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6 Hidden IPF Warning Signs

Medically reviewed by Ashley Marcin on December 19, 2016Written by Ashley Marcin on December 19, 2016

Idiopathic pulmonary fibrosis (IPF) is a rare and chronic lung disease. A hacking cough and breathlessness are two of the most common symptoms, but there are many other possible symptoms. The word “idiopathic” means there’s no known cause for the disease, which can make diagnosing it difficult. Here are some of the less common signs that you may have IPF, as well as comorbidities and when you should see your doctor.

1. Weight loss

Eating becomes more difficult with IPF. It takes more energy to breathe between bites. For this reason, people with the disease sometimes lose their appetites and in turn, lose weight unintentionally. It’s important for those with IPF to eat a diet filled with nutrient-dense foods. Eating smaller meals throughout the day can also help you maintain a healthy weight.

2. Clubbed fingers and toes

Clubbing of the fingers and toes happens when your body is receiving less oxygen through the bloodstream. Your nails may become wider or rounder in later stages of the disease. Your fingertips may also look swollen and red and even feel warm.

3. Fatigue

The United States Food and Drug Administration surveyed a group of people with IPF, and many explained that fatigue is one of the most difficult aspects of the disease. One respondent said: “On my worst days, coughing will wipe you out for an entire day … Physically, you're exhausted.” Everyday tasks can become much more difficult when breathing is impaired. Frequent coughing can also make you very tired.

4. Sleep issues

For some, coughing with IPF is worse at night. It makes getting restful sleep difficult. After diagnosis, you may also have trouble sleeping due to different treatments. Medications like prednisone, for example, may disrupt your sleep cycle and lead to other side effects, like weight gain or mood changes.

5. Muscle and joint pain

Coughing can also give you aches and pains in your muscles and joints. You can experience anything from headaches to chest pain and tightness. Some people even report localized pain in their lips and tongue.

6. Edema

IPF may cause swelling in your extremities. As the disease gets worse, the right side of your heart has to work harder to pump blood through your blood vessels to the lungs for oxygen. As a result, your heart decreases the volume of blood that it pumps and the blood can back up into other areas of the body, such as the liver, gastrointestinal tract, and most often in your lower legs.

Comorbidities

A comorbidity is the presence of two or more diseases at one time in a patient. One of the most common medical issues that goes hand-in-hand with IPF is gastroesophageal reflux disease (GERD). With GERD, you experience regurgitation, or a backflow, of the contents of your stomach into your esophagus.

Other comorbidities with IPF include:

When to see your doctor

Early diagnosis is key with IPF. The sooner you find out you have the disease, the sooner you can try to slow its progression and ease your symptoms. If you notice shortness of breath or a nagging cough, make an appointment with your doctor.

You may be referred to a lung specialist called a pulmonologist for more detailed evaluation.

Tests that can help diagnose IPF include:

  • chest X-ray
  • lung function tests
  • CT scans
  • blood tests
  • bronchoscopy
  • lung biopsy

Bring a list of questions to your appointment as well as notes on any personal or family medical history you feel is relevant. Though the cause of IPF is unknown, around 1 in 20 people who have the disease discover that they have a family history.

Takeaway

It’s important to communicate with your doctor whenever you’re having symptoms that affect your everyday life. Feeling tired or having aches and pains may not mean anything. In rare cases, they may be hidden signs of a chronic disease like IPF. If you’re not sure if what you’re experiencing is serious, consider keeping a diary to log your symptoms. You can take this information to your doctor to help with a diagnosis.

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