Infection and lymphoedema

Getting an infection

An infection can make the swelling (lymphoedema) worse.

Treating an infection early can stop it becoming a more serious problem. Tell your healthcare team immediately about any symptoms. Even if it turns out that you don’t have an infection it’s better to find out as soon as possible.

Symptoms of infection

There are several symptoms you might have when you have an infection. Symptoms can also depend on where the infection is. A temperature (fever) may be the first or only sign of an infection. But with some infections, you may have other symptoms without a fever.

Call your 24 hour advice line straight away if you have any of these:

• a change in your temperature – 37.5°C or higher or below 36°C

• flu-like symptoms – symptoms can include feeling cold and shivery, headaches, runny or blocked nose and aching muscles

• generally feeling unwell

• reddening of the skin – this might start in one area and get larger, include the whole limb or cause red lines

• swelling to an area of the body

• warmth or heat around the affected area

• pain

• being sick (vomiting)

• feeling dizzy or faint

• a fast heartbeat

• skin colour changes

On white skin the area might look red. On black or brown skin this may look yellow or purple, or it may appear darker than usual. An infection might start in one area and get larger. It might include the whole arm or leg (limb).

An infection of the lymphatic vessels is also known as lymphangitis. This is inflammation and infection causing lines or tracks to appear on the skin. Depending on your skin tone they may appear red or darker than your skin.

Cellulitis

People with lymphoedema are at risk of developing an infection called cellulitis. Or an acute inflammatory episode (AIE).

Cellulitis is an infection of the deep layers of the skin. This type of infection can cause damage to the lymphatic vessels. You can become very unwell with cellulitis and will need antibiotic treatment.

Remember early treatment helps to stop an infection becoming more serious and can stop your lymphoedema from getting worse. So the most important thing you can do is contact your 24 hour advice line straight away.

Having cellulitis and an infection doesn’t necessarily mean you don’t have to wear your compression garments or bandaging. You would usually only remove them if you have pain. They should be put back on as soon as possible. This means as soon as the area is comfortable and you can cope with the garment or bandaging again. Your lymphoedema specialist will advise you about this.

Tips to help lower your risk of infection and injury

• Protect your hands from cuts and scratches when you’re doing household jobs such as gardening or home improvements.

• With arm lymphoedema, wear oven gloves and long sleeves to avoid burns when getting things in and out of the oven.

• Wash and dry your feet thoroughly, including between your toes – this is to try preventing a fungal infection from developing.

• Be careful to avoid scratches when handling pets - clean the area straight away if they scratch you.

• Wear insect repellent to avoid bites and stings.

• When going out in the sun, wear sunscreen with at least SPF 30 and 4 or 5 stars. Use it generously, reapply regularly and use together with shade and clothing.

• Be careful when removing body hair. Using an electric razor or hair removal cream can be better than shaving, waxing and plucking. Test any creams first on another part of your body. Before using any hair removal products ask your lymphoedema specialist for advice.

• Wear well fitting shoes and avoid going barefoot if you have lymphoedema of the leg - this lowers your risk of blisters or injuring your feet.

• Be careful when cutting your nails to avoid cutting your skin. Use nail clippers - if it’s difficult to cut your toenails see a chiropodist or podiatrist regularly. Keeping your nails short helps prevent scratching other areas of your skin.

• Check your skin daily for any changes. Look out for any thickening of the skin, changes in colour, and any blisters or spots - contact your lymphoedema specialist if you have these.

• Be careful if you use hot tubs, steam rooms or saunas and use them for a short amount of time. There is some evidence the heat might affect the swelling. But more research is needed. Always check the swollen area for any changes while you use a hot tub, sauna, or steam room. To reduce the risk of infection avoid these if you have any open wounds or cuts to your skin.

Treating an infection

Your doctor will prescribe antibiotics if you have an infection. You might need to have them into your bloodstream (intravenously) at first. Or you might take them by mouth, as tablets or capsules. It is important that you take the full course of your antibiotics.

You are usually on antibiotics for 14 days (2 weeks).

You might need to take a low dose of antibiotics every day if you have several infections within a short time. This is to try and prevent further infections. It is not possible to always prevent infection. But it may mean they happen less often, and if you do get an infection, it may be less severe. You may need to take antibiotics for up to 2 years. In some cases, people may need lifelong antibiotics.

If you have had cellulitis in an area of lymphoedema then your risk of developing it again is high. Your doctor may give you a course of antibiotics to carry with you in case you need them. This might be helpful if you are going away on holiday for example. They usually tell you to take them immediately if you have symptoms of cellulitis. You should then contact a doctor to be seen as soon as possible

The British Lymphology Society (BLS) and the Lymphoedema Support Network have guidelines on the management of cellulitis that gives advice to doctors. It guides them on the use of antibiotics for people with lymphoedema. You can take this with you to the doctor.

Go to the British Lymphology Society website to download these guidelines

Leaking fluid from your skin

Sometimes lymph fluid can leak from the surface of your skin. This is called lymphorrhoea. You pronounce it as lim-for-ree-uh. The fluid is clear or straw coloured. It can happen in any area of the body, but it most commonly happens in the legs. Some people also call this ‘wet legs’.

Causes of lymphorrhoea include:

• a scratch to the skin when it is swollen

• hurting the area when the skin has become scaly

• the area becoming swollen quickly

• low levels of a protein called albumin in the blood

• not moving or being unable to move (immobile)

• advanced cancer

• changes to your general medical health such as cellulitis

• not wearing your compression garments or bandages if they have been recommended

It’s important to have treatment for lymphorrhoea to help prevent long term tissue damage. They can treat it with dressings, skin care, bandaging, physical activity or compression wraps.

Coping with lymphoedema

Most people have a mix of feelings when they find they have lymphoedema. After treatment, people are often glad that they have got through it. But it can also feel very unfair to have to cope with a treatment side effect. You might have a range of feelings including fear, sadness, anxiety and depression. Talking to your lymphoedema specialist about how you are feeling can help.

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