Opioids for Cystic Fibrosis Pain: Benefits, Risks, and Concerns
Research shows that more than 75 percent of adults with cystic fibrosis (CF) live with chronic pain. Many use prescription opioids to help reduce this pain. In 2021, researchers developed a study to better understand how people with CF manage their pain and how opioids factor into treatment.1
The study researchers sent online surveys to adults with CF. The survey asked study participants about their experiences with pain and how they manage it.
The questions – which included multiple choice and open-ended questions – gathered information on 4 key areas:1
- Demographics – Age, sex, marital status, etc.
- Pain characteristics – Where in the body they experience pain, such as the chest, joints, head, sinus, or abdomen
- Pain communication – How they communicate their pain to doctors
- Management strategies – What drugs they use for pain
The researchers then analyzed the answers. Here is a look at some of the insights they gathered.
Opioids are effective at managing pain in people with CF
The majority of people were satisfied with how opioids helped manage their pain. Of the people involved in the study:1,2
- 70 percent believed their pain was CF-related
- 68 percent said pain affected their daily life “very often” or “always”
- 86 percent experienced pain 4 or more times per week
- 73 percent reported that pain affected their mood “moderately” to “a great deal”
Fear of addiction, drug tolerance, and stigma remain
Results show the study participants were generally pleased with how opioids helped with pain management. However, they had underlying concerns of the possibility of addiction, drug tolerance, and being unfairly judged by the healthcare system. These were noted in people’s open-ended responses.1,2
One woman, age 29, admits that her fear of becoming addicted to opioids makes her only take opioids as a “last resort,” saying:1
“I do not take this (tramadol) all the time, I only take this when the pain is debilitating and makes me cry or I cannot move from the stiffness of my joints causing me severe agony. I do not want to become addicted.”
Bearing the pain
One woman’s fear of addiction prevents her from taking opioids at all:1
“At times it works, and at times it doesn't. I am so afraid of being addicted to them that it keeps me from taking them when I need them and I just bear the pain.”
Shame around relying on opioids was a common theme as well. According to one 28-year-old man:1
“We are scared to tell the doctors we're in pain and need to do something about it because of the fear of being labeled a pill seeker. So, it becomes a very bottled-up mess that I truly believe is under-reported and definitely under-treated. Which is a major shame, because when properly relieved of even just some of the pain makes life so much more enjoyable.”
Assessing overall benefits and risks
In people with CF, chronic pain has been linked to poor health outcomes, higher rates of depression, and lower quality of life. However, the study found that just 58 percent of people reported having a chronic pain diagnosis from a doctor.1
In other words, many people with CF are choosing not to receive formal diagnoses that can help treat their chronic pain because of fear of stigma, financial concerns, or other reasons.2
Alternative therapies to pain management
While opioids help with pain management, adults with CF are clearly concerned about the negative impacts of long-term opioid use. Many expressed interest in learning more about alternative pain management strategies, such as acupuncture and physical therapy.1,2
More research is needed to develop better, more sustainable pain management strategies for CF and to explore alternative therapies that do not require the use of opioids. This study proves we need more data to understand how opioids can best be used for people with CF.1,2
Cystic fibrosis affects every aspect of life. Will you tell us about the realities of CF in our survey?