Lymphoedema

What is lymphoedema?

Lymphoedema is a chronic condition caused by failure in the lymphatic system, meaning that lymph cannot drain properly from a part of the body. There are many reasons why this might happen, from tick bites to post-operative side effects, however the end result is a build-up of fluid in the tissues causing chronic swelling, often with thickened skin and other skin changes. Lymphoedema is most common in the arm or leg but it can appear in other parts of the body as well, such as the head and neck and genitalia.

What is the lymphatic system and why is it important?

The lymphatic system acts as the drainage route for the body’s cells, carrying away excess fluid, waste materials, immune cells and proteins from the tissues. The fluid that leaves the cells and enters the lymphatic system is called lymph. The system is made up of a network of lymph vessels and glands (which are also called lymph nodes). The lymph glands clean up the lymph before it re-enters the bloodstream by sieving out, trapping and destroying foreign materials. They hold immune cells (lymphocytes) which will attack any bacteria or infection present in the lymph.

How does lymphoedema affect people?

Initially the swelling may be mild, and vary throughout the day. In some people, lymphoedema becomes more of a problem and without treatment it may become more severe. Other symptoms in an affected body part can include an aching, heavy feeling, difficulty with movement, repeated skin infections (cellulitis), the skin becoming hard and tight, folds developing in the skin, wart-like growths developing on the skin and a leakage of fluid through the skin.

What can be done to reduce the symptoms of lymphoedema?

There is no cure for lymphoedema, but with the correct advice and management, it can be well controlled.  Management techniques minimise fluid build-up and stimulate the flow of fluid through the lymphatic system. These include wearing compression garments, taking good care of your skin, moving and exercising regularly, having a healthy lifestyle, and using specialised massage techniques.

What can I do to manage my lymphoedema?

You can take an active role by following these lymphoedema self-management tips.

Skin care

• Wash your skin every day with a neutral soap or water-based cream, dry gently then apply an unperfumed moisturiser to keep your skin healthy and supple. This can be awkward or difficult if the swelling becomes pronounced, however it is important to keep the area in-between any folds and undercuts in your skin (especially around the toes) very clean to avoid any bacterial growth.
• Protect your skin from damage that may lead to more swelling, for example use insect repellent to avoid insect bites; wear gloves when gardening; protect from sunburn with a high sun factor protection cream.
• Use antiseptic cream or spray on any breaks in your skin on the swollen areas.
• If your leg is affected, avoid walking barefoot and take good care of your nails. Treat any fungal infections (athlete’s foot) and use cream/powder to prevent it returning.
• Since lymph is an excellent breeding ground for bacteria, it is very important that if you feel you have picked up an infection because you are finding it difficult to move the affected limb or the area is tender, immediately contact your doctor or NHS 24.  This is usually cured with a course of antibiotics. 

Movement and exercise

• If your leg is affected, wear good fitting, comfortable shoes that help you walk as normally as possible. Avoid standing or sitting for long periods.
• Try to move the affected limbs as much as possible, rotate your ankle or flex and move your arm or leg when you have to be in a fixed position for a long period, such as on a long car or plane journey. 
• If your arm is affected, keep moving your arm as normally as possible, but avoid repetitive movements and gradually build up the strength in your arm.
• Wear compression garments during the day and while exercising; take them back for more advice if they do not fit. You may be reluctant to wear compression garments because of the way they look; however there are many different styles available in various colours and patterns so they could be an expression of your individualism.
• Massaging techniques can also be effective in moving the lymph toward lymph nodes and areas that can process it, reducing the amount that is retained. 

Coping with lymphoedema

Living with a chronic (long-term) condition that affects your appearance, such as lymphoedema, can cause a great deal of distress and lead to periods of depression. If you have been feeling particularly down for the last few months, are putting off doing essential daily actions and you no longer take pleasure in the things you usually enjoy, you may be depressed. If this is the case, talk to your GP or members of your lymphoedema treatment team, because there are effective treatments for depression.

Lymphoedema Support Group

Talking to other people who also have lymphoedema can be reassuring and decrease feelings of isolation, stress and anxiety. Maggie's Highlands hosts the online Lymphoedema Support Group on the second Monday of each month.

More useful links

• The Lymphoedema Support Network (LSN) - a registered charity and the UK's national patient support organisation for those living with or affected by lymphoedema.
• Legs Matter! - the Legs Matter coalition is working together to increase awareness, understanding and action on lower leg and foot conditions among the public and healthcare professionals.
• Macmillan Cancer Support - lymphoedema can develop months or even years after cancer treatment. If you're living with lymphoedema we have information and support for you.