Diet and exercise can help – but with RA there can still be flare-ups – Malcolm’s story Written by Malcolm Malcolm is an NRAS member and one of our Patient View Representatives. He’s shared his memories of diagnosis and the support he’s received from the NRAS community. I still remember the day, back in 1984, when I was diagnosed. The consultant just came into the room and said: ‘You’ve got RA.’ What’s that?’ I asked. ‘Rheumatoid arthritis’ ‘And what’s the prognosis?’ I asked. ‘Well, you’ll be on tablets for the rest of your life’ was his answer. And then he just left the room. My first symptoms had appeared on a family holiday in France. I’d had tonsilitis, and while we were away I noticed this stiffness all over my body. I was finding it difficult to roll over in bed at night. I thought it was just the after-effects of tonsilitis, but when I got home I tried to go for a run, and could barely manage 100 yards. That’s when I realised I needed to see a doctor. My GP’s first reaction was ‘it’s not arthritis, you’re just run down’. In those days, before the internet and social media, it was much harder to find out any information. So when the GP ruled out arthritis, I didn’t look into it any further. But after a couple of months, with symptoms getting worse, I was referred to the hospital – and that’s when I was diagnosed. I must admit, I was scared. I was in my 30’s, married with children aged 9 and 12, and I had a responsible teaching job, as head of lower school. I’d always been physically active – a typical man, I loved my sport! I played rugby, cricket, golf, I ran half marathons. And suddenly it felt like the end. This consultant seemed to be telling me I had to stop all my activity, and just go home and take my tablets. By strange coincidence, the next day my wife Sheila spotted a book in a health food shop about rheumatoid arthritis and diet. I’d always believed that nutrition plays a big part, so I gave this diet a try. Of course, everyone is different and I’m not saying that changing your diet will help everyone, but it certainly did make an initial difference to me. My hands had been swollen to the point that I couldn’t get my wedding ring on. But I noticed the swelling going down, so that encouraged me to keep going – and I’ve stuck to that same diet ever since: avoiding red meat, alcohol and dairy. I try to keep active as well. I either go to the gym or for a bike ride most days. It helps to keep my joints moving – I feel worse if I haven’t done it. So for me, diet and exercise really help. But we all know, with RA you can always have flare ups. On a good day, I’m fine. But on a day when I’m struggling, it can be a different story. I tend to get stiffness mainly in my shoulders and my knees. I find the fatigue really frustrating – that and not being able to do things with my hands. I struggle to open jars and bottles, which is really annoying! But my wife and family have always been a great support. I’m blessed with two daughters, who have always looked after me. They know my limitations and treat me gently. My granddaughter does the same, although she makes fun of my joints clicking! It was a few years after diagnosis when I found the NRAS website. I had a quick look, but at the time I was still thinking: I don’t need support. I can sort this out myself. Big mistake! But then someone at NRAS reached out and invited me to a local meeting, where I got talking to other people, sharing our stories of living with rheumatoid arthritis. And for the first time in a long time, I felt I didn’t have to explain myself. When you’re talking to other people who have rheumatoid arthritis themselves, they just understand you. That camaraderie is so helpful – I’m really grateful to NRAS for that. I’ve gained a lot of useful information from the SMILE e-learning modules. I admit I have a limited concentration span, I like things short and sweet. And the great thing about SMILE is that it’s straight to the point. I’ve found the modules about medicines, nutrition and exercise especially helpful. They’re good at reaffirming what you already know, and giving you extra new information – practical things you can try and do. I also look out for the weekly NRAS News updates online – they’re a good roundup of all the things that are happening in NRAS, in the wider world, research and treatments and so on. I keep some of them on my watch later list, in case I want to go back to them. One thing which I wish had been available when I was diagnosed is the NRAS symptom checker. The internet has its uses, but it’s important to have a tool designed specifically with RA in mind. If I’d had access to something like that, I’d have had more knowledge when I was speaking to doctors. I’ll never know whether it could have shortened the time it took for my diagnosis, but at least I might have said to my doctor, ‘these are my symptoms, I think it might be rheumatoid arthritis.’ But of course, in those days, you just had to trust your GP and their knowledge. So I think an online symptom checker is a brilliant idea. Because of when I was diagnosed, it took me a few years to find NRAS. But I’m glad I did! They’ve provided online and face-to-face support, and a community that’s been so important. NRAS has made me aware of things I wasn’t aware of before and I’ve met people that will stay friends for the rest of my life. I’m forever grateful for NRAS. Help us keep providing the information, friendship and support for people like Malcolm – play our 25th anniversary raffle today. Sharing your story can not only help you, but others living with RA. Why not get in touch with us? 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