RA will slow you down. But don’t let it stop you.

I’ve always been naturally fit and active and I’ve exercised and played sport my whole life. My main passion has always been football and I was lucky enough to play at a semi-pro level, but in the summer of 2015 when I was 27 years old, I was really into running. I was running around 50 miles per month and had completed several 10Ks and half marathons over the preceding 12-month period. I felt great and I was continually improving my PBs across several distances. I was also playing in a weekly 7-a-side football league, scoring plenty of goals as we soared up the table following a shaky start. 

But then, out of the blue, I began to feel stiffness in my right thumb.

At first, I didn’t think much of it and simply put it down to overuse/injury from playing football and tennis and undertaking an array of strenuous DIY and gardening jobs that came with renovating a house and maintaining a mature garden. So, I continued as normal and not long after, ran a half marathon PB (that still stands to this day) and helped the 7-a-side team to finish as runners-up in the league. 

However, over a period of 8-12 weeks, the initial stiffness in my thumb gradually turned to pain and by the time we played in the 7-a-side cup (where we finished as runners-up yet again), I had started to develop similar symptoms in both of my wrists, only this time, there was visible swelling and more intense pain. Everything became a struggle, and I was in constant pain performing simple everyday tasks, like getting dressed, turning door handles, and picking up a cup of tea. I could tell that whatever was going on was serious, and it was clear that I had to stop all forms of activity immediately before I did any significant damage to my joints. For someone who had always been so active, that was hard for me to accept. 

Rheumatoid arthritis? Never heard of it.

Initially, I was told by my GP that the pain in my thumb and wrists might be related to a repetitive strain injury and to rest for a month. This didn’t sound right to me but there wasn’t much I could do at this stage but follow doctor’s orders and come back if it didn’t get any better. But soon after visiting the GP, I developed a large swelling in the back of my right knee and within three days of it appearing, my whole lower leg was swollen, my calf was severely painful to the touch, and I was unable to walk. I was quickly referred to my local hospital where I was given Warfarin and tested for a blood clot, but this came back negative.  

I was then advised that it was most likely a Baker’s Cyst which had ruptured and leaked down into my calf. Baker’s Cysts are often associated with inflammatory arthritis, and it was at this point that I was introduced to an autoimmune disease known as Rheumatoid Arthritis (RA) by my GP. ‘Rheumatoid Arthritis?’ I thought. “Never heard of it”.

To begin with, I was prescribed Naproxen, a nonsteroidal anti-inflammatory drug (NSAID), and sent for blood tests every two weeks to monitor my inflammation levels. However, the symptoms continued to worsen and by Christmas, the acute pain, inflammation, and stiffness had progressed to both knees, both ankles and even my jaw, which made it extremely difficult and painful for me to eat. I went back to my GP who prescribed more Naproxen and sent me for an additional blood test, this time checking for RA. The results from this test were, surprisingly, negative and I was told by my GP that it was a form of inflammatory arthritis and referred to the Rheumatology Department at my local hospital.

During the period between this and my appointment at the Rheumatology department, the inflammation in my ankles and wrists became increasingly worse. I also started to experience terrible night fevers. I would wake up each night with a very high temperature and drenched in sweat but be shivering at the same time. It was impossible to get comfortable or regulate my temperature, which was very sleep-depriving. I remember these nights being some of the most distressing times.

I finally attended my appointment at the Rheumatology Department in February 2016, where, based on my blood results (my CRP level was 105 when it should be <5 and my ESR level was 30 when it should be between 1-7), I was officially diagnosed with seronegative RA. Although I knew it was on the cards, I was still devastated, and I struggled to picture a future that didn’t include me running or playing sport.

Never too young to be old.

I remember the feeling sitting in the Rheumatology Department waiting area vividly. The room was full of much older patients – most of whom were in their 60s or above – and I just felt completely out of place. At this point, I had read some information booklets on RA and knew that it wasn’t ageist, but I was young, fit, and healthy and as I looked around the room, all I could think was, ‘why me? This isn’t fair’.

I also felt angry. I know that RA regrettably brings about feelings of depression for many people, but for me, it was anger. Why me? What did I do wrong? Am I being punished for something? I found it very difficult to accept. And this was compounded by the fact that I didn’t exhibit any of the risk factors. I don’t smoke. I rarely drink alcohol. I’m not overweight. I eat well. I’m relatively young (RA is most common in 40- to 60-year-olds). I’m male (women are three times more likely to be affected). And there is no family history of RA. It just didn’t make sense, and that infuriated me.

Alongside the anger was guilt. Without a known cause or trigger, it’s impossible not to speculate on how or why RA presents itself. Did I trigger it? Should I have eaten differently? Was I over-exerting myself? Should I have rested my body more? It’s hard not knowing and not having that closure. 

And of course, there was fear. I feared having an incurable, auto-immune disease. I feared what the long-term effects of the disease might be, and I feared what the side-effects of the disease might be. I also feared the potential long-term side-effects of taking regular medication (e.g. Methotrexate can impact liver function and Hydroxychloroquine can impact vision). Truth be told, I still experience these fears today. And now, I also worry that my child(ren) may be more susceptible to developing RA.

Managing these feelings ultimately starts with acceptance, and this isn’t easy to do – at least, it wasn’t for me. It took me a long time to accept my diagnosis, and even longer to acknowledge the disease and make accommodations for it. But this was an important step, and it enabled me to feel more comfortable with my new reality and better appreciate the normal things that I used to take for granted before RA.

If you shook me, I’d probably rattle.

The Rheumatologist started me on a combination of Methotrexate (a chemotherapy drug used to treat many cancers) and Hydroxychloroquine (a disease-modifying anti-rheumatic drug), but, as these take time to build up in your system, I was also prescribed a course of steroids (Prednisolone) to quickly get the inflammation under control. In my case, the Prednisolone was very effective and relieved most of my symptoms almost immediately which I was extremely grateful for. I was also told to start going for blood tests every two weeks to monitor for any potential side-effects from taking Methotrexate and Hydroxychloroquine. 

Initially, I found it difficult to comprehend that I would need to take medication so regularly and, for the rest of my life. I take six Methotrexate tablets once per week, one Hydroxychloroquine tablet twice a day, and one Folic Acid once per week (to help offset the side-effects of Methotrexate). At first, I was overwhelmed by the number of tablets I had to take, and it wasn’t easy remembering to take them. But it soon became a normal thing to do, and I set up alerts on my phone to remind me when to take them.

I’ve been lucky that I haven’t experienced any side-effects from the tablets. There are many people who suffer severe side-effects, particularly from taking Methotrexate, and that cannot be easy to deal with week in, week out. What I have noticed though, is that illnesses and infections tend to hit me much harder than they used to and it’s taking me a lot longer to recover from them. As the Methotrexate is reducing the activity of my immune system, what used to be a one- or two-day illness is now taking me three to five days to recover from.

I did stop taking Methotrexate for a while so that my wife and I could try to conceive. To begin with, my RA stayed in remission, and so I decided to continue down the natural path in the hope that I could live without Methotrexate. Over the course of several months though, my joints slowly began to stiffen and become inflamed, and it was clear that I needed to start re-taking it before things got much worse. Luckily for us, by that time, my wife was already pregnant.   

Running in treacle.

During my appointment at the Rheumatology Department, I asked the Rheumatologist if I would ever be able to run or play sport again to which he told me a story about one of his other patients – a 55-year-old women with RA – who had recently completed a marathon. This immediately allayed some of my fears and I left with real hope of returning to somewhat of a normal life. 

Fortunately for me, the combination of Methotrexate and Hydroxychloroquine worked and, for the most part, it has kept my symptoms in remission and enabled me to live my normal life and perform everyday tasks without being in pain. It also enabled me to be active again, and, 17 months after my RA symptoms stopped me from exercising and playing sport, I was able to lace up my running shoes once again at my local Parkrun. I remember it feeling really uncomfortable. I remember my knees being extremely stiff. I remember feeling like I was running in treacle. And I remember having to rest for two weeks before trying to run again. But I also remember being elated. I was active again. And for someone who has always exercised and played sport, that was a huge win. 

Over time, I made gradual improvements and within eight months, I had completed the Great North Run. Within 14 months, I conquered the Edinburgh Marathon in 3hr42m. And although, I’ve not managed to reach the same level of performance or run as quick as I did before I developed RA, I’ve achieved things that at one stage, seemed unfeasible. On top of that, I’ve completed many 40+ mile cycle rides and have even played another season of 7-a-side football, where this time, in a new team, we went all the way and won both the league and the cup!   

It’s a marathon, not a sprint. So, run wisely and walk if you have to.

That’s not to say any of it was easy or plain sailing. There have been plenty of rough days and worried thoughts. There have been times where my RA has been active, and I’ve just wanted to wallow and not talk to anyone. There have also been times where I’ve wanted to do things – like carry my son upstairs to bed or take him out on the back of my bike, or even join friends on a countryside hike – but my RA has been active, and I haven’t been well enough to do so. During these times, it’s very easy to feel cheated, but it’s important to respect the disease and really appreciate the good days. I learnt to respect it – sometimes the hard way – and I try to work with it rather than against it as much as I can now, to try and ensure that I feel better than I do today, tomorrow. The first year is usually the worst, and so I take comfort in the fact that I endured it and have since experienced better days, and you should too. 

Everyone’s experience with RA will be different but things will improve, particularly once you find a medication that works for you. It’s also important to take control and learn as much as you can about RA and the medication you take. The NRAS website has a wide range of informative resources available to support you with this, and even now, six years on, I’m still learning and re-learning things (like how Hydroxychloroquine makes skin more sensitive to sunlight – I don’t know how many times I’ve ignored putting sun cream on and been burnt!). Through this self-learning, you can better understand the disease and make the necessary lifestyle adjustments to improve your own situation.

And always educate others where you can. Most people (including myself once upon a time) hear the word ‘arthritis’ and immediately jump to their preconceived notion of an elderly person hobbling along, grumbling about their sore knee or ankle. THAT IS NOT RA. Make sure people understand what RA is, what it does, and how it makes you feel because it’s only through challenging this misperception that others can become knowledgeable of it and aware of its limitations. 

If every RA journey was a marathon, then I’m probably 2-3 miles in and still trying to find my rhythm. But whether you’re taking your first step or running your last mile, hopefully you can relate to my experiences in some way and can take comfort in the fact that you are not the only one out on the course.