True fatigue is something that can be hard for those who don’t have it to understand.
Clinically speaking, fatigue is an overwhelming sense of tiredness, exhaustion and lack of energy. It’s exhaustion that doesn’t disappear after rest or sleep.
“Many people describe it as feeling like their battery is completely discharged. They can’t manage to do anything at all,” says Katrine Brække Norheim at Stavanger University Hospital.
“They may also have brain fog, which means they have difficulty concentrating, forget what they are doing and find it difficult to absorb information.”
In recent years it has become clear that fatigue is a major aspect of different inflammatory diseases, such as lupus, arthritis, psoriasis and inflammatory bowel diseases (IBD), including Crohn's disease and ulcerative colitis.
Now Norheim and her colleague Tore Grimstad have conducted a review of the research on fatigue in patients with IBD.
Their conclusion is that fatigue is a significant and often underestimated aspect of these illnesses. They also say we need to know more about the mechanisms behind the phenomenon, to find new treatment options.
The two researchers looked at 28 different studies of fatigue and IBD, and concluded that people with the diseases experience extreme exhaustion much more frequently than normal.
While 2 to 12 per cent of the general population reports being fatigued, fatigue affected between 22 and 77 per cent of IBD patients.
Additionally, these patients were often more exhausted when their disease was more active.
The results do not surprise Norheim.
“If you ask these patients if they experience fatigue, they say often yes,” Norheim said.
“But fatigue has long been underdiagnosed and undertreated. Many patients find that their physicians are not that concerned if they talk about the problems with fatigue.”
Norheim believes the significance of fatigue in IBD has been underestimated.
“Sometimes it's fatigue—not the other symptoms—that is the main reason why people do not have jobs,” she said.
Currently, no one is really sure what causes exhaustion in these patients. But one leading hypothesis is called sickness behaviour.
This describes your immune system’s reaction to an infection or inflammation where you feel lifeless and lose your appetite, and just want to hide under a blanket on the couch. It’s exactly how you feel when you have a bad cold or the flu.
Indeed, it can be a helpful behaviour when you are sick. It ensures that you get rest and conserve the energy your body needs to heal. It also has the added benefit of making you less likely to infect others, since all you want to do is hide under that blanket on the couch.
But people with chronic inflammatory diseases, such as IBD, may end up almost constantly fatigued, as if the body is permanently reacting to the inflammation.
Norheim says some patients have benefitted from treatment using anti-inflammatory drugs. This supports the hypothesis that the immune system itself causes the symptoms of fatigue.
But the researchers caution that we still don’t know enough about why people with inflammatory diseases are so often deeply fatigued.
There is currently no specific treatment for extreme fatigue, Norheim says. Patients are advised to get regular exercise and may be offered cognitive therapy to help them find ways of coping with the disease in daily life.
The few studies that exist show that this can have a positive effect, but that the effect disappears once the therapy ends.
It appears, however, that research on the topic is accelerating, according to Norheim and Grimstad’s article, which was recently published in the Journal of the Norwegian Medical Association.
“There is a huge benefit for patients that there is more focus on fatigue,” Norheim says.
[In Norwegian] Tore Grimstad og Katrine Brække Norheim, Utmattelse ved inflammatorisk tarmsykdom [Fatigue related to inflammatory bowel disease], Tidsskriftet for Den norske legeforening, 2016.