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Lymphoedema


Expert reviewers, Henriette du Toit, Therapy Manager and Lymphoedema Therapist and Karly Armour, Occupational Therapist and Lymphoedema Therapist
Next review due May 2024

Lymphoedema (pronounced lim-fo-dee-mah) is the build-up of a fluid called lymph in a part of your body, causing it to swell up. It happens when something goes wrong with your lymphatic system. It usually affects your arms or legs. But it can happen in other parts of your body too.

An image showing the lymphatic system

What is lymphoedema?

Lymphoedema happens when something goes wrong with your lymphatic system. Your lymphatic system includes a network of tubes draining fluid (lymph) from all the tissues around your body. The lymph passes through nodes (or glands), which filter it and remove waste and harmful cells. Your lymphatic system helps to maintain the right fluid balance in your body. It also supports your immune system by fighting infection.

When there’s a fault in your lymphatic system, the lymph can’t drain away properly. This causes a build-up of lymph, which then collects in your tissues and causes swelling. It also increases your risk of skin infections if you damage your skin.

Causes of lymphoedema

There are two main types of lymphoedema: primary and secondary.

Primary lymphoedema is rare and results from problems with how your lymphatic system develops. You can be born with primary lymphoedema but it can also develop later in life. It may be something that runs in your family but in most cases, your lymphatic vessels just haven’t developed properly for some reason.

Secondary lymphoedema is much more common. It’s caused by damage to your lymphatic system. There are a number of things that can cause secondary lymphoedema. These include:

  • cancer treatment – including (a) surgery to remove lymph nodes (often for breast cancer) and (b) radiotherapy, which damages lymph nodes
  • cancer – where enlarged lymph nodes or a tumour blocks the flow of lymph
  • infections such as cellulitis of the leg, which may damage your lymph vessels
  • long-term skin inflammation such as rosacea and psoriasis, which can damage lymph vessels
  • an injury to your armpit or groin which damages the lymphatic system
  • being very overweight (obese) – this can cause lymphoedema or make it worse
  • reduced mobility – lack of movement will stop lymph from moving around your body
  • problems with veins such as varicose veins, which results in your lymphatic system becoming overloaded

Symptoms of lymphoedema

Early lymphoedema

One of the first symptoms you may notice is swelling in part of your body. This is most common in an arm, leg, hand or foot or in your genital area. There may be only a slight swelling at first, and it may be more noticeable towards the end of the day or in hot weather. You may become aware of jewellery, clothes or shoes starting to feel tighter before you notice any swelling. Your arm or leg may feel heavy or weak too.

Always seek help as soon as you notice these symptoms. It’s possible to treat the swelling with simple measures at this stage, so it’s best to start treatment as soon as possible. See your GP or, if you’re under the care of a cancer team, your cancer doctor or nurse. They should refer you to a lymphoedema specialist.

Advanced lymphoedema

If you don’t get treatment, the swelling may become worse and more constant (it doesn’t go away overnight). The swollen area may turn very hard and solid, and the skin over the affected area can thicken and become rough.

Sometimes, in very advanced or severe lymphoedema, your skin may start to break down and leak fluid. Contact your doctor straight away if this happens.

If you have lymphoedema, you’re more likely to develop a skin infection called cellulitis. Cellulitis requires quick medical attention – you’ll often need treatment with antibiotics. For more information, see our section: Living with lymphoedema.

Diagnosing lymphoedema

It’s important that lymphoedema is diagnosed properly so that you can get the right type of treatment.

Your GP will usually be able to tell if you have lymphoedema based on your symptoms, the appearance of the affected area and your medical history. They should refer you to a lymphoedema specialist (often a nurse or physiotherapist), to confirm your diagnosis and manage your treatment.

Measuring volume

Your doctor or lymphoedema specialist will examine the affected area to check the swelling and any changes to your skin. They may measure around the affected area using a tape measure. If your arm or leg is affected, they may compare it to the unaffected side. They’ll also be able to compare measurements over time or after treatment.

There are other methods your doctor or specialist may use to measure the size of the swelling. These include:

  • perometry, which uses an infra-red light
  • bioimpedance spectroscopy, which uses an electrical current to measure water content in affected tissues

Other scans and tests

Your doctor or health professional may sometimes arrange for other scans and tests to investigate and confirm the diagnosis. These include the following.

  • A lymphoscintogram (pronounced lim-fo-sin-toe-gram). This involves having an injection of a radioactive marker, which can then be tracked on scans. The scan will show if there are any areas where lymph isn’t flowing properly.
  • Ultrasound, MRI or CT scans. These are sometimes used to help support a diagnosis.
  • Genetic testing. Your doctor or specialist may recommend this if they think you may have primary lymphoedema.

Treatment for lymphoedema

Lymphoedema can’t be cured so treatment is aimed at managing the symptoms. This includes reducing swelling, stopping more fluid building up, looking after your skin and reducing any discomfort. You may have a combination of different treatments, usually in a specialist lymphoedema clinic.

There are four main elements to lymphoedema treatment:

  • skin care
  • massage
  • exercise and movement
  • compression

Skin care

Your lymphoedema therapist will teach you how to look after your skin and keep it in good condition, with regular bathing and moisturising. This is important to reduce your risk of damaging your skin and developing infections. For more information on skin care, see our section: Living with lymphoedema.

Specialised lymphatic massage techniques

Massage performed in the right way can help to move lymph away from swollen areas and around your body. When combined with compression, it may help to reduce swelling in mild-to-moderate lymphoedema. Your lymphoedema therapist can teach you how to do simple massage yourself or a relative or carer can do it for you. If you have severe lymphoedema, your therapist may carry out a specialised form of massage called manual lymphatic drainage.

Lymphoedema exercises

Exercise is a very important part of managing lymphoedema. Tensing and flexing your muscles as you move helps lymph to move around your body. Exercising will also help you to maintain a healthy weight, which is another important part of managing lymphoedema.

Your lymphoedema therapist can advise you on a programme of exercise and movements to help you.

Compression

Compression means wearing fitted, elastic compression garments or bandages to reduce swelling. A compression garment may be a sleeve, stocking, glove or something else depending on where the swelling is.

You’ll usually wear it all day and sometimes at night too. There are also adjustable wraps, which you may be able to use. Sometimes, your therapist may suggest using pneumatic compression. This provides compression by using a pump device to inflate a cuff around the affected area of your body.

If your lymphoedema is severe, your therapist may suggest using a system of bandages (multi-layer bandaging) to reduce your swelling. This is considered to be the most effective type of compression. Once the size and shape of the swelling has improved, you can be fitted with compression garments.

Complete decongestive therapy (CDT)

Complete decongestive therapy (CDT) is an intensive programme combining treatments, which you do on a daily basis. It’s generally considered to be the most effective way to treat moderate or severe lymphoedema. CDT is divided into two parts or phases:

  • an intensive or decongestive phase, generally lasting two to four weeks, aimed at reducing swelling
  • a maintenance or self-management phase, which lasts for months or years, where you care for yourself and maintain the improvements

Other treatments

Your clinic may offer certain other treatments too. These may include the following.

  • Kinesio taping to help with draining fluid and reducing swelling in lymphoedema. This is a technique commonly used for sports injuries.
  • Laser therapy, which uses a laser to target cells in your lymphatic system. This can help reduce swelling and improve lymph flow.
  • Deep oscillation therapy, which uses a device that applies vibrations to the affected tissues. This stimulates the flow of lymph.

Not all of these treatments are widely available, so they may not be offered at your clinic.

Surgery

Occasionally, your doctor or therapist may suggest surgery to help manage your symptoms in the long term. Surgery may help drainage of lymph or reduce the volume of tissue or fat in the affected area. Liposuction is one technique that can be used for this. In most cases, surgery doesn’t stop you needing compression garments to stop swelling coming back.

Living with lymphoedema

Whether you’re at risk of lymphoedema or already have a confirmed diagnosis, there are steps you can take to look after yourself. This might prevent you developing lymphoedema or stop it from getting any worse.

Keep in contact with your medical team

Attend check-ups with your doctor or therapist as advised. Between check-ups, you should let them know about any changes in parts of your body that are affected or at risk. This could be increased swelling or changes in the skin or sensation in the part of the body that’s affected or at risk.

Keep to a healthy weight and exercise

Keeping your weight at a healthy level is really important for preventing or managing lymphoedema. A key part of doing this is keeping active and doing regular exercise. Exercise will help you to manage your symptoms, as well as keeping your weight under control. If you’re overweight, it’s a good idea to lose the excess weight because this can improve symptoms or reduce your risk of developing lymphoedema.

If you have questions about what diet or type of exercise would be best for you, speak with your doctor or lymphoedema specialist.

Know the signs of cellulitis

If you have lymphoedema or are at risk of developing it, you’re at greater risk of developing a skin infection called cellulitis. This is not the same as cellulite (harmless dimpled skin). Symptoms of cellulitis can include redness, a feeling of warmth and pain in the affected area, and a fever or flu-like symptoms. It’s important to watch out for early signs of cellulitis. Call 111 or contact your GP as soon as possible if you think you may have the infection.

Look after your skin

Keeping your skin clean and well moisturised and protecting it from damage will help to avoid infection. Here are some tips.

  • Wash your skin with warm water, carefully dry it (especially between fingers and toes) and moisturise every day. If you have lymphoedema, your therapist may recommend some moisturising creams.
  • Take care cutting your nails and don’t cut your cuticles. Consider having your nails cut professionally.
  • Wear insect repellent to avoid insect bites.
  • Wear gloves when gardening and doing housework or DIY.
  • Don’t walk around barefoot.
  • If you do get a cut or graze, clean and dry it well and apply antiseptic cream.
  • Wear sun protection so you don’t get sunburnt.

Other self-care measures

There are other steps that you can take to reduce your symptoms if you have lymphoedema.

  • Avoid putting pressure on the affected body part. For example, don’t wear jewellery or clothing that is too tight because this can block the flow of lymph.
  • Try not to sit or stand in one position for a long time – for example, on long journeys. Move around often and do some gentle stretches. If your legs are swollen, elevate them when sitting.
  • Avoid spending too long in extreme cold or heat – for example, in hot tubs or saunas or sitting close to a fire.
  • If one of your arms is affected, avoid having injections, blood tests or your blood pressure taken in that arm if possible. Always tell any health professional you’re seeing about your lymphoedema.

Frequently asked questions

  • Lymphoedema is caused by a problem with your lymphatic system. This causes lymph (fluid) to build up in the affected part of your body. There are many things that can cause lymphoedema including cancer, cancer treatment, infections and injury. Sometimes there’s no particular cause – it’s just something you’re born with.

  • Lymphoedema isn’t cancer. But it often develops as a result of cancer or following treatment for cancer. Cancer treatments such as surgery and radiotherapy on your lymph nodes can disrupt the normal flow of lymph. Sometimes, cancer itself can spread to your lymph nodes, leading to a blockage.

  • Lymphoedema is usually treated with a combination of treatments, including exercises, compression, specialised massage and skin care. Some people might have surgery. It’s important to seek medical help as soon as possible if you have lymphoedema symptoms because lymphoedema is easier to treat at an early stage.



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Related information

    • Lymphoedema. BMJ Best Practice. bestpractice.bmj.com, last reviewed 29 February 2021
    • Lymphoedema. British Association of Dermatologists. www.bad.org.uk, published December 2019
    • What is lymphoedema? The Lymphoedema Support Network. lymphoedema.org, last reviewed June 2019
    • Lymphoedema. Macmillan Cancer Support. www.macmillan.org.uk, reviewed 31 August 2018
    • L-Dex U400 for lymphoedema after breast cancer treatment. National Institute for Health and Care Excellence (NICE), July 2017. nice.org.uk
    • Tzani I, Tsichlaki M, Zerva E, et al. Physiotherapeutic rehabilitation of lymphedema: state-of-the-art. Lymphology. 2018; 51(1):1–12
    • McNeely ML, Peddle CJ, Yurick JL, et al. Conservative and dietary interventions for cancer-related lymphedema: a systematic review and meta-analysis. Cancer 2011; 117(6):1136–48. doi: 10.1002/cncr.25513
    • Reducing your risk of lymphoedema. Macmillan Cancer Support. www.macmillan.org.uk, reviewed 29 January 2021
    • Skin care for lymphoedema. Macmillan Cancer Support. www.macmillan.org.uk, reviewed 29 January 2021
  • Reviewed by Pippa Coulter, Freelance Health Editor, May 2021
    Expert reviewers, Henriette du Toit, Therapy Manager and Lymphoedema Therapist and Karly Armour, Occupational Therapist and Lymphoedema Therapist
    Next review due May 2024

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