Fluid build-up - oedema and lymphoedema

Oedema is swelling caused by a build-up of fluid. It's sometimes spelled edema. There are different types of oedema.

On this page, we have information for people living with a terminal illness about the causes, symptoms and treatment of oedema. And we talk more about a specific type of oedema called lymphoedema.

On this page:

What is oedema?

Oedema (pronounced 'uh-dee-ma') is swelling that develops because of a build-up of fluid.

If you're living with a terminal illness, the types of oedema you may develop include:

• peripheral oedema — swelling under your skin, often in the legs
• lymphoedema — swelling under your skin caused by problems in the lymphatic system
• ascites — fluid build-up in your abdomen (tummy).

Find information and support for ascites.

There are also other types of oedema that might need specialist treatment from your medical team. These include cerebral oedema (fluid in the brain) and pulmonary oedema (fluid in the lungs).

Causes of oedema

Oedema can be caused by different things, including:

• illnesses like cancer, heart failure or kidney failure
• the side effect of medications
• not moving for long periods of time
• a very low level of protein in your blood (hypoalbuminemia).

Symptoms of oedema

As well as swelling under the skin, symptoms of oedema can include:

• stretched, shiny or discoloured skin
• pain and discomfort
• stiff joints
• leaking of fluid from the skin
• a feeling of tightness or heaviness.

Treatments for oedema

Tell your nurse or doctor if you think you have oedema. They will look to see if there's a specific cause and suggest ways to help. They may also refer you to a specialist physiotherapist, occupational therapist or specialist nurse.

If they find a specific cause for your oedema, they may be able to treat it directly. If they cannot find a specific cause − or cannot treat the cause − they can support you with ways to get relief from the symptoms.

Things that can help with managing the symptoms of oedema include:

• using compression stockings, socks or tights
• putting your feet up when sitting, or raising your legs with pillows when you're in bed
• keeping active − even gentle exercise can help
• medication.

These things can help manage the symptoms of oedema by encouraging the fluid to drain away. This helps to reduce the swelling.

What is lymphoedema?

Lymphoedema is a type of oedema. It's caused by a blockage or failure of the lymphatic (pronounced 'lim-fa-tick') system.

The lymphatic system is made of lymph nodes (glands) and tiny tubes (lymph vessels). The fluid in your body drains into lymph vessels so it can be carried back to your heart and into your blood.

If you have a problem with your lymphatic system, the fluid does not drain away properly and builds up under your skin.

Lymphoedema may affect your arms or legs but can also affect other areas of your body.

Causes of lymphoedema

There are many different reasons why someone might develop lymphoedema. It can be caused by cancer and treatments for cancer, including radiotherapy and surgery.

Symptoms of lymphoedema

When lymphatic fluid builds up in the body, it can cause problems including:

• swelling
• pain or discomfort
• a feeling of tightness or heaviness
• difficulty moving
• leaking of fluid from the skin
• thickening of the skin
• skin infection – if you have lymphoedema you have a higher risk of infection if you have a cut or scratch in your skin.

Some people find lymphoedema distressing. It can change the way you think about your body. And it may make you feel low in mood or anxious.

Read about feelings of depression and anxiety if you're living with a terminal illness − and how you can find support.

Visit The Lymphoedema Support Network for more information and to hear how other people manage with lymphoedema.  

Treatments for lymphoedema

You should speak to your doctor or nurse if you think you have lymphoedema. They can do some tests to find out if it is lymphoedema and what's causing it.

If possible, they should try to avoid doing tests like blood tests or injections in the arm or leg that's affected. It may not always be possible (if you have signs of lymphoedema in more than one place, for example).

The doctor or nurse can also refer you to a specialist team for assessment if there is one in your area.

You can also contact The Lymphoedema Support Network   to find out about your local lymphoedema service.

While lymphoedema cannot be cured, there are things that can help to manage it.

There are four main ways of treating lymphoedema, which we explain below.

There are also specialist treatments that may be available in your area. Your doctor, nurse, or lymphoedema specialist will help you find the techniques that work best for you.

Compression for lymphoedema

This involves using special clothing or bandages that gently squeeze the part of your body affected by lymphoedema. This encourages the fluid to drain away.

Massage for lymphoedema

Manual lymphatic drainage (MLD) is a special type of light massage. It needs to be done by a trained healthcare professional.

Simple lymphatic drainage (SLD) is based on MLD but you can be taught how to do it to yourself. If someone is helping to care for you, they could also be taught how to do this special type of massage.

Lymphoedema Support Network has some helpful videos about massage techniques. Watch Lymphoedema Support Network's videos.  

Skin care for lymphoedema

If you think you have signs of an infection, then it's important to seek medical attention as soon as possible.

Keep your skin clean and moisturised. Clean any cuts or scratches with an antiseptic. You can cover them with a plaster to help reduce the risk of infection. But be careful about using a plaster if the skin around the cut or scratch is very thin. It may damage the skin more.

See your doctor or nurse if you're worried about how to care for any cuts, scratches or broken skin.

Moisturise your skin with a bland cream at least once a day. Ask your nurse, doctor or lymphoedema specialist about the best cream for you.

Exercise for lymphoedema

Moving your body, even a little bit, can help the lymphatic fluid to drain away. It can help control swelling and may help to keep you more mobile.

The type of exercise or movement that you can do will depend on your condition and how well you are. Ask your doctor or nurse about what would be safe for you. They may refer you to a specialist physiotherapist, occupational therapist or a specialist nurse who can support you with exercises. You can also contact the LSN to find out about a lymphoedema clinic in your area.

Read more information about being active when you're living with a terminal illness.

Getting support

You may be finding it hard to manage with symptoms like oedema or lymphoedema.

If you would like to speak to someone, you can call our Marie Curie Support Line for free on 0800 090 2309* or email support@mariecurie.org.uk. You can also call them if you're caring for someone with oedema or lymphoedema. Our Support Line can provide emotional support, or they can arrange for you to speak to an Information and Support Nurse if you'd like practical information.

You can also contact the Lymphoedema Support Network.   They have lots of information to support people living with lymphoedema including fact sheets and videos. You can call them on 020 7351 4480 to find out about the nearest clinic in your area.

Marie Curie's Online Community may also be a place to connect with others who are living with oedema or caring for someone with oedema. Visit Marie Curie's Online Community.

Useful websites

NHS   – swollen ankles, feet and legs (oedema) 
The Lymphoedema Support Network  
The British Lymphology Society  

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