Symptoms
Living with interstitial lung disease (ILD), including pulmonary fibrosis (PF), presents unique challenges. Recognizing the early symptoms can lead to earlier diagnosis and better management of the disease.
Common Symptoms
Shortness of Breath (Dyspnea)
Difficulty breathing, especially during physical activities. As the disease progresses, even simple tasks like dressing or talking can become challenging.¹
Chronic Dry Cough
A persistent, non-productive cough that doesn’t improve over time.¹
Fatigue
Extreme tiredness or lack of energy, even after minimal activity.
Symptoms often worsen over time, though the rate of progression varies by individual. If you or a loved one are experiencing these symptoms, it’s important to consult a healthcare provider for proper diagnosis and management.
Many patients initially mistake their symptoms for other conditions, leading to a delayed diagnosis. Common misconceptions include:
“I’m just getting older.”
Assuming breathlessness is just part of aging.
“I need to lose weight.”
Thinking weight gain is the primary cause of fatigue.
“I’m just out of shape.”
Attributing shortness of breath to lack of exercise.
Additional Symptoms to Be Aware Of
- Unexplained Weight Loss: Losing weight without changes in diet or activity levels.
- Clubbing of Fingers or Toes: Enlarged or rounded fingertips or toes due to low oxygen levels in the blood.²
- Muscle and Joint Aches: General discomfort or pain in muscles and joints.
- Chest Discomfort: A feeling of tightness or discomfort in the chest.
Coexisting Conditions
Many patients with pulmonary fibrosis have additional health conditions, called co-existing conditions. These conditions require coordinated treatment with your healthcare team.
Why This Matters
Managing both pulmonary fibrosis and coexisting conditions requires a multi-disciplinary approach. Treatment for one condition can affect another, so working closely with your healthcare team is essential to ensure the best possible care.
What Does It Feel Like to Live with PF?
Many PF Warriors describe their experiences in vivid terms:
“It’s like breathing through a drinking straw, all the time. It isn’t too hard to do while sitting down but try climbing the stairs quickly while breathing through a straw!”
“Having PF means being fatigued all the time. It’s not a ‘normal tired’—sleep doesn’t make it go away.”
“When I am sitting still, I sometimes forget about pulmonary fibrosis. However, when I stand up, leave the shower, or walk out to get the mail, I feel like I’m underwater trying to breathe.”
Common Coexisting Conditions
Gastroesophageal Reflux Disease (GERD)
Acid reflux can contribute to lung irritation and may worsen PF symptoms.
Conditions like rheumatoid arthritis or scleroderma can be linked to PF and may require specialized treatment.³
High blood pressure in the lungs can develop as a complication of PF, making breathing even more difficult.⁴
Next Steps
If you recognize these symptoms in yourself or a loved one, take action today.
Prepare for your medical evaluation
Start your list of questions for your next medical appointment. Pulmonary fibrosis can be difficult to diagnose, but early intervention may help slow disease progression and potentially increase survival.
Connect with a support community
PF Warriors provides resources, education, and a space for patients and caregivers to share experiences.
Stay informed
Understanding Pulmonary fibrosis and available treatments empowers you to make informed decisions about your health.