The symptoms of idiopathic pulmonary fibrosis (IPF) affect not only your lungs, but also other parts of your body. Such symptoms can vary in severity between individuals with IFP. Sometimes you may even experience an acute episode, where symptoms quickly worsen and last for days to weeks.

Looking for patterns in your symptoms can help your doctor identify better treatments for your condition. Plus, this will allow you to manage your IPF better.

Shortness of breath and its progression

Shortness of breath (also known as dyspnea) is often the first reported symptom of IPF, according to the National Heart, Lung, and Blood Institute. At first, you might notice it happening only occasionally, especially during times of exertion, such as when you exercise. But as your IPF progresses, you’ll likely experience shortness of breath more frequently throughout the day — even when you’re laying down or resting.

Keeping track of the severity and progression of your shortness of breath is an important indicator of the amount of lung scarring your IPF is causing. It can also give your doctor insight about your overall respiratory health.

When tracking the symptoms of your shortness of breath, be sure to indicate when the symptoms start and when they end. Also, take note of your activity level and what you were doing while experiencing these symptoms.

Identifying other common symptoms of IPF

While shortness of breath is the most common IPF symptom, you may also experience other symptoms, including:

  • dry cough
  • gradual weight loss from loss of appetite
  • pain in your muscles and joints
  • clubbed fingers and toes
  • extreme fatigue

Just as with shortness of breath, you’ll want to make note of the context surrounding your experiences with these other IPF symptoms. Track when and where you experience these symptoms, and what you were doing when they began.

Tracking is empowering

Tracking your symptoms also puts you in control of your IPF management. This can be quite empowering, especially when you’re facing a disease that has no single identifiable cause and, unfortunately, no cure.

When you go to your next doctor’s appointment, be sure to take your symptom journal with you and take more notes as needed. Doing so will help you feel confident while exchanging information with your doctor.

Your symptoms can change your treatment plan

Mild symptoms may be controlled with medications that reduce inflammation and flare-ups. You may also need oxygen therapy to help improve shortness of breath during daily activities.

If you notice your symptoms getting worse, your doctor may need to modify your treatment plan. This could include oxygen therapy during times of rest to improve the function of your lungs. Your doctor may also suggest pulmonary rehabilitation.

If you experience a stuffy nose or fever, see your doctor immediately. With IPF, even the most seemingly harmless illnesses can lead to issues with your lungs. This includes the common cold and the seasonal flu. Your doctor will likely recommend that you take extra care in staying away from others who are sick. You will also need an annual flu shot.

The most severe cases of IPF may require a lung transplant. While this won’t fully cure your condition, it can help resolve your symptoms and extend your prognosis.

Tracking can help ward off complications

Since there’s currently no cure for IPF, one of the main focuses of treatment is to prevent complications. These include:

  • respiratory failure
  • pneumonia
  • pulmonary hypertension
  • lung cancer
  • pulmonary embolism
  • heart failure

These complications are serious, and many can be life-threatening. To prevent them, you must first stay on top of your symptoms and touch base with your doctor if you think your condition is worsening. Your doctor will be able to implement emergency strategies to stop further scarring of your lungs and subsequent oxygen depletion.

How to track your symptoms

While you may understand the importance of tracking your IPF symptoms, you might be wondering the best way to go about doing this.

If you prefer handwritten logs, then you’ll likely be more successful tracking your IPF in a traditional journal. Typing your notes may also help so long as you’re able to keep the information handy.

If you prefer logging symptoms on your smartphone, consider an easy tracking app such as MyTherapy.

The takeaway

Tracking your IPF symptoms can help provide insights into your condition for both you and your doctor. Everyone’s case is unique, so there is no one-size-fits-all outcome or treatment plan for this condition. Another reason why tracking your symptoms is imperative is because IPF has no identifiable cause compared with other types of pulmonary fibrosis.

Touch base with your doctor regularly to go over your notes. This way, you and your doctor can tweak your treatment plan as needed.