Cure4CF Update

Understanding Pain in Cystic Fibrosis: Why it Matters

Professor Jodie Simpson, Head of Research, Cure4CF

Pain is a complex and deeply personal experience. It involves both physical sensations and emotional responses, acting as the body’s warning system when something isn’t right. While pain is common in many chronic conditions, it has historically been under-recognised and under-discussed in cystic fibrosis (CF).

Emerging research is now changing that narrative — highlighting pain as a significant issue that deserves routine attention in CF care.

Pain Is Common in CF

Pain in CF can arise from many sources. It may be linked directly to symptoms of the disease, such as lung or gastrointestinal issues, or it may result from treatments and medical procedures that are part of daily CF management. Regardless of the cause, pain can have a profound impact on quality of life, wellbeing, and the ability to participate fully in work, study, and social activities.

Research has shown that disease-related pain is reported by more than three-quarters of adults living with CF, making it far more common than many people realise.

New International Focus on Pain Management

In response to growing evidence, the Cystic Fibrosis Foundation (CFF) in the United States convened an expert panel to develop guidance on pain management in CF. In late 2024, the panel published 13 recommendations designed to support CF care teams in recognising and managing pain more effectively.

Key recommendations include:

  • Routine screening for pain in people with CF
  • Ongoing education for CF care teams to improve pain recognition and management
  • Acknowledging pain as a factor that can influence both physical and mental health outcomes

This marks an important step forward in recognising pain as a core component of CF care — not something to be accepted as “just part of the disease.”

Pain, Mental Health, and Health Outcomes

Pain doesn’t occur in isolation. Studies show that experiencing pain is associated with:

  • Increased risk of anxiety and depression
  • Reduced daily functioning
  • Challenges with work, education, and social participation

Importantly, pain has also been linked to increased mortality risk, independent of disease severity. This highlights just how critical it is to address pain early and proactively.

New Australian Research: How Does Pain in CF Compare?

In 2025, important Australian research explored how pain experienced by adults with CF compares with pain in the general population.

The study:

  • Surveyed 117 adults living with CF
  • Compared results with 89 age- and gender-matched adults without CF
  • Assessed pain prevalence, severity, frequency, and its impact on daily life and mental health

The findings were striking:

  • 69% of people with CF reported experiencing pain, compared with around 20% of people without CF
  • Pain was often experienced almost daily
  • The most common pain locations included:
    • Headaches
    • Joint and back pain
    • Gastrointestinal pain

The study also highlighted a bidirectional relationship between pain, mental health, and daily functioning — meaning pain can worsen mental health and daily activity, which in turn can impact pain.

Perhaps most concerning, pain was frequently under-recognised and poorly managed by health care teams.

Why This Matters

Pain is not just a symptom — it’s a signal. Recognising and addressing pain in CF is essential for improving overall health, wellbeing, and quality of life.

This growing body of research reinforces the need for:

  • Open conversations about pain between people with CF and their care teams
  • Routine pain screening as part of standard CF care
  • Integrated approaches that consider physical pain, mental health, and daily functioning together

At Cure4CF, we believe research like this plays a critical role in shaping better care and better outcomes for the CF community.

Pain in Cystic Fibrosis: New Research, New Conversations

Pain is a common — but often overlooked — part of living with cystic fibrosis (CF).

New Australian research published in 2025 found that almost 70% of adults with CF experience pain, compared with around 20% of people without CF. For many, pain occurs almost daily and can affect physical health, mental wellbeing, and daily life.

Common pain types reported included headaches, joint and back pain, and gastrointestinal pain. Importantly, the study highlighted a strong link between pain, mental health, and daily functioning — and found that pain is often under-recognised and poorly managed in CF care.

What This Means for People with CF

💬 Your pain matters — it’s not “just part of CF”
🩺 Pain should be talked about and assessed routinely
🧠 Pain and mental health are closely linked — support for both is important
🤝 You deserve care that recognises the full impact of pain on daily life

If you’re living with CF and experiencing pain, you’re not alone — and you shouldn’t have to manage it in silence. Talking openly with your CF care team is an important step toward better support and better quality of life.

At Cure4CF, we’re committed to supporting research that improves understanding, care, and outcomes for people living with CF.

 

READ THE ORIGINAL RESEARCH PAPER HERE