Rheumatoid Arthritis Awareness Week #LookDeeper #RAAW14

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I was one of 1,954 people with Rheumatoid Arthritis who completed National Rheumatoid Arthritis Society’s survey on the impact of chronic fatigue for those living with RA. Although I mainly use the term ‘Rheumatoid Disease’ now rather than ‘Rheumatoid Arthritis’, in this context I’ll use RA. It’s no surprise that 83% of survey respondents ‘felt that the public is not at all aware of the impact that chronic fatigue has on people’s lives’. I think the general public get confused between RA and Osteoarthritis (OA) and find it hard to understand the full implications of living with an invisible illness. I think this is partly due to how the media covers rheumatoid arthritis and because fewer people have RA than OA. (According to Arthritis Research UK, 8.75 million people (in the UK) have sought treatment for osteoarthritis). In contrast, according to NRAS, around 690,000 people in the UK have RA. Although it can strike at any time, it most commonly affects those in the 40-60 age bracket, and nearly 3 times as many women as men.

Four out of five people with RA answering the NRAS survey said that their healthcare professional has never tried to measure their level of fatigue, and 50% of people stopped working within six years. Things have to change. I think healthcare professionals and employers should treat fatigue as seriously as other symptoms like pain. All healthcare professionals should integrate measuring fatigue amongst RA patients into their overall approach to managing the disease, and employers should make reasonable adjustments in line with the Equality Act to ensure that employees with RA have flexible working conditions and are not discriminated against.

This is why Rheumatoid Arthritis Awareness Week is so important: awareness leads to understanding and action that will make things easier for everyone who has RA. Friends will understand that chronic fatigue means people with RA might go out for a short time rather than staying out late. Employers will be quicker to offer more flexible working arrangements to accommodate employees’ need for treatments and pacing their work day (rather than the person with RA having to broach the topic first).

degenerative joint disease or wear and tear.According to NRAS, around 690,000 people in the UK have RA. Although it can strike at any time, it most commonly affects those in the 40-60 age bracket, and nearly 3 times as many women as men.

For anyone new to RA, it is a chronic, systemic autoimmune disease that attacks the joints and can cause irreversible damage which can lead to disability. Symptoms include joint stiffness, swelling, extreme pain and chronic fatigue. Simple tasks that people without RA take for granted such as boiling the kettle and opening a jar can become painful and difficult. In some cases (but not all), RA can affect organs such as the heart, lungs and eyes. Here are some facts about my invisible illness, although I now self-inject twice weekly as well as take pills.

Although there’s currently no cure for RA, a number of drugs help to slow the progression of the disease and reduce pain, swelling and stiffness. Drug-induced remission is a real possibility. Treatment includes conventional disease-modifying anti-rheumatic drugs (DMARDs) including Methotrexate and the newer biological therapies (biologics) which are given to people for whom conventional DMARDs are ineffective or who have had side-effects from them. Like many people, I tried quite a few drugs before starting the biologic Enbrel which is starting to work, reducing inflammation and stabilising my bone erosions. My chronic fatigue remains though, which is why it’s crucial that people without RA look deeper to understand this hidden aspect of the condition which can be just as disabling (or even more so) than joint pain, stiffness and swelling.

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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.