Managing and treating lymphoedema

Management of lymphoedema aims to:

• reduce and control swelling
• help with discomfort
• stop fluid build-up.

It should make the affected area less swollen, easier to move and feel more comfortable. Sometimes, it may take several weeks or months before you notice much improvement.

Your lymphoedema specialist will talk to you about the best way to manage your situation. You will usually have a combination of treatments, as they work better when used together.

The main ways to manage lymphoedema are:

• skin care
• exercises and keeping active
• positioning of the limb or area
• compression
• a type of massage called lymphatic drainage.

You may have other treatments, including taping and surgery. But these are less common.

These treatments usually help reduce lymphoedema, wherever it is in the body. Your lymphoedema specialist will explain the best way of managing lymphoedema in areas of the body that are more difficult to treat. This includes the breast or chest, head and neck area, and the genitals.

To start with, you may have regular treatment from your lymphoedema specialist. After this, the specialist will talk to you about how you can manage the lymphoedema yourself.

Learning how to manage lymphoedema yourself is the main part of treatment. This means you have fewer hospital appointments. It also gives you more control over when to do your lymphoedema treatment, so you can fit it into daily life.

After your lymphoedema specialist has assessed you, they will discuss the best way to manage the lymphoedema. You will usually have a combination of treatments.

You need to do the treatments regularly to get the best results. Your specialist will tell you how often to do them. You can slowly add your lymphoedema care into your daily routine.

Family or friends often want to help, and there may be practical things they can do. They may be able to help with tasks you find difficult because of the swelling. They could also help you with your compression garment or give you a simple lymphatic drainage massage.

Clothes that are too tight can stop lymph fluid draining. These can include bras, vests, or anything with a tight waistband.

You should make sure your bra is not too tight around the chest. The straps should not dig into your shoulders or under the arm. Try wearing a bra that has wide and flexible shoulder straps and bands around the chest. It is also important to make sure you have the right cup size. Your lymphoedema specialist can advise you on getting measured correctly.

Some breast prostheses are very heavy. This can cause pressure to the chest area, making the shoulder straps on a bra dig in. If you need to wear a prosthesis, try to get a lightweight one. Your lymphoedema specialist or breast care nurse can advise you about bras and breast prostheses.

If you have breast or chest lymphoedema, your specialist can give you compression bras and specialist vests. You often need to have these made specially for you, so that they fit properly. It can also be helpful to wear a sports bra.

You may need to wear a compression sleeve. This is to stop fluid moving from one area to another. It can also help improve drainage. You do not often have compression bandaging to treat lymphoedema in the breast or chest area.

You may have manual lymphatic drainage (MLD) and simple lymphatic drainage (SLD) to treat breast and chest lymphoedema.

Your lymphatic drainage therapist can give you more information about this.

You can usually manage lymphoedema of the face, neck or head with MLD and SLD. Sometimes, you can have Kinesio^® taping (see below). You may have special low-pressure compression garments to use in this area of the body. But you should never have compression to the neck area. You sometimes have surgery to treat lymphoedema of the eyelids.

It is important to know the signs of an infection. An infection in the skin is called cellulitis. Getting treatment for an infection as soon as possible puts less stress on the lymphatic system. This can stop lymphoedema getting worse.

If you get cellulitis, the area may become:

• red and hot
• painful
• more swollen.

You may also:

• have red streaks going up or down from the infected area
• have a high temperature (fever)
• feel generally unwell, like you are getting the flu.

If you have any of these signs, contact your GP straight away. They will usually prescribe a course of antibiotics, which you should start straight away. If it happens in the evening or over the weekend, do not wait to see your GP and call the NHS urgent advice number on 111.

You should also contact your lymphoedema specialist. They will usually tell you to stop all lymphoedema treatment until the infection is treated.

Some people with lymphoedema get fungal infections in areas where there are skin folds. For example, your groin, in between the toes, underneath the breasts or any area where you sweat a lot. If you think you have a fungal infection, contact your GP.

Do not wear any compression garments if you have a skin infection and it is painful. Contact your lymphoedema specialist for advice. Rest the swollen area in a comfortable position. For example, you could support the whole limb with a pillow. You should not exercise until the infection has gone.

You should wear your compression garment again as soon as you start feeling better and it is comfortable. You should wear it even if you are taking antibiotics.

In the UK, there is guidance for healthcare professionals on using antibiotics to treat cellulitis when you have lymphoedema. The guidance is written by a group of lymphoedema specialists. It is important your GP follows this guidance when prescribing antibiotics for lymphoedema.

The guidance is available from the British Lymphology Society.

It is also important to rest, and keep the affected area raised. You should remove compression garments if they are painful. You should not wear them until it is comfortable again. You may need pain relief from your doctor.

Some people with cellulitis need to go to hospital to have antibiotics as a drip (infusion) into a vein. This is called intravenous treatment. This normally happens when cellulitis is more severe, or becomes worse after taking antibiotics at home.

Lymphorroea is when lymph fluid leaks from the skin in the affected area. It is not common, but can happen when:

• an area is very swollen
• the skin is very dry
• the area of swelling is difficult to treat, for example the genital area
• there is a break in the skin
• a blister filled with lymph fluid appears on the surface of the skin and breaks.

It is important to take good care of your skin. If you have lymphorroea, keep the area clean. The broken skin can easily cause an infection, such as cellulitis.

You should see a lymphoedema specialist as soon as possible if you have lymphorroea. They will try to stop the skin from leaking. If you cannot get hold of your lymphoedema specialist, contact your GP or district nurse.

The specialist can show you ways of managing lymphorroea at home. It may also help you to have some light bandaging. This can reduce swelling in an area that is difficult to manage with a compression garment.

Here are some things you can do while waiting to see a specialist:

• Keep the skin clean and look for signs of infection.
• Apply moisturiser around the area that is leaking.
• Lift your limb when you can – for example, raise an arm to the level of the shoulder or a leg to the level of the hip.
• Regularly apply a clean, dry dressing to the area. But do not tape it to the skin. Gently hold it in place with a soft bandage. Only put on a lymphoedema bandage if your lymphoedema specialist has shown you how to do it.

Having lymphorroea can be upsetting. You may find it difficult to manage. But specialist support can help you. If lymphorrhoea is affecting how you feel about your body, we have more information about body image that may help.