This is the lay version of the EULAR recommendations for managing fatigue in people with inflammatory rheumatic and musculoskeletal diseases. The original publication can be downloaded from the EULAR website: www.eular.org.
Introduction
EULAR – the European Alliance of Associations for Rheumatology – gives advice to health professionals and patients about the best way to treat and manage diseases. In 2023, EULAR produced new recommendations on how to manage fatigue that affects people with an inflammatory rheumatic and musculoskeletal disease (shortened to I-RMD).
Doctors, nurses, other health professionals (such as physiotherapists, occupational therapists, and psychologists), and people with personal experience of an I-RMD and fatigue worked together to develop these recommendations.
What do we already know?
There are many different types of I-RMD, such as rheumatoid arthritis, psoriatic arthritis, and ankylosing spondylitis – as well as lupus, gout, and systemic sclerosis. Although there are differences between I-RMD, there are also some common features. These include an autoimmune component, where inflammation causes swelling or pain in the joints and muscles.
Fatigue is common in people with an I-RMD. This extreme tiredness is recognised as one of the most challenging symptoms to manage. Unfortunately, the underlying causes are not clear. It is likely that they are not the same for everybody and that they can change overtime. There is no cure for fatigue, but we do have evidence for some approaches that can help. We have examined this evidence in-depth and used it to produce recommendations for how to support people with I-RMD and fatigue.
What do the recommendations say?
In total, there are 4 overarching principles (general points) and 4 recommendations (specific points). The principles say that healthcare professionals should be aware that fatigue is related to biological, psychological, and social factors. Health professionals should monitor patients’ fatigue and offer them management options. . Decisions about which options to take should be shared between patients and health professionals. Finally, fatigue management of should be based on each patient’s needs and preferences. Issues to consider include patients’ disease activity, any other health conditions they have, and individual psychosocial or contextual factors.
Each recommendation is based on the best current knowledge from studies of scientific evidence or expert opinion. The more stars a recommendation has, the stronger the evidence is. However, recommendations with limited scientific evidence may be important because the experts can have a strong opinion based on experience even when the published evidence may be lacking.
One star (*) means it is a recommendation with limited scientific evidence.
Two stars (**) means it is a recommendation with some scientific evidence.
Three stars (***) means it is a recommendation with quite a lot of scientific evidence.
Four stars (****) means it is a recommendation supported with a lot of scientific evidence.
Recommendations
- Your level of fatigue (severity), the impact it is having, and your coping strategies should be assessed at your appointments.*
Your healthcare team should include regular assessment of fatigue in your clinical appointments for your I-RMD. This should include whether you have any fatigue, how severe it is and how much it is affecting your life. Your team should also discuss coping strategies with you to help find something that works for you personally. Help and support to manage fatigue might be provided by various healthcare professionals, including rheumatologists, doctors, nurses, psychologists, nutritionists, physiotherapists, occupational therapists, social workers, or dieticians.
- If you have an I-RMD and fatigue you should be offered support to take part in physical activity.****
As part of clinical care, you should be offered access to tailored physical activity programmes/courses. These need to be matched to your support needs, preferences, resources and abilities. You should also be encouraged to stay physically active in the long-term. Evidence has shown that being physically active or exercising can help to reduce fatigue.
- If you have an I-RMD and fatigue you should be offered psychoeducational interventions.**** As part of clinical care, you should be offered access to programmes/courses that provide education and psychological support for managing fatigue. There is evidence that this sort of education can help people to understand and cope better with their fatigue.
- If you have fatigue – or if it gets worse – your rheumatology team should check your disease activity status and consider starting or changing immunomodulatory treatment.**** If you start to experience fatigue or if your fatigue starts to get worse, a health professional should check your disease activity levels. Depending on your disease activity level, this might result in starting or changing immunomodulatory treatment.
Summary
Overall, these recommendations give guidance to health professionals and patients about fatigue management for people with an I-RMD. You should work with your healthcare team to make an informed decision about your fatigue and its treatment.
Recommendations with just one or two stars are based mainly on expert opinion and not backed up by studies, but these may be as important as those with three or four stars.
If you have any questions or concerns about your I-RMD, your fatigue or your medication, you should speak to a health professional involved in your care.
