17 June 2020

How do patients with chronic health conditions experience and manage their fatigue?

Fatigue is multifaceted, complicated and changeable. In order to delve deeper into the complexities of living with fatigue we asked patients with chronic health conditions to share their experiences. Read on to find out what we heard.

What does fatigue feel like?

The results from a research study into the complicated issue of fatigue found that participants described 10 main experiences: depressive symptoms, subjective tiredness, movement, anxiety and stress, pain, cognitive symptoms, muscular control, emotional lability, sleep and sensitivity, each described in at least 10% of people surveyed. Additionally this study showed that:

  1. fatigue often affects more than one of these areas at once
  2. the presentation almost always changes over time

Do patients with different chronic health conditions experience fatigue differently?

There was a lot of overlap in the symptoms and problems experienced by participants with different underlying chronic health conditions. However, the results of our patient-led study indicated that fatigue also interacted with underlying health conditions.

For example, people with musculoskeletal system or connective tissue diseases experienced more frequent movement, pain and sleep problems linked to their fatigue. Sleep problems and subjective tiredness were more often reported in those with endocrine, nutritional or metabolic diseases (primarily diabetes). More frequent sensory changes are described in patients with diseases of the nervous system (mainly chronic fatigue syndrome), and more anxiety and stress in those with mental, behaviour and neurodevelopmental diseases (primarily anxiety and depression).

How does fatigue affect everyday life?

Impairments due to fatigue touch many aspects of daily life, including work and education, daily life demands such as housework and cooking, physical activity, the ability to socialise and engage in free-time activities. Patients reported:

  • difficulties with physical activity, but impairment ranged widely from problems with basic physical activities to difficulties in taking part in sports or exercise 
  • social and interpersonal problems, including socialising, seeing friends or keeping social engagements
  • trouble in engaging in activities that they enjoy, such as engaging in hobbies such as reading and gardening
  • problems in vocational or education functioning
  • difficulties with daily household chores and activities, such as cooking, cleaning, shopping, personal hygiene and grooming;
  • problems with sleep

Similar impairments were described by participants with different health conditions, albeit with slightly different patterns in the frequency for different of complaints. For example, individuals with musculoskeletal system and connective tissue diseases described greater impairment across almost all of these areas, and reported more frequent restrictions on basic physical activities and walking.

How do patients manage their fatigue?

Just under a tenth of the group surveyed did not manage their fatigue in any way, either because treatments only addressed their chronic health condition, because they simply lived with fatigue, or because previous treatments were not successful. All others used medical, psychological, health, lifestyle, herbal and holistic approaches for managing their fatigue. Many combined a range of approaches.

Almost half of participants described using drugs, including sleeping pills, pain medication and cannabis, a smaller proportion used counselling or therapy, and physiotherapy. However, but it was often unclear if the reported treatments were for the underlying chronic health conditions or were used for fatigue. This could be because managing fatigue depends in part on effectively managing the underlying chronic health condition.

Around a third of participants reported increasing sleep and rest, or using specific sleep patterns or schedules. Dietary management was described by around one-fifth of the sample (healthy diet, gluten free, low carbohydrate, sugar-free or low sugar, fasting). Around one-fifth of participants described using supplements or herbal remedies, and a similar proportion said that they managed their fatigue with exercise.

For the full research findings, take a look at our freely available eBook.

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Dr Caroline Skirrow

Senior Scientist

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