Extreme fatigue

Fatigue can creep up on me when I’m least expecting it. When I feel I have enough energy to do a certain number of activities in one day (lots of planning involved so I don’t do too much), it can come along and just wipe me out. There’s no way of knowing how long it will stick around for either. Physical exhaustion is only half of it – the kind of tiredness where your whole body feels heavy and every step is a mammoth, painful effort. The emotional and mental side is equally tough. ‘Brain fog’ descends and it can be hard to concentrate, with simple tasks demanding more effort than usual.

Doing gentle exercise (walking) to reduce fatigue might seem counter-productive, but it has helped to strengthen my muscles and to improve my energy levels. Muscle wastage on my arms and legs has contributed to my fatigue so I’m tackling that through a combination of physiotherapy and walking. Pacing myself is easier said than done, but I am getting better at judging how much I can do each day. If it means resting during the day so that I can go out in the evening, that’s what I do. Better than going all-out one day, leading to sheer exhaustion and inability to get things done the next day. Although chronic fatigue is ever-present due to rheumatoid arthritis and Ehlers-Danlos Syndrome, rather than waiting for it to envelop me I am trying to minimise its impact as much as possible. Here’s how: gentle exercise, a healthier diet, plenty of sleep, planned (and fewer) activities, pain relief when it gets really bad, mindfulness to deal with stress, and saying no to things rather than overdoing it. Saying ‘no’ to things is the hardest part. It means I still go out with friends but maybe for a shorter time, allowing me to do more the next day rather than feel totally zonked out and not up to doing anything. Fatigue won’t stop me from achieving things: it may take me longer to get there but often the journey is just as important as the destination.




It’s 3am and I can’t sleep. It feels as if a mobile is vibrating intently and relentlessly in the middle of my chest, I can hear my heartbeat pulsating in both ears, my right arm feels heavy and numb like it’s anaesthetised, my head is pounding with migraine, my wrists are burning and my right ear feels like it’s filled with water.

For 8 days my rheumatoid arthritis has been raging without treatment because I had to stop Sulfasalazine last Friday due to raised liver enzymes and low white blood cells. This was devastating because my joints actually felt better and I felt less like a zombie due to the extreme fatigue and brain fog that has returned with a vengeance. I won’t see the consultant for another week so have to live with all these unpleasant sensations and cloud of pain and exhaustion til then.

One of the reasons I have insomnia (apart from the untreated RA) is that almost exactly a year ago, 5 September 2012, I had an extremely rare, severe allergic reaction to hydroxychloroquine sulphate involving hallucinations and broncho-spasms over 2 days. As it happened around 2.30am, I keep getting flashbacks to that time and that exact feeling that I was going to die comes flooding back. It took months but I was finally diagnosed with Post Traumatic Stress Disorder and Health Anxiety on top of Rheumatoid Arthritis and Ehlers-Danlos Syndrome. I recently started therapy for the PTSD and hope I can manage to banish it soon.

Dealing with RA is tough and depressing in itself but for some people (and unfortunately this has happened to me three times with Disease-Modifying Anti-Rheumatic Drugs) the drugs have scary side effects. It is frustrating that there isn’t just one treatment that suits everyone, rather than feeling like I’m taking a gamble each time I try a new drug. Right now I’m just going to try and relax, listen to classical music (Mozart in particular has a calming effect) and will try once more to sleep.