Fatigue in rheumatoid arthritis, once ignored by the medical profession, is now taken seriously but still affects many people.
For 30 years Bev has been living with the debilitating effects of rheumatoid arthritis – particularly intense fatigue.
‘It’s absolutely draining, to the extent that all you want to do is to lie down,’ says Bev, now 48. ‘Even reading is too much. You become mentally and physically blocked, and it’s all you can do to lie on the sofa and watch the telly. It brings you down so much because you can’t plan to do things.’
'It’s so debilitating...it’s hard to explain that you’re not just being lazy and to say to them, “Hang on, it’s the illness; it’s not me".'
For Bev the fatigue is worse when she has a flare-up, and she has learned over the years to try to pre-empt its onset.
‘I try to pace and plan my day and allow myself rest periods. I try to conserve energy if I know I’m going to be doing something,’ she explains.
Bev, from Portishead, had the worst time when her three now-grown-up children were young.
‘Just taking them to school or doing the shopping was exhausting. Now they’re grown up it’s slightly easier to plan my life, but for 20 years just the thought of going out in the evening with friends was impossible. I’d make the tea then flop down on the sofa and that would be it.
'Fatigue has had a huge impact on my life and on my social life. I’ve talked about it with other people with rheumatoid arthritis and we have a term for when the fatigue is really bad – we call them “wipe-out days”.’
Both patients and clinicians agree that fatigue associated with rheumatoid arthritis is very different to normal tiredness.
Bev believes that rheumatologists are now more understanding of fatigue than in the early years of her disease. She’s now a patient partner at Bristol Royal Infirmary, and her role is to give the patient’s view on all research projects that are being set up.
She’s delighted that fatigue in rheumatoid arthritis is being addressed more effectively through research and improved clinical practice.