Aching for Answers: CF-related Pain

Pain is one of the most common experiences in cystic fibrosis—and also one of the most under-discussed. In this episode, Ahmet Uluer, DO, MPH, and Andrea Gavin Becker are joined by Elisabeth (Liz) Dellon, MD, MPH, a pulmonologist and palliative care physician who helped lead the CF Foundation’s pain management guidelines, to explore why pain so often goes unrecognized, under-treated, or minimized in CF care. They discuss the data, which shows that chronic or recurrent pain affects most adults with CF—and Liz explains how pain gets buried beneath packed visit agendas, stigma around treatment, and uncertainty about what kind of pain clinicians are even asking about. Andrea shares what it’s like to live with a constant background hum of pain, how people with CF learn to underrate it, and adds her voice to others with CF on how being disbelieved can feel worse than the pain itself. The conversation reframes pain as more than a number on a scale, looking instead at pain interference, mental health, sleep, menopause, movement, and the cumulative toll of aging with CF. They discuss multimodal and palliative approaches, exercise, non-pharmacologic tools, opioids and stigma, transplant-era trauma, and the role of trust between patients and providers. Also: gas pain intense enough to send spouses into panic; Taylor Swift finding time to fill in as a physical therapist; and why pain deserves a bigger seat at the CF table. The content presented in this podcast is for informational and educational purposes only, and is not intended as medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.