Treating pain beyond inflammation
Developed by the British Pain Society in collaboration with the British Society for Rheumatology. With huge thank yous for the substantial contributions from Tim Atkinson, Jacqui Clinch, Martin Hey, Tom Shelton, and Lindsay Turner (British Society for Rheumatology).
The treatment of inflammatory arthritis has changed dramatically over the past two decades. Disease-modifying anti-rheumatic drugs (DMARDs) and biologic therapies have transformed disease control, yet pain remains one of the most common reasons people seek healthcare. Even when inflammation is well controlled, many people continue to experience persistent pain, fatigue, poor sleep and reduced function, affecting work, relationships and everyday life.
The recently published British Society for Rheumatology (BSR) Guideline for Pain Management in People with Inflammatory Arthritis reflects this changing landscape, promoting a holistic, person-centred approach that combines disease control with rehabilitation, education and shared decision-making.
The question is no longer simply, “Is the inflammation controlled?” but “What matters most to this person?”
Living with pain: the patient experience
Daily, chronic, and persistent pain are unlike any other symptoms. Not only are people dealing with physical symptoms, they are also facing the daily consequences of living with pain.
As Tim Atkinson, who lives with psoriatic arthritis, explains:
Patients mask; we develop coping strategies. We learn to live with it. We have to. So sometimes, when we present, we may not appear to be suffering as much as we claim. But the pain remains.
Tim describes how, despite having an identifiable inflammatory condition that can be seen on scans and blood tests, there have still been times when his experience of pain has been questioned and denied. As Margo McCaffery famously stated, pain is "whatever the experiencing person says it is, existing whenever and wherever the person says it does."
Knowing our Bayesian brain may be over-protective, designed as it is to keep us alive, and accepting that movement, though uncomfortable, is beneficial are two good starting points.
Understanding persistent pain in inflammatory arthritis
Pain is the most common reason people with inflammatory arthritis see a rheumatologist and patients consistently rate pain as one of their highest priorities.
Understanding of causes and underlying mechanisms of pain in people with rheumatological conditions is rapidly changing.
With the advent of more effective disease modifying drugs, joint inflammation and associated nociceptive pain is becoming a more treatable cause. Unfortunately, the long-term prognosis for chronic pain in this population remains unfavourable, even after inflammation is suppressed.
Pain is often associated with other challenges including fatigue, anxiety, low mood, poor sleep, memory and concentration difficulties, dizziness and nausea. A holistic approach to those who suffer these pain-associated disabilities, including psychological and physical therapy strategies, is essential.
In people with RA, fulfilling fibromyalgia classification criteria is highly suggestive of central pain augmentation. In addition to worse psychological health and poorer sleep, these patients have a greater pain sensitivity, report more widespread pain and display multiple tender points. Furthermore, some RA pain qualities share characteristics with neuropathic pain (sharp, shooting and burning). Each of these characteristics suggests key roles for central neuronal processing in RA pain and potentially directs future treatments.
As Jacqui Clinch, Consultant Paediatric Rheumatologist, noted:
Identifying underlying pain mechanisms is critical to determine when anti-inflammatory and disease-modifying treatments should be escalated and when rehabilitation, psychological therapies, and other biopsychosocial approaches can provide symptomatic analgesia and improve quality of life in a more targeted manner."
Why rehabilitation still matters in the biologic era
Whilst effective biologic therapies have changed inflammatory arthritis management, they have not changed many of the challenges faced by those seeking to benefit from them. The time taken for inflammatory arthritis to be recognised, diagnosed, and for people to reach effective therapy can have detrimental impacts on exercise, employment, social roles, and relationships.
Regaining what has been lost can be as challenging for those with managed inflammatory arthritis as it is for the general population. Furthermore, these medications do not immunise people against the common and understandable misconceptions that exist around different levels of pain and fatigue.
“Hurt not meaning harm” and “recovery not being a smooth road” are messages that are as relevant now as they have ever been.
Tom Shelton, Advanced Practice Physiotherapist in Pain Management, noted “Rehabilitation in this space is not about fixing a discrete problem; it is about equipping people with the information, confidence and companionship to regain what is lost.”
Biologic therapies have raised expectations for recovery, giving people hope of regaining activities once considered out of reach. Returning to intense sport and activity is no longer out of the question, nor is living full lives.
Rehabilitation should increasingly extend and engage beyond the clinic, working alongside exercise professionals, sports clubs and community resources. Connecting people with shared experiences of disease also enables them to share practical strategies appropriate for different needs and to support one another.
However, social media and the nature of human beings can also create environments that are dispiriting and present perfection as the expectation. Rehabilitation professionals would do well to consider this landscape.
What successful rehabilitation looks like
Rehabilitation should not begin once disease control has been achieved - it should be part of care throughout the person's journey.
Consultant Physiotherapist in Pain Management, Martin Hey, believes successful rehabilitation is measured by confidence, function and independence, not simply pain reduction.
"A successful physiotherapeutic intervention enables patients to develop confidence to trial a variety of activity and self-management skills to find the best fit for them and their current circumstances and needs; to understand their own condition and effectively articulate their care needs to others; to maintain activity as best able through better days and very challenging days alike; and to see self-management as a lifestyle change under constant fine-tuning as opposed to a set of changes that become fixed and inflexible."
Martin also reflects on how physiotherapy has evolved:
"Physiotherapy is inherently an active undertaking that had an era of passive care delivery which was undoubtedly well intentioned, but unfortunately disempowered patients, placing the decision making with the medical professional not the patient and delivering short but un-sustained benefit."
The goal of rehabilitation is to help people achieve an acceptable quality of life within their own values and beliefs, even when some level of pain remains.
Martin also reflects on how physiotherapy has evolved:
Physiotherapy is inherently an active undertaking that had an era of passive care delivery which was undoubtedly well intentioned, but unfortunately disempowered patients, placing the decision making with the medical professional not the patient and delivering short but unsustained benefit.
The goal of rehabilitation is to help people achieve an acceptable quality of life within their own values and beliefs, even when some level of pain remains.
What does good pain management look like?
For clinicians working in primary and community care, the new BSR Guideline for Pain Management in People with Inflammatory Arthritis provides an opportunity to rethink how pain is assessed and managed.
Persistent pain should not automatically be interpreted as evidence of ongoing inflammation. Clinicians should consider the wider factors that may influence a person's experience.
A holistic assessment should explore:
- current disease activity alongside the individual's pain experience
- sleep quality
- mood and anxiety
- fatigue
- functional ability
- beliefs about pain and movement
- personal goals and priorities
The guideline highlights the importance of validation, empathy and understanding patient-centred goals during assessment.
As guideline co-chair Dr Nicholas Shenker explains:
Pain is individual. People know whether they're living with an acceptable level of pain or not. If pain is not acceptable, you need to assess it more holistically: ask about sleep, mood, function and fatigue.
Physical activity, rehabilitation, education, psychological support, sleep support, weight management, and peer support all have a role alongside optimal inflammatory disease control.
Professor Yeliz Prior highlights this important shift:
Pain in inflammatory arthritis is not solely a biomedical issue and cannot be managed effectively through medication alone. High-quality pain care must incorporate evidence-based non-pharmacological interventions as a core component, not an optional extra.
Keeping pain visible in service improvement
Improving pain management also depends on how services are designed and connected across the patient pathway.
The Getting It Right First Time (GIRFT) Chronic Pain Programme is one of NHS England's national improvement programmes, working to improve chronic pain care. Through reviews across Integrated Care Boards (ICBs), the programme is identifying variation in pain services and highlighting opportunities to improve access, integration and personalised care across primary, community, secondary, and tertiary services.
Emerging findings reinforce the BSR guideline: effective pain care requires coordinated pathways, multidisciplinary working and access to rehabilitation, education, and support throughout the patient journey.
One clear message is emerging: chronic pain, whether primary or secondary to conditions such as inflammatory arthritis, should be recognised as a strategic population health priority. Keeping pain visible within service design and quality improvement will help ensure people receive holistic, person-centred care, not only to control disease but to improve function, participation and quality of life.
Success in care should not be measured solely by disease remission, but by whether people can participate in work, family life and the activities that matter most.
The BSR Guideline for Pain Management in People with Inflammatory Arthritis reinforces that persistent pain is not necessarily a sign of uncontrolled inflammation. Instead, it calls for a broader approach combining disease control with rehabilitation, education and person-centred care.
Starting with the guideline summary sheet is a practical first step towards more holistic assessment, better shared decision-making and rehabilitation-focused care.
The goal is to help people with inflammatory arthritis live well, function well, and participate in the lives they value.