Fatigue and insomnia

Many PSCers complain of fatigue, a debilitating tiredness that makes even simple tasks difficult to complete.

The exact mechanism by which fatigue is caused in PSC is unclear. Benito et al (2010) found that psychological distress and physical pain (rather than associated IBD or PSC severity) were major determining factors of fatigue. Fatigue seems to correlate strongly with anxiety and depression in chronic disease (both liver and non-liver) (Kalaitzakis et al, 2012). In addition there is a high prevalence of fatigue in IBD patients (Römkens et al, 2011), and 60-70% of PSCers have IBD. We also know that fatigue can occur as a result of a loss of nutrients, minerals and vitamins. PSCers often report that they have disturbed sleep patterns and insomnia, all of which can contribute to the feeling of tiredness and fatigue.

Reviewed 10/05/12

  • Benito et al, 2010. Fatigue in Patients With Primary Sclerosing Cholangitis: An International Survey Study in Two Population-Based Patient Cohorts. Gastroenterology, 138(5), S1: S-320.
  • Kalaitzakis et al, 2012. Factors Related to Fatigue in Patients With Cirrhosis Before and After Liver Transplantation. Clinical Gastroenterology and Hepatology, 10:174–181
  • Römkenset al, 2011. High prevalence of fatigue in inflammatory bowel disease: A case control study. Journal of Crohn's and Colitis, 5, 332–337

How do PSCers deal with fatigue?

Exercise and a healthy lifestyle are paramount to improving quality of life for anyone with a long-term condition. At our 2012 Birmingham conference, Gideon Hirschfield said that the best treatment for fatigue is exercise in his opinion. As well as in PSC, he commented that fatigue is seen in all common inflammatory conditions such as arthritis and PBC and that it seems to be a complex mixture of your brain, your nervous system and your muscles. There will be a strong research focus on fatigue in the UK for patients with chronic diseases.

Many PSCers learn to pace themselves and factor in ‘rest time’ after activities or busy days by planning ahead. Understanding your own limits can be one of the hardest things to learn, especially when all you want to do is get on with life. It is important to talk to your friends and family. Fatigue is invisible and it helps when they recognise that you are not just ‘being lazy’, but you are genuinely exhausted and really do need to rest, or that you genuinely can’t stay out as late as you’d like to, or that a full weekend of activity will wipe you out in time for Monday morning.

Some PSCers have been prescribed medication to help with their fatigue, such as Modafinil although this is not prescribed as standard.

Reviewed 10/05/12

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