Pain is a common issue for many people with cystic fibrosis. About 77% of adults and 42% of children say they experience pain related to their CF. Doctors describe pain based on how long it lasts:
- Acute: Short-term pain that lasts one month or less and is often caused by an injury
Chronic : Long-term pain that lasts longer than 3 months
What Causes Pain?
People with CF can experience a range of different types of pain, including:
- Chest-wall pain
- Sinus pain
- Bone and joint pain
- Pain in organs, such as the gallbladder, liver, or
pancreas - Digestive (gastrointestinal) pain
- Nerve pain, called neuropathy, usually associated with CF-related diabetes
- Pain from worsening lung symptoms, called
pulmonary exacerbations - Pain from invasive tests and procedures
- Emotional pain, including trauma and post-traumatic stress disorder (PTSD), grief, depression, and anxiety
How Can Pain Affect People With CF?
Pain can have negative effects on people with CF, including:
- Limited daily activities
- Limited social life
- Problems sleeping
- Problems concentrating
- Depressed or anxious mood
- Difficulty sustaining daily CF care
- Increased risk for lung infections (pulmonary exacerbations)
- Increased risk for death
"I’m starting to have pain in my hip at 24 years old, and there’s not much I can even do about it right now. But I’m certainly not gonna quit. This new development in my health is still very new to me, almost to the point where I don’t think I’ve even properly processed it yet." — Lin Marando, adult with CF, from the CF Community Blog
Pain and mental health affect each other. For example, anxiety can make pain worse.
How Can I Manage Pain?
Your CF care team can work with you to develop a plan to decrease pain and improve function. Members of your care team may also work with other specialists, including pain or palliative care teams, to provide the best pain management plan for you.
Your care team may ask you about any pain you experience as part of your regular care center visits. If they don’t ask, you should tell them about any pain you are experiencing. They can then assess your pain and work with you to develop a plan to manage it.
Because pain affects your mood and your mood can affect your pain, they will also ask you about your mood and any symptoms you may be experiencing, such as anxiety or depression. The goals of pain management will be to:
- Decrease the amount and severity of pain you experience
- Help you increase your ability to take part in normal daily activities
- Improve your quality of your life
When coming up with a plan to manage your pain with your care team, you should discuss your goals, what may have worked for you or didn’t work in the past, and the risks and benefits of each treatment.
When describing pain to your care team, be as specific as possible. Be sure to mention:
- What type of pain it is (muscle, joint, sinus)
- Where you feel the pain
- When it began
- How intense it is
- How long it lasts
- If it interferes with your daily activities and which ones they are
- If it affects your mood and how
- If anything makes it worse
- If anything improves it
Words to use to describe pain include:
- Sharp
- Dull
- Aching/achy
- Shooting
- Throbbing
"As I sit on the bathroom floor, slouched over with one hand holding my nebulizer in my mouth and my head resting in the other, I take deep breaths as albuterol fills my lungs. Except the breath doesn't come easily. It's consuming all my energy, causing pain in my chest, and causing stressful cough attacks." — Madison Madrid, adult with CF, from the CF Community Blog.
Effectively describing your pain can help your care provider understand it better and recommend tests or treatments. Treatments for pain include:
- Physical therapy
- Behavioral treatments, such as cognitive behavioral therapy (CBT), which can help you identify and change unrealistic or unhealthy thoughts, emotions, and behaviors
- Medication, including acetaminophen (such as Tylenol), nonsteroidal anti-inflammatories (such as Advil, aspirin, and Aleve), corticosteroids, and opioid medications
- Integrative therapies, such as movement therapy like yoga, mind-body therapies like relaxation and hypnosis, massage, Reiki, acupuncture, acupressure, and aromatherapy
If the treatments your care team recommends do not relieve your pain, they may refer you to a pain specialist.
