Episode 6 | Patient Story | Guest: Catherine, patient at LBSM
Most patient stories have a clear spondylolysisarc: injury, treatment, recovery. Catherine’s doesn’t – because she is recording this conversation while still in the thick of it. She has a diagnosis now. She has a treatment plan. But she is still navigating daily pain, unpredictable fatigue, and the process of finding a medical approach that keeps the disease from progressing.
In this episode of the London Bridge Sports Medicine podcast, Dr Ajai Seth sits down with Catherine to talk through a decade-long journey from unexplained back pain to a diagnosis of axial spondyloarthritis – and what the experience of living with a chronic inflammatory condition actually looks like day to day.
The beginning: back pain that never quite went away
Catherine first noticed back pain when she was around 15 or 16. She sought help over the years – physiotherapy, chiropractors – and got some relief, but never a satisfying explanation. The pain was always there in the background.
The turning point came when she discovered a hard lump on her left sacroiliac joint – the joint where the base of the spine meets the pelvis. The lump itself was not painful, but the area behind it ached differently from her usual back pain. It felt significant. After letting anxiety build for a while, she went to her GP and was referred for an MRI.
The scan showed sacroiliitis – inflammation of the sacroiliac joints – which explained both the ache and the lump, which was surrounded by inflammatory fluid. It also indicated something broader: underlying inflammation in the spine itself. Blood tests followed. A rheumatology referral followed. And eventually, a diagnosis: “axial spondyloarthritis, which basically means inflammation of the spine,” as Dr Seth explains.
What axial spondyloarthritis actually feels like
The condition is not simply back pain. It is a systemic inflammatory disease that can affect multiple joints and organs, and its presentation is notoriously unpredictable. Catherine describes her experience:
- Morning stiffness: marked stiffness on getting out of bed that needs to ease through movement before she can function normally. This is a classic hallmark of inflammatory arthritis, distinct from the stiffness most people feel briefly after rest.
- Unpredictable fatigue: energy that can be good in the morning and then collapse entirely by afternoon. “Some days you feel great and then just at one point in the afternoon you’ll be completely wiped out and won’t want to move.”
- Thoracic spine pain: the area she now finds most debilitating. Constant pain with unpredictable flares.
- Chest tightness: inflammation at the costochondral joints – where the ribs meet the breastbone – creates a sensation of restriction and tightness when moving. “It’s like someone pulling your chest apart.” This is a recognised feature of axial spondyloarthritis that is often overlooked.
- Ankle swelling: episodic swelling in joints beyond the spine, a feature of the wider inflammatory process.
- Nail changes: yellowing and dark lines in the nails, which Dr Seth recognised as a subtle sign of systemic inflammation, particularly associated with autoimmune conditions.
The condition worsened significantly in the six months before diagnosis. What had been a nagging backdrop became a continuous and sometimes debilitating presence. “It’s got progressively worse,” she says. “Now it’s like a continuous pain that gets worse to the point where sometimes it’s completely debilitating.”
The symptoms nobody connected: bowels, psoriasis, and the wider picture
One of the most striking aspects of Catherine’s story is how many symptoms turned out to be part of the same condition – symptoms she had been managing separately, in isolation, for years.
She had been diagnosed with psoriasis – a skin condition closely associated with inflammatory arthritis. She had long-standing bowel symptoms that had been labelled IBS. She had bowel changes, severe bloating, painful cramping, and heartburn.
Following her arthritis diagnosis, a dietitian monitoring her bowel symptoms referred her to gastroenterology. A colonoscopy found two precancerous polyps (not thought to be directly related to the arthritis) and raised the possibility of inflammatory bowel disease (IBD) – a condition with known associations to axial spondyloarthritis. Biopsies did not confirm IBD, but the picture remains under monitoring.
Dr Seth is clear that these associations are clinically important: “Sometimes these symptoms are progressive over a long time and can be quite subtle. They don’t always present in the classic textbook way.” The bowel symptoms, skin symptoms, nail changes, and joint symptoms were all part of the same underlying process – they just were not recognised as such until the dots were joined.
Treatment: the journey to biologics
Catherine has had two steroid injections into the gluteal muscle, which work by dampening immune system activity and reducing joint inflammation. Her experience was instructive: the day after the first injection she felt dramatically better. The day after that she had a significant flare lasting three to four days. Then, gradually, she realised the injection had actually worked better than she had initially thought – the baseline had improved, even if it had not been eliminated.
“It’s very easy to forget just how bad it is when you’re having a flare,” she says. “When it’s there constantly, you don’t think about how bad it can be.”
The next step in her treatment plan is biologic therapy – a class of drugs that work differently from steroids, targeting specific components of the immune response rather than broadly suppressing it. These are particularly recommended for younger patients, given their better long-term profile. Non-steroidal anti-inflammatory drugs (NSAIDs) were considered but ruled out given the potential impact on her already irritated gut.
Dr Seth explains the rationale: “Arthritis can take its toll on the body over many years and can be quite destructive for the joints. For the long-term health of your body, it’s better to be on the right treatments earlier rather than later.”
Living with it: diet, exercise, and the fatigue cycle
Catherine’s day-to-day management has shifted substantially since diagnosis.
On diet: she has moved to a more anti-inflammatory eating pattern [Article] – seeds, nuts, adequate protein, regular meals. Skipping breakfast in favour of coffee, she found, was making her afternoon fatigue significantly worse. Eating consistently has made a noticeable difference, not so much to pain but to energy. “Changing my diet was one of the best things I could have done.”
On exercise: she is still working through this. She knows exercise is anti-inflammatory – research consistently shows that regular physical activity reduces joint inflammation and helps modulate the immune response – but pain makes it hard to stay consistent. “It’s such a vicious cycle. I know exercise is good and it’s anti-inflammatory, but I’m in pain so I don’t exercise, but then I don’t exercise, so I’m in pain.” Tennis, swimming, and yoga are the activities she is working towards doing regularly.
The physiotherapy she received was not the conventional kind. The rheumatology physiotherapist helped her identify personal triggers and design an exercise programme specifically adapted to her condition – an approach that is very different from treating a mechanical injury.
Catherine’s advice for anyone who recognises their story in hers
Her biggest regret is not pushing for a diagnosis earlier. The combination of psoriasis, long-standing back pain, bowel symptoms, and joint pain in a young person is a pattern that should prompt investigation – but only if all of those symptoms are communicated together, clearly.
Her practical advice:
- Keep a pain diary. Inflammatory pain is unpredictable and varies day to day. If you only describe how you feel in the appointment, you will miss the full picture. Write down when the pain occurs, what it feels like, and what else was going on.
- Learn the language of pain. Reading about conditions similar to what you might have – and finding the words that describe what you feel – helps you give doctors the information they need. A “dull ache in the sacroiliac joint that disturbs sleep” means something specific to a clinician.
- Report everything, not just the main complaint. Psoriasis, bowel changes, nail changes, ankle swelling – these might seem unrelated. They might not be.
- Seek a second opinion if nothing is clicking. If you have a consistent cluster of symptoms and are not getting answers, asking to be seen by someone else is entirely reasonable.
A note on axial spondyloarthritis
Axial spondyloarthritis is an inflammatory condition primarily affecting the spine and sacroiliac joints. It is estimated to affect around 1 in 200 people in the UK, and is significantly under-diagnosed – particularly in women, in whom it tends to present differently and be recognised later than in men. It is associated with psoriasis, inflammatory bowel disease, and uveitis (eye inflammation). Early diagnosis and appropriate treatment significantly improve long-term outcomes.
If you have had persistent back pain since a young age – particularly if accompanied by morning stiffness, fatigue, skin changes, or bowel symptoms – it is worth raising the possibility of an inflammatory cause with your doctor.
If you are experiencing persistent joint pain, back pain, or unexplained fatigue and would like a clinical assessment, the LBSM team can help.
Get in touch at lbsm.co.uk/booking
Listen to the full episode below ↓
