Living with Lymphoedema

This leaflet explains what lymphoedema is and what you can do yourself to manage the condition. Your lymphoedema nurse will explain the treatments fully to you.

If you would like additional information about Lymphoedema, and what the treatment involves, please speak to one of the lymphoedema nurses. They will be more than happy to help.

What is lymphoedema?

Lymphoedema is a long-term (chronic) condition that causes swelling in the body’s tissues. It can affect any part of the body, but mainly develops in the arms or legs. Not all lymphoedema is associated with having cancer.

The lymphatic system is a network of small vessels and glands situated throughout the body. The main functions of the lymphatic system are helping to fight infection and draining excess fluid from the tissues.

There are two main types of lymphoedema:

• Primary Lymphoedema. This is caused by faulty genes that affect the development of the lymphatic system. It can develop at any age, but usually starts during infancy, adolescence or early adulthood.
• Secondary Lymphoedema. This is caused by damage to the lymphatic system or problems with the movement and drainage of fluid in the lymphatic system. It can be the result of a cancer treatment, an infection, injury, inflammation of the limb or a lack of limb movement and obesity.

It is important that lymphoedema is identified and treated as soon as possible. If it is not treated, it can get worse.

Symptoms of lymphoedema

The main symptom of lymphoedema is swelling in all or part of the limb or another part of your body. It can be difficult to fit into some clothes/shoes, and jewellery/watches can feel tight.

Initially the swelling may come and go. It may get worse during the day, or after some activities, and go down overnight. Without treatment it will usually become more severe and persistent.

Other symptoms in an affected body part can include:

• an aching, heavy feeling
• difficulty with movement
• repeated skin infections
• hard, tight skin
• folds developing in the skin
• wart-like growths developing on the skin
• fluid leaking through the skin.

Treatment for lymphoedema

Although Lymphoedema cannot be cured, there are effective things which you can do to help yourself. If you want to reduce the swelling you will need to undertake a combination of the following:

Skin care
The part of your body affected by lymphoedema is more vulnerable to infection due to the build-up of fluid within the tissues and because the lymphatic system is not working as effectively in that area.

Any cuts in your skin can allow bacteria to enter your body and may quickly develop into an infection.

Skin infections can also damage your lymphatic system and cause lymphoedema to develop.

You can reduce your chances of developing skin infections by taking meticulous care of your skin:

• wash and dry your limbs daily, taking particular care between the fingers and toes to prevent fungal infections
• moisturise the limb every night to keep the skin supple and prevent dryness and cracks
• protect the limb from injury when working in the garden and kitchen. Wear rubber or gardening gloves on your hands (if arm is affected by swelling) and always wear something on your feet (if legs are affected by swelling)
• treat all cuts and scratches immediately to avoid infection by cleaning well and applying antiseptic cream
• avoid sunburn by using a high factor sun cream
• use a depilatory cream (patch test first) or an electric shaver for removing unwanted hair. Avoid razors or waxing.

Exercise and movement
Regular exercise and movement will help you to control your swelling. Using your muscles helps to pump fluid out of the limb. It is important to do lots of gentle exercise; keeping the swollen limb still or over exerting may increase the swelling. If you are overweight, this will contribute to your swelling, so it would be helpful to lose weight.

Your lymphoedema nurse will discuss a movement and exercise plan with you. This may include specific limb exercises as well as gentle exercises to move your whole body, including walking, swimming and cycling.

Simple lymphatic drainage (self-massage)
Simple lymphatic drainage is used to stimulate the drainage of lymph fluid from the swollen area into working lymph nodes where it can be drained. Your Lymphoedema nurse may teach you this technique.

Videos are available from the Lymphoedema Support Network website: https://www.lymphoedema.org/information/self-management-videos/ Select the area of the body on the link.

Compression garments
You may be fitted into a compression garment at your appointment. This limits the accumulation of fluid in your limb(s) and helps the pumping action of the muscles. The combination of exercise and compression encourages the fluid to move out of the affected limb.

You will be taught how and when to apply and remove your compression garment and given advice on their care.

Additional advice

• for those with arm lymphoedema, avoid lifting heavy shopping
• there is no strong evidence that having injections, blood tests, or blood pressure taken on the affected limb will cause lymphoedema, but current recommendations are that the unaffected arm should be used where possible
• for those with leg lymphoedema, sit with your legs up at hip height whenever you are sat down and not walking around
• use your limb normally. You are more likely to increase your risk by protecting the limb and not using it enough. Don’t overuse it though, to the point it aches and feels heavy
• avoid wearing tight clothing around the armpit or groin of the affected limb.

Cellulitis

If you notice any of the following changes, please contact your GP immediately as you may have developed cellulitis which will require antibiotic treatment:

• sudden increase in swelling
• heaviness
• flushing or hot, red skin
• skin rashes
• flu-like symptoms, ie a high temperature or chills.

Travel advice

When travelling abroad, take a first aid kit containing the following items to help prevent further complications:

• Antiseptic
• Insect repellent (which contains at least 50% DEET – the most common active ingredient in insect repellents)
• High factor sun cream
• If you are travelling to a country where easy access to medical care may be difficult, OR if you had an episode of cellulitis before, ask your GP for a ‘just in case’ course of Flucoxacillin (Doxycycline if allergic to Penicillin).

Contact numbers

We hope that you have found this information useful. If you have any questions or are worried about anything, please speak to the following Dorset County Hospital staff:

Lymphoedema nurses: 01305 255370

Useful websites

The Lymphoedema Support Network
020 7351 4480
www.lymphoedema.org/lsn

British Lymphology Society
01452 790178
www.lymphoedema.org/bls

About this leaflet

Authors: Emma Diaz, Dawn Johnston and Lucy Harris, Lymphoedema Nurses
Written: April 2020
Updated and approved: October 2025
Review date: October 2028
Edition: v2

If you have feedback regarding the accuracy of the information contained in this leaflet, or if you would like a list of references used to develop this leaflet, please email patientinformation.leaflets@dchft.nhs.uk