It’s not uncommon for people with chronic pain but no clear injury to deal with doubting physicians.
Katie Clark, a retired middle school English Language Arts teacher in Michigan with fibromyalgia, said she has been lucky with her doctors. Fibromyalgia causes chronic pain that doctors think arises from amplified pain signals in the brain and spinal cord.
“I’ve been fortunate to have doctors that mostly believe the pain I feel is real,” she said. But even then, “They don’t fully understand that it affects you emotionally, physically, your energy level, your ability to think straight. That is difficult to communicate to doctors.”
In the past, healthcare providers have ascribed to a narrow definition of pain, viewing it mainly as an experience that arises from physical damage to the body. But research over the past few decades has shown that pain doesn’t always come from visible injuries to the skin, muscle, bones or organs, and its effects can spread beyond the site of tissue damage.
This month, the International Association for the Study of Pain (IASP) announced a revision to the official definition of pain for the first time in 40 years. A task force from the IASP developed this new definition to better acknowledge pain experiences of people who can’t readily communicate or people with chronic, sometimes invisible pain.
“By defining [pain] clearly, we hope that stakeholders such as policymakers and insurance carriers understand that pain is not just a symptom,” said Srinivasa Raja, director of pain research, division of pain medicine, and professor of anesthesiology and critical care medicine at Johns Hopkins University, and lead author on the publication of the IASP’s new definition. “It has complex effects on function as well as social wellbeing.”
In 1979, the IASP published its first definition of pain, which has been adopted by healthcare providers and researchers around the world, as well as the World Health Organization. It defined pain as: “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.” In an accompanying note, the authors added that when people report pain without any physical damage to bodily tissues, “usually this happens for psychological reasons.”
But over the next decades, it became clear that pain could arise from sources other than physical tissue damage. “Advances in science and technology and the ability to examine how the nervous system functions have helped us understand this much better,” Raja said. “Tissue injury is not equal to pain.”
In light of the growing body of knowledge surrounding pain and the nervous system, Judith Turner, a clinical psychologist and professor in the department of psychiatry and behavioral sciences at the University of Washington and then president of the IASP, started a task force in 2018 to come up with a more inclusive definition.
After evaluating research and feedback from professionals in the pain field, patients and caregivers, they settled on subtle changes to the original definition: “An unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.”
One of the key changes is the addition of the word resembling, and deletion of the requirement to describe pain. “One of the concerns was the way that was worded may exclude certain vulnerable populations like infants, the elderly, those who have difficulties in communication, or the cognitively impaired,” said Raja.
The task force also added notes that couldn’t fit into a succinct definition to better address the complexities of pain, how it can affect function and social and psychological wellbeing.
“We hope it will be useful at both increasing patients’ and healthcare providers’ understanding of pain,” said Turner.
Penney Cowan, founder and CEO of the American Chronic Pain Association, said the new definition is an improvement, but it’s not something both healthcare providers and consumers can understand. “My take the first time I read it was how many people aren’t going to understand it,” she said. “People with pain read these things. I’d like to see it easier for people with pain to understand.”
Beyond publishing a revised pain definition, Turner said the IASP is working to increase education efforts for clinicians, to show them how to better address the needs of people with pain.
Working with insurance carriers is another way to address those needs. Insurance typically covers drug interventions for pain, but in recent years some have started covering other pain treatments, too. If insurance carriers adopt the language in the new definition, a multifaceted approach might be more accessible to people with pain.
“It would make it more likely that insurers would appreciate the importance of a multimodal approach to pain management,” said Turner.
For Clark, having professionals better understand that pain affects all areas of life and appreciate the need for improved treatments is crucial. “I would hope that there’s more understanding that with someone with chronic pain, [treatment] needs to be multifaceted,” she said.