Support LineSupport GroupsSearchFeedback
Breathlessness can be a frightening and distressing symptom of pulmonary fibrosis. You can learn how to minimise, cope with and manage this symptom - and make a big difference to your quality of life.

The causes of breathlessness

We feel breathless when our muscles sense that they are not getting the oxygen they need. So they send a message via the nervous system to our brain, which tells us to breathe faster and work harder to get more oxygen.

There are many things that can cause breathlessness and it’s a good idea to have your breathlessness assessed by your medical team to make sure that there is no other medical cause. You might have a breathing test, a chest x-ray, blood test or have your oxygen levels checked.

Managing breathlessness

There are a number of things you can do manage your breathlessness:

Don’t overdo it!

It’s likely that you will experience breathlessness when you are physically active. With pulmonary fibrosis, the scar tissue in the lungs slows down oxygen entering the blood.

But if you stop what you are doing, you will notice that your breathing will slow down and you will recover quite quickly. You do, therefore, have some control over your breathlessness.

You will learn very quickly which activities you can manage. This will mean that over time your choice of activities may change. For example, you may still want to spend time walking your dog but may have to delegate cutting the six-foot hedge to someone else!

You can explore the amount you can manage – and increase it – by taking part in a pulmonary rehabilitation programme.

Learn to slow down

If you start out slowly, you’ll be able to sense your breathlessness developing, a bit like a wave building up as it travels into the shore. Learning to sense the wave building up gives you a chance to remain in control. If you stop at this point and allow your breathing to settle, then you can start up again as soon as you feel comfortable.

If you feel in control of your breathlessness you are less likely to panic. Many people with pulmonary fibrosis learn to pace themselves by stopping and starting.

Oxygen

Help may also be at hand in the form of additional oxygen. Many people use oxygen for many years, just like any other treatment. Your healthcare practitioner will be regularly assessing you to see whether you might benefit from oxygen.

Walking aids

A rollator supports your body weight as you walk. There are several different models; you might want to try one with a seat so you can have a rest if needed, or with a basket so you can carry oxygen. You could also experiment with a supermarket trolley when shopping to see if this helps you.

Some people also find carrying a stick provides the support they need, and helps them to feel less uncomfortable about going slowly when they are out and about.

Medication

Drugs can help reduce the sensation of breathlessness. Some of these drugs include small doses of morphine, which can also have side-effects of constipation. Some drugs work by reducing anxiety brought on by breathlessness. Talk to your medical team about drugs that might help.

Using relaxation

It’s not just physical triggers that can bring on breathlessness. When people experience a nervous or anxious situation, they often remember feeling breathless or being unable to speak.

Relaxation is useful for relieving anxiety and managing breathlessness, so try to find what relaxes you. It might be listening to a relaxation tape or app, music, or reading a book. It might just be spending time with your family and friends.

Distraction is also a useful tool to help people relax and forget about their breathlessness. Getting absorbed in something that you enjoy is a good way of switching off.

Fresh air

Opening a window and having cool air circulating can help breathlessness. Likewise, a fan can help to move air and feel refreshing around the face. There is some evidence that using a handheld fan can help reduce the unpleasant sensation of breathlessness.

Breathing exercises

There are also breathing techniques to help you use your lungs more efficiently and to feel in control of your breathing.

For carers, you can also look at the supporting breathlessness resource

Hull York medical school has a useful Guide to living well with breathlessness

Bending and Breathlessness

For practical advice and handy tips on bending, see our managing breathlessness on bending resource www.actionpf.org/information-support/managing-breathlessness-when-bending

“Life goes on, and I will not let my diagnosis dictate my life. Be positive, exercise and enjoy every moment is my philosophy.”

You’ll find related articles on these pages