Coping with Breathlessness

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An introduction to breathlessness and its impact

·        Breathlessness in cardiomyopathy is often caused by fluid build-up on the lungs

·        Breathlessness might occur when doing simple activities

·        In more severe cases, breathlessness can occur even when resting, it might be worse when lying down or at night, causing the person to wake up feeling breathless.

What is breathlessness?

Breathlessness is a shortness of breath or the feeling of struggling to breathe. This can be a symptom of heart failure, and is a common symptom of cardiomyopathy. Although it is common during exercise or exertion, when someone feels breathless while resting, this can be due to a build-up of fluid on the lungs. The medical term for this is dyspnoea.

Breathlessness is a key feature of heart failure (HF) caused by cardiomyopathy and forms part of the basis on which a New York Heart Association (NYHA) Functional Classification is made. The NYHA functional classification enables clinicians to classify the extent of heart failure. It places patients in one of four categories according to how limited during physical activity; the limitations/symptoms are in regard to normal breathing and varying degrees in breathlessness.

NYHA Functional Classification

NYHA Functional Classification

Types of breathing patterns

There are characteristic changes in breathing patterns which you may have experienced or are familiar with:

•       Waking up breathless in the night (paroxysmal nocturnal dyspnoea or PND) which is caused by the respiratory system becoming depressed or flattened)

•     Breathlessness when lying flat (orthopnoea) which means that a person is better able to breathe propped up in bed or sitting in a chair. This is often a presentation of advanced heart failure.

•       Breathing is more difficult and laboured when trying to lie on one side of the body (trepopnea) this can be a symptom of chronic heart failure

•       Breathlessness which is experienced when bending down to tie shoelaces or put on shoes (bendopnoea)

•       A type of breathing pattern called Cheyne-Stokes respiration, (sometimes called periodic respiration) can be experienced as cycles of breathing, which become increasingly deeper, followed by periods where respiration becomes gradually shallower. There may then be a period of apnoea, where breathing briefly ceases, before the cycle begins again. This type of breathing can occur either whilst awake or asleep, but is more common whilst sleeping.

•       Sleep apnoea is a respiratory condition where a person’s breathing is affected during sleep, causing periods of paused (stopped) breathing. See our factsheet on this, here.

Why do these breathing patterns occur?

As with most symptoms experienced by people with heart failure, these are a result of the heart becoming less efficient at pumping blood around the body over time. In particular, as the heart muscles weaken or stiffen they become less able to keep up with the supply of blood coming into and leaving the heart. This has an impact upon the lungs too, causing fluid accumulation (called oedema). Breathing difficulties  follow because fluid overloaded lungs can’t rid blood of carbon dioxide and exchange it for oxygen effectively. Additionally, pulmonary hypertension (raised blood pressure in the blood vessels that supply your lungs) can damage the right side of your heart which also contributes to breathlessness. 

Coping with Breathlessness

Certain types of breathing techniques might help you to manage breathlessness when it occurs:

•             Tummy Breathing. This is easier to do when lying down, maybe with a pillow under the head. Get into a comfortable position, uncross your legs and let your shoulders, then whole body relax. Rest one hand on the chest, the other on your tummy. Close your eyes to help you relax and focus on your breathing. Slowly breathe in through your nose. If you are relaxed, the air will reach low in your lungs. Feel your tummy move out against your hand.  Breathe out through your mouth and your tummy falls. Repeat this, imagining tension leaving you as you let the air out. Be aware of the hand on your tummy rising and falling; the hand on your chest should hardly move at all. Gradually try to breathe more slowly.

•             Paced Breathing. This is a helpful technique when you are moving around, walking or climbing stairs. You pace your steps to your breathing. Count to yourself as you walk or move; breathe in for one step and then take either one or two steps as you breathe out. Try different combinations to see which is most comfortable for you.

•             Pursed Lip Breathing. This can be useful to help control your breathing. Relax your neck and shoulders. Breathe in slowly through your nose to a count of 1-2. Now purse your lips as if about to blow out a candle, and exhale slowly through pursed lips to a count of 1-2-3-4.

Be aware of which activities or actions make you most breathless and plan accordingly. You may find it helpful to prioritise things you most enjoy or that most need doing. Pace yourself, adopt the most comfortable positions and take breaks.

Helpful suggestions to manage breathlessness

Try to avoid bending down since this can often cause you to experience breathlessness. Make a point of sitting and raising your leg to put on shoes and socks, sit down to wash, or prepare food. Equally, raising your arms will put a greater strain on your heart and will quickly cause breathlessness; you may need to ask for help.

There are things you can do around the house to help you cope with the impact of breathlessness, such as putting a chair in a hallway so you can rest when walking between rooms.

When bathing, don’t use very hot water as it may make you breathless. Try to use lukewarm water and open a door or window to stop the room getting hot and steamy.

Sitting up rather than lying down to rest is likely to reduce breathlessness as you are using gravity to assist in lung expansion and reducing pressure from the abdomen onto the diaphragm. Similarly, sitting forward and resting your arms on a table or secure surface with your wrists relaxed helps the chest muscles to relax which allows more air into the lungs.

Using additional pillows in bed and to keep your head raised will help at night. If you are travelling or staying away from home, remember to request additional pillows in advance.

Breathlessness can affect you when eating. Eating more often, but using a smaller plate rather than a dinner plate helps you achieve a balanced but smaller meal which may reduce breathlessness.

Creating a draft of air reduces the sensation of breathlessness. Facing towards a fan, or using a hand-held fan creates air moving over your face. Opening a bedroom window, especially at night, can achieve a similar effect.

Having someone massage your back during an episode of breathlessness can encourage muscular relaxation and may be comforting.

Emotional impact of breathlessness

Experiencing breathlessness can often cause a person to feel anxious and frightened; they may be preoccupied by episodes of breathlessness returning and this may cause the person to panic. When we panic or become anxious this can cause our breathing to become more rapid, making the breathlessness worse.

It is really important that you are able to recognise the onset of breathlessness and that you can manage its impact upon you emotionally as well as physically. Try some of the breathing techniques mentioned and acknowledge why this is happening. Having someone who you trust to share your concerns about breathlessness with and how it makes you feel, can be helpful.

We are here for you

At Cardiomyopathy UK we offer help and support for you and your family. You can call our helpline to talk to our support nurses on 0800 018 1024. We can put you in contact with other people through our support groups, support volunteers and social media. Contact us for more about our services.