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Too tired to care

Published on 01 October 2009
Source: Arthritis Today

Professor Sarah Hewlett

Fatigue in rheumatoid arthritis, once ignored by the medical profession, is now something of a hot topic in research circles, with Arthritis Research UK leading the way.

For 30 years Bev Davis has been living with the debilitating effects of rheumatoid arthritis (RA) – and particularly with the intense fatigue that is part of the condition.

"It’s absolutely draining, to the extent that all you want to do is to lie down,” says Bev, now 48. “Even reading is too much. You become mentally and physically blocked, and it’s all you can do to lie on the sofa and watch the telly. It brings you down so much because you can’t plan to do things.”

For Bev the fatigue is worse when her arthritis is in flare, and she has learned over the years to try to pre-empt its onset. “What I try to do is to pace and plan my day, and to allow myself rest periods. I try and conserve energy if I know I’m going to be doing something,” she explains.

Bev, from Portishead, near Bristol, had the worst time of it when her three now grown-up children were young. “Just taking them to school or doing the shopping was exhausting. Now they’re grown up it’s slightly easier to plan my life, but for 20 years just the thought of going out in the evening with friends was impossible. I’d make the tea then flop down on the sofa and that would be it. Fatigue has had a huge impact on my life and on my social life. I’ve talked about it with other people with rheumatoid arthritis and we have a term for when the fatigue is really bad – we call them ‘wipe-out days’ when you simply cannot do what you planned to do.”

Fatigue associated with rheumatiod arthritis is very different to normal tiredness

Up to 90 per cent of people with rheumatoid arthritis experience fatigue, 40 per cent on a daily basis, but until recently, this element of the condition had been largely ignored and insufficiently taken account of by medics.

Both patients and clinicians agree that fatigue associated with rheumatoid arthritis is very different to normal tiredness.

“It’s different in intensity, it’s unpredictable, it’s not earned and it’s unresolvable, appearing to serve no useful purpose,” explains Professor Sarah Hewlett, an expert on fatigue in rheumatoid arthritis, and Arthritis Research UK Professor of Rheumatology Nursing at the University of the West of England in Bristol. “You can’t refresh yourself through rest or sleep. And the consequences of fatigue permeate every sphere of life, with far-reaching effects on physical activities, emotions and relationships.

“We know that fatigue features in most long-term conditions, and rheumatoid arthritis is no different,” adds Professor Hewlett. “However, in multiple sclerosis, for example, patients say their fatigue makes the symptoms worse but in rheumatoid arthritis it’s the other way round, and the rheumatoid arthritis symptoms seem to make the fatigue worse.”

Attitudes are now changing

Attitudes to fatigue are now changing, partly because Arthritis Research UK is is taking it very seriously indeed. At a special workshop convened by the charity last year, experts from a range of related areas met to discuss the need to know more about fatigue in rheumatoid arthritis and as a result a taskforce has been drawn up looking at how it can be dealt with more effectively.

“A recent survey of rheumatology nurses showed that they want to treat fatigue better but the problem is they don’t know how to measure fatigue or how to manage it,” says Professor Hewlett, who is heading the Arthritis Research UK taskforce.”What we are hoping to achieve through the taskforce is to identify and review the evidence for existing types of treatment and management of rheumatoid arthritis fatigue and then summarise the key questions that should be addressed by future research.”

What causes fatigue in rheumatoid arthritis?

One question that is bound to feature prominently is what causes fatigue in rheumatoid arthritis, although the answer is of course more complicated than the question.

It’s likely that a combination of factors is responsible: biochemical, as a result of inflammation and/or anaemia; physiological, due to muscle weakening or poor sleep; and psychological, linked to stress, anxiety, and depression.

“The causes might differ from patient to patient, but also between patients over time, so that one week it could be caused by inflammation, and another week it could be down to your psychological state of mind,” says Sarah Hewlett.

“Some of our research is identifying different types of fatigue which may provide us with some knowledge of the different pathways of fatigue and different predictors. So a short-term predictor might be how active your disease is today, and how well you slept; whilst in the long term, fatigue might be related to joint damage or a history of depression. Once we find out, we can develop some appropriate ways of dealing with it.”

Managing fatigue better

Experts stress that the aspiration is currently to manage fatigue, not to get rid of it entirely. Depending on the causes of an individual’s fatigue, various options are available; drugs such as anti-TNF therapy drastically reduce fatigue in many patients with rheumatoid arthritis (but not back to normal levels and they are not a recommended treatment for fatigue), and exercise, and cognitive behavioural therapy (CBT), which addresses thought and feelings and their link to behaviour may be helpful. An Arthritis Research UK-funded clinical trial in Bristol is currently looking at whether a 6-week self-management course involving CBT is more helpful to rheumatoid arthritis patients than just handing them an Arthritis Research UK leaflet on looking after joints and managing fatigue.

“During the course we talk to patients about difficulties they might have sleeping, which is a big issue for some people but not others, about stress, and we help them with achievable goal-setting and get them to list activities such as “drainers” and energisers” – activities that tire them or give them energy,” explains research associate Celia Almeida. “Some activities, such as exercise or gardening, fall into both camps, depending on how people are feeling. Patients are encouraged to channel their frustration and anger into positive action, learn to establish some ‘me time,’ and how to set priorities for the limited amount of energy they have.”

The clinical trial is not due to finish until the end of the year, and results will not be published until next year, but Ms Almeida says that so far the informal comments from the patients receiving CBT has been positive. “There’s a sense that the course has been life-changing for a lot of people.”

Part of the benefit, she believes, is that the course acknowledges that fatigue is important to patients and is a major factor in rheumatoid arthritis, hitherto under-recognised by rheumatologists. However, according to Sarah Hewlett, that view is now becoming outmoded.

Taking it seriously

"We’re getting there in terms of fatigue being taken seriously, and this has largely been driven by patients,” she acknowledges. The fact that an international consensus has now been reached that fatigue should now be measured in all rheumatoid arthritis clinical trials is a major step in the right direction, as unless ways are found to accurately measure fatigue it cannot be adequately dealt with.

Bev Davis agrees that rheumatologists are now more understanding of fatigue than in the early years of her disease. For the past eight years she has been a patient partner at Bristol Royal Infirmary, and her role is to give the patient’s view on all research projects that are being set up.

She is delighted that fatigue in rheumatoid arthritis is being addressed.”It’s so debilitating,” she says. “It’s hard to explain to people that you’re not just being lazy, and to say to them: ’hang on, it’s the illness; it’s not me.’”
Arthritis Research UK’s fatigue and RA taskforce is due to report back at the end of the year.

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