Conall's story: "The condition that left me unable to walk at 25"

Conall Holt, 27, from Manchester, began suffering glute pain in 2022 which he put down to muscle strain from exercise. Two years later, aged just 25, he was barely able to walk. In 2024 he was diagnosed with ankylosing spondylitis and began treatment which has left him pain free. He says he feels ‘lucky’ and now wants to ‘give back’ and offer hope to others going through arthritis. 

Living in pain without answers

I started with severe pain deep in my glute in 2022 which came and went ,but at times left me unable to walk. I’d always done a lot of sport and regularly gone to the gym so, at first, I just put it down to muscle tightness. As a typical bloke I didn’t go to the doctor straight away, just thought it would eventually resolve itself.

Two years later the pain was getting worse and worse and I’d spent thousands of pounds on a new mattress and a recliner sofa just trying to get some relief. I was also smashing anti-inflammatories without realising the risks, I’m surprised and lucky I didn’t end up with a stomach ulcer. I even had an appointment with a physio who suggested my work shoes could be causing the problem.

I did have other issues which, at that time, I didn’t realise were related, pain in my shoulder blade and rib sometimes when I took a deep breath which I just assumed was a chest infection but have since realised was related to my SI joint.

By the time I eventually did go and see my GP I was 25 and in deep pain. She did some research and then referred me to a place in Rochdale for an MRI. The appointment came through a couple of months later and they suggested it could be a number of things, one of which was ankylosing spondylitis, but I was told it would be a four month wait to see someone in rheumatology.

Diagnosis, treatment and recovery

I was in so much pain I felt I couldn’t wait that long, needed to get treatment as soon as possible, so I went through my work’s private healthcare. After another MRI, I was diagnosed with ankylosing spondylitis in the Summer of 2024 and told it needed immediate treatment which would have been expensive through private healthcare but, luckily, the NHS rheumatology appointment came through, the diagnosis was confirmed and they started treatment.

I remember them saying I needed to book another appointment so that a nurse could teach me how to give myself biologic medication and I asked if someone could do it there and then because I couldn’t face even another week or two waiting in pain. Within seven days of that first treatment the pain had subsided by around 70% and after just six weeks I was pain free and have had no more issues at all.

I had been so stressed out, in so much pain and just believing that was how my life was always going to be, that this was my future. At that point I was 25 and I couldn’t walk but I had a job, three dogs to look after, so I had to just crack on, just suffer in silence, which was really tough.

Finding hope and helping others

When I looked for stories online of people with this condition there were so many people struggling. I want others to know that’s not every single person’s journey, I know I’ve been really lucky, other than a little permanent damage to my pelvis, I’ve had no problems whatsoever. 
Last July I did an IRONMAN in Leeds, I’ve also done a half-IRONMAN in Nottingham, swam a marathon at Lake Windermere and done a couple of Hyrox events. I’ve had a really positive experience since starting on biologics and I want to share that, to give other people hope that arthritis isn’t always a life sentence.

I’ve become a patient partner at Manchester Rheumatology Clinic, trying to help them to make services better and advocating for other patients because it’s really important to me. I found it so traumatic being diagnosed, being told I had this progressive condition that was only going to get worse. I remember reading so many horror stories which, when you’re newly diagnosed, isn’t helpful and doesn’t offer you much hope.

I’m an example of someone with this condition that, if treated quickly and treated right, if coupled with looking after your own health, does not have to completely change your life. I’ve been trying to raise awareness on Instagram and have received a lot of really positive messages back from people. I’m trying to reach out because I found it very hard speaking with other 25-year-olds about having this condition because nobody really understood. If you get an injury you always have that mindset, that hope, that you will get better but one of the toughest things about arthritis is you don’t always have that hope. Knowing you have something that is chronic and progressive can take a real toll mentally.

I want people with this condition to know that they can go on to live a fulfilling life, to know that, with the right support and treatment, things can get better. I understand that, not everyone will have such a positive outcome and I feel very lucky, that’s why I want to give something back. It’s so important to have hope.