, I've done 9 hours, I can't do any more' and although having said that my husband does sometimes come into the office at midnight and, and say, 'Will you turn that computer off?' 

So apart from that I don't know. Just staying positive really. And I feel, I do feel lucky because, I don't feel lucky that I've got the disease but, you know, when I see sometimes, you know, there's always somebody worse than you. When you see other people you think, 'Well,' you know, 'there but for the grace of God'. So and I, I enjoy my life in spite of the disease I, I enjoy it.

Some people said that the disease made them feel very tired. One woman said, 'I have to stay at my own pace,' and 'take each day as it comes.' Another said that on some days she had to tell people to leave her alone and not to telephone because she had to rest. Others took longer afternoon naps, or went to bed early.

Many people stressed that it was important to slow down, to work fewer hours and to restrict social activities to some extent. However, one woman said that she liked to keep busy, even if she worked less hours, because activity stopped her dwelling on the situation. Others found gentle exercise such as swimming very helpful (see 'Exercise'). People described how they had changed their lives in other ways to cope with disability. One man allowed more time to get up in the morning and then set himself tasks to do each day so that he didn't become a 'lifeless lump'. Others said that they had learnt to sit down at parties and not to dance for too long. An elderly woman stood at the communion rail instead of kneeling.

 

Suggests that people must learn to change, perhaps work fewer hours or give up work if necessary...

Suggests that people must learn to change, perhaps work fewer hours or give up work if necessary...

Age at interview: 40
Sex: Female
Age at diagnosis: 2
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I do think it's, with arthritis, it is good to be busy, because if you're off or you're not working or even if you don't work you do voluntary work because it gets you into society and stops you dwelling on how you feel and what's affecting you and I've enjoyed, I did initially, I was very upset when I got, had to finish with my employers on medical grounds, I had to retire quite early and I though 'oh my God this is awful' and then took part time work and actually enjoyed part time work because I had time to work and time to be off, so I was quite happy about that, although I wasn't at the time. You've got to learn to change, perhaps change your working patterns, work less hours, not work at all, work voluntary, but I don't think it's a good idea to sit around the house all day long. For me it isn't.

 

He sets himself goals each day because he doesn't want to become a 'lifeless lump'.

He sets himself goals each day because he doesn't want to become a 'lifeless lump'.

Age at interview: 76
Sex: Male
Age at diagnosis: 74
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Apart from the, the joints thing, its this inertia to overcome to make sure you, you set a programme record because that's what this course I went on was all about was setting a daily programme. In fact we used to set them out and you say now what are you gonna set out to do this week and you say, some people would say, well I'm gonna walk around the block each day.

And I would say 'Well I'm gonna put a block in the middle of the con, in the patio, a concrete block and walk round that' and it seemed silly things or I'd say, 'I'm going to offer to pour the sherry today' and well it's just nonsense. But, no, but the thing is that they, they, the thing is to set, encouraging you to set tasks to do, so that it becomes more commonplace that you would do these things. 

Otherwise you just sit and rot and gravitate to a situation where you, you become a life, lifeless lump. Again it's not something that I don't think the medics are always totally appreciative of, not all of them obviously. But I think it's a message that err, well perhaps that's why all the other good things are there, the other, like the courses are there for this very reason. That's why I emphasise from my own experience for people who've got, to take part in all these things to try and go out and there and seek this sort of help. As I say it's good to talk to people, in a group, it's group therapy really that's what it is and you need that, otherwise you just become a cabbage. 

Many people spoke at length about ways in which they had adapted their homes to make life easier. They had altered kitchens and bathrooms in particular, and had bought special equipment to help with everyday living. They also talked about how they shopped and looked after the garden (see 'Personal life and changes to the home'). People altered their lives in many other ways to cope with inflamed joints and flare ups. Many people asked family and friends to help with chores (see 'Sources of support').

Last reviewed August 2016.

Last updated September 2010.

 

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