5 Ways to Manage Breathlessness and Anxiety in IPF

“Shortness of breath is one of the most challenging symptoms of IPF and can cause significant anxiety,” says Jamie Garfield, MD, a medical spokesperson for the American Lung Association and a professor of thoracic medicine and surgery at the Temple Lung Center at Temple University Hospital in Philadelphia. “Anxiety is highly prevalent among patients with idiopathic pulmonary fibrosis, affecting up to 40 percent of individuals, but multiple nonpharmacologic approaches can help improve breathing and reduce anxiety.”

Pursed Lip Breathing

• Inhale slowly through your nose with your mouth closed for about two seconds. It doesn’t have to be a deep breath.
• Next, pucker or purse your lips together and as if you’re going to whistle or kiss.
• Then exhale very slowly through your mouth, keeping your lips pursed. Take four or more seconds (twice as long as you inhaled) — it sometimes helps to count the seconds.

Diaphragmatic or Belly Breathing

“Diaphragmatic breathing is often very helpful for people with IPF,” says Anna Gersten, MD, the director of the Breathlessness Clinic at Johns Hopkins Medicine in Baltimore. “This means focusing on the diaphragm as a very large breathing muscle and ignoring all the other muscles. Patients imagine the diaphragm going down as they breathe in and rising as they breathe out.”

• Sit or lie down in a comfortable place.
• Place one hand on your upper chest and a hand on your stomach, just below your rib cage.
• Breathe in slowly through your nose for about 4 seconds. You should feel your stomach expand and your hand move outward. Conversely, the hand on your chest should remain still.
• Now hold your breath for 2 seconds.
• Next, breathe out very slowly through your mouth.

Box Breathing or 4-4-4 Breathing

• Inhale slowly through your nose for 4 seconds.
• Hold your breath for 4 seconds.
• Breathe out slowly through your mouth for 4 seconds.
• Hold your breath after exhaling (lungs empty) for 4 seconds.

4-7-8 Breathing

• Inhale while slowly counting to 4.
• Hold your breath for a count of 7.
• Exhale while you count to 8.

Gentle mindfulness exercises, repeating a simple mantra, saying a prayer, or using any grounding practice that is comfortable can help you relax and ease your breathing. It is helpful to first review exercises with your provider, so you feel confident practicing them on your own.

“Anxiety often makes breathlessness worse, creating a cycle that's hard to break,” says Garfield. “Relaxation techniques can help, but there is no one activity that works for all. Patients may consider meditation, cognitive behavioral therapy, music, yoga, and many other activities.”

• Meditation This is a mind-body practice where you focus or clear your mind to achieve a clear, emotionally calm, and stable state. There are many ways of meditating and they use a variety of mental and physical techniques. Research shows that people who meditated for 3 or more years had lower resting respiratory rates and were able to hold their breath longer.

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• Mindfulness This is a simple type of meditation where you pay attention to the current moment. This is done without reacting to it or judging it. Mindfulness has been found to decrease anxiety and depression in people with chronic lung disease. It may also be combined with other modalities, such as cognitive behavioral therapy and breathing exercises.

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• Yoga It is a practice that combines physical exercises, breathing techniques, and meditation. Yoga can help improve the health and happiness of those who practice it regularly. Regular practice has been shown to reduce stress, improve health, and improve breathing control.

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• Visualization Studies have shown that imagery or visualization can help the mind and body relax, and help with anxiety, stress, and pain.

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   Visualization can be done by thoughts alone or being guided through it by another person. Dr. Gersten finds visualization to be very useful for patients who are anxious. “My favorite is a guided visualization because it lets you engage all five senses and fully immerse the person,” she says. As an example, Gersten describes a recent experience with a patient in respiratory distress who had just returned from a very enjoyable beach vacation. She asked him to close his eyes and “return to the beach,” and walked him through seeing and smelling the ocean, listening to the sounds, and so on. “Using each of the senses in a positive way can help someone step out of a very difficult moment and find their footing again,” says Gersten. “As we went through this exercise, I watched his heart rate come down, his oxygen level go up, and his body relax. I encourage people to pick their own ‘place’ so they can practice this on their own.”
• Grounding Exercises These are simple techniques designed to help both your mind and body relax.

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   They are also helpful in reducing anxiety, stress, and depression. Gersten uses a simple grounding exercise called “see the rainbow.” Patients are given a rainbow card and then are asked to look at each color, one at a time, and find something in the room that matches it. “The goal is to focus only on that task until they have gone through each color of the rainbow,” she says. “These [exercises] help calm the nervous system, reduce panic, and bring people back to the present moment so they can breathe more easily and make clearer decisions about what needs to happen next.”
• Distraction Sometimes relaxation can be as simple as adjusting your attention, says Giuliana Cerro Chiang, MD, an assistant professor in the department of pulmonary, critical care, and sleep medicine at Yale School of Medicine in New Haven, Connecticut. “Start counting, recite phone numbers — anything to distract your mind,” she says. “Focus on something else, even like doing a puzzle or watching television — basically anything that distracts you.”

“Patients with IPF need to think about saving energy for activities that matter most,” says Garfield. “Some strategies include planning ahead, pacing yourself, organizing your space, using assistive devices, and asking for help.”

“If you always walk two miles, it’s okay to walk one mile if you’re feeling tired,” says Dr. Cerro Chiang. “Don’t neglect the signs your body is telling you.”

• Planning Decide your goals and activities for the day and plan break times. Importantly, consider what part of the day you are most energetic, and try to plan activities around that time window.
• Pacing Slow down your pace, as this will take less energy. Take time each day to relax, and break down large tasks into smaller ones.
• Prioritizing Decide which activities are the most important and do those first. Concentrate on your highest priority tasks and then go down your list.
• Positioning Your body’s position can affect your breathing and energy. Bending or reaching excessively can lead to shortness of breath and fatigue. Try to avoid standing in one position for any length of time as this can be tiring.
• Permission Give yourself permission to do things differently. Be patient with yourself.

“Pulmonary rehabilitation has been shown to meaningfully increase exercise capacity, reduce breathlessness, and improve quality of life in IPF patients,” says Garfield. “It is one of the most effective treatments for improving exercise capacity and quality of life in people with IPF.”

She explains that it is a comprehensive program that includes “exercise training tailored to your abilities to improve strength and stamina, education about your disease and how to manage symptoms, breathing techniques taught by respiratory [specialists], nutritional counseling to maintain healthy weight and energy, and emotional support to help cope with the challenges of living with IPF.”

While not a formal part of pulmonary rehab, Garfield also suggests non-pharmacologic therapies. “Breathlessness and anxiety in IPF can be mitigated by patient support groups, as connecting with others who have IPF can reduce feelings of isolation,” she says. “Also helpful are palliative care services, focusing on symptom relief and quality of life, which is appropriate at any stage of disease, and mental health support to manage anxiety and depression that often accompany chronic lung disease.”

Anxiety or breathlessness can initially be caused by low oxygen. “If you can check your oxygen level, that is the first thing to do if you feel anxious,” says Cerro Chiang. “Sometimes patients are in denial, that they may be getting worse and so minimize the symptoms. You may be getting anxious because your body is trying to tell you something is wrong. If your oxygen saturation is below 90 percent, call your doctor.”

Also important is checking your equipment. “The proper amount of oxygen may not be reaching you if there is an equipment failure,” she says. “Check the tank, make sure the battery is on, that you have power, and so on.”

Cerro Chiang also emphasizes that you should notify your doctor if there is a big change in your saturation level, even if it is above 90 percent. “For example, if you are always at 98 percent and now suddenly you are staying at 92 percent, your doctor needs to know this,” she says.

Gersten notes that she generally only recommends increasing oxygen if a patient is truly hypoxic, which is when there is low oxygen in the body tissues, and that is driving the breathlessness. “I encourage patients to keep a pulse oximeter, and I prefer that a caregiver put it on and help assess the patient,” she says. “Asking someone who is already distressed to interpret their oxygen numbers and adjust their oxygen can create even more stress at a time when the goal is to help them feel calmer and more in control.”

• Breathlessness and anxiety are linked together in a “dyspnea-anxiety cycle,” where each can fuel or worsen the other.
• There are many nonpharmacological interventions that can be used to reduce both anxiety and breathlessness.
• Interventions can be as simple as slowing down and pacing yourself or using breathing techniques.
• Pulmonary rehabilitation is recommended for people with IPF as it can improve physical function, breathlessness, mood, and quality of life. Oxygen therapy may also be needed at certain times, such as during exercise.