Patients with rheumatic conditions often report being unable to get out of bed, having countless nights of restless sleep and being weighed down by relentless exhaustion – but their symptoms of fatigue aren’t always managed appropriately.
“It was almost like I needed plugging in, like a mobile phone; the battery had gone,” one patient said.
“I don’t have the strength to move. My body feels so heavy, it doesn’t function,” another patient said.
“When I get really fatigued, I feel that if I don’t go lie down, I’ll fall down.”
These are quotes from qualitative studies of patients with rheumatic disease, presented by patient advocate Dr Savia de Souza at EULAR in Madrid in June.
Dr Souza was diagnosed with rheumatoid arthritis almost a decade ago, and now works with the Centre for Rheumatic Diseases at King’s College London in the UK.
Her presentation was one of many that covered the topic of fatigue at EULAR this year.
Another study of around 370 patients, presented by Dr Ellen Arnstad, a paediatrician and PhD student at the Norwegian University of Science and Technology, found that over one-third of patients with active JIA had severe fatigue 18 years after diagnosis.
Why was fatigue such a hot topic at EULAR?
Rheumatology Republic caught up with Dr James Galloway, an epidemiologist and rheumatologist at King’s College London in the UK, to find out.
“For many years, we have not addressed fatigue adequately as part of our disease management,” he said.
“I think if you look at routine practice many services, they do not routinely measure or act upon fatigue.
“Although our drugs are fantastically effective for controlling the inflammatory burden of disease and supressing swollen joint counts, the response in terms of controlling fatigue is lagging. So, we see there remains an enormous burden of fatigue and low energy amongst people with rheumatic disease.”
Listen to the full interview here: