“Being diagnosed with psoriatic arthritis in your twenties isn't something you think about.”

30 September 2021
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Adam, 31, struggled with hypermobility, primarily in his ankles throughout his teenage years and at 22 he had a calcaneal osteotomy and ligament replacement in his right ankle.

After recovering from the surgery, Adam began to suffer from periods of stiffness and fatigue - he was eventually diagnosed with psoriatic arthritis (PsA) when he was 26.

Here, he shares his story of diagnosis, how he’s learnt to adapt and what helps him to find balance in daily life.

“I was 26 when I was diagnosed.”

After experiencing prolonged stiffness of the joints, aches and general fatigue, I went to my GP and was told that I was over doing it.

I played football and went to the gym a few times a week. I was told to rest and take ibuprofen. I carried on as normal, knowing that the aches were getting worse.

One evening I went to five-a-side as normal and I was aching quite a bit, but assumed all was ok. I was home alone and I remember going to roll over to turn the light off and not being able to move my legs from the waist down. The swelling was so intense in my knees and up to my hips that I couldn’t bend or move. It was a terrifying experience.

“I spent five days in hospital having various tests.”

My healthcare team focused on trying to get the swelling down in my knees to allow me to walk with a frame. It was an odd feeling doing something you associate with a pensioner.

The doctors found some small patches of psoriasis, which was something I never thought anything of.

After I left hospital, I spent a month on crutches and worked on rehabilitation exercises to get my mobility back.

Following further tests, I was formally diagnosed with arthritis which was a big shock. Being diagnosed with psoriatic arthritis in your 20s isn't something you think about.

“Every day is different, but with one constant - the aches are always there.”

You do learn to live with it. Simple things take longer in the mornings whilst your body is still getting going, so you just wake up half an hour earlier.

Your body may get tired earlier in the evening, so you go out earlier.

I still have a great life, a good career, and an active social life – it's just taken me a couple of years to find the right balance.

In terms of sports, I had to realise what my limitations were. I went back to football, a year after being in hospital and a couple of months into the season, I broke my foot falling up the stairs.

My consultant told me I may be more prone to bone damage with PsA. I thought about that and the prolonged periods to recover from games (three days at least) and I realised it was time to stop playing football.

Looking back, it wasn't as bad as I thought. Sure, giving up a game I loved at 28 wasn't my ideal, but it has allowed me to play more golf, spend time renovating my house and see my family and friends.

“I have issues with sleep and general fatigue.”

I’ve recently been diagnosed with fibromyalgia to go along with my PsA (lucky me!).

Sleep is very important and I can instantly tell whether I've had a good night’s sleep (seven hours) or a broken four-hour sleep.

If you can rest, then take it - don't be embarrassed by having that extra time in bed to boost your day.

Food also has an impact, as if I have a few days of junk food, my body doesn't like it and it goes after my joints. I’ve learnt to moderate what I do, whilst still enjoying myself.

“When I was first diagnosed, I was in a bad headspace.”

It would be a lie to say that I didn't struggle. I was fortunate enough to have great friends and family around me to help dig me out. It took some time; I must be honest.

My friend recommended a book to me, The Chimp Paradox, and that was a real help which I still turn to when I’m having a hard time mentally.

Setting goals is the other thing which helps me. A few months after I was diagnosed, I signed up for a 150-mile charity cycle ride. It made me get back into exercising and I found the rides a great way to clear my head. As well as getting my joints moving and I felt like I was doing something purposeful again.

It also helps to surround yourself with good people who understand what's happening. Keeping everything to yourself and trying to plow through doesn't work - I tried it.

“I've learnt to adapt to things, which has helped me in my personal and professional life.”

Because I have to adapt, i've learned to take a wider view to find the answers which work, rather than being tunnel visioned.

I've also learnt that I can say no to things. It sounds daft, but football was a huge part of my life and so important to me for many reasons. But by being able to say no to it, knowing it wasn't what was best for me, it has taught me that i can say no to other things which i never used to be able to do. I have always tried to be a people pleaser.

My mum, who has multiple sclerosis (MS), is a real inspiration for me. Her MS makes my PsA look like a walk in the park, but I still see her getting on with things, living her life and not letting her condition define her. It makes me think, if she can deal with that, then I can deal with mine.

“I think the awareness of arthritis is better now, than when I was diagnosed.”

Versus Arthritis’ presence on TV and social media has been great because it helps get the awareness out there. It shows the fact that arthritis is not just old people but young people get it too.

When I was at school arthritis was never mentioned.

I know that even my younger friends and family are still not really sure what it is and how it impacts me, other than it means "dodgy joints".

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