LymphoedemaSee all parts of this guide Hide guide parts
Lymphoedema is a chronic (long-term) condition that causes swelling in the body's tissues. It can affect any part of the body, but usually develops in the arms or legs.
Other symptoms of lymphoedema can include an aching, heavy feeling in affected body parts and difficulty moving them.
Lymphoedema can get worse if it's not treated, so you should speak to a doctor if you think you may have the condition.
Read more about the symptoms of lymphoedema and diagnosing lymphoedema
What causes lymphoedema?
Lymphoedema is caused by a problem with the lymphatic system. This is a network of vessels and glands distributed throughout the body. Its major functions are helping to fight infection and drain excess fluid from tissues.
Abnormal development of the lymphatic system, damage to it, and/or an increase in fluid in the body tissues can all lead to lymphoedema.
There are two main types of lymphoedema:
- primary lymphoedema – caused by faulty genes affecting the development of the lymphatic system; it can develop at any age, but usually occurs in early adulthood
- secondary lymphoedema – caused by damage to the lymphatic system or problems with the movement and drainage of fluid in the lymphatic system, often due to an infection, injury, cancer treatment, inflammation of the limb or a lack of limb movement
Read more about the causes of lymphoedema
Who is affected
A recent study has suggested that over 200,000 people in the UK may be living with lymphoedema.
Secondary lymphoedema has been shown to affect approximately one in five women after breast cancer treatment.
Primary lymphoedema is less common than secondary lymphoedema, and is estimated to affect around one in every 6,000 people.
How lymphoedema is treated
There is no cure for lymphoedema, but it is usually possible to control the main symptoms using techniques to 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 diet and lifestyle, and using specialised massage techniques.
Read more about treating lymphoedema and preventing lymphoedema
The build-up of fluid in the tissues of people with lymphoedema means they are more vulnerable to infection.
In particular, a bacterial infection of the skin called cellulitis is commonly reported in people with the condition.
Read more about the complications of lymphoedema
Symptoms of lymphoedema
The main symptom of lymphoedema is swelling in all or part of a limb or another part of the body, which can cause problems fitting into clothes, or jewellery and watches starting to feel tight.
At first, the swelling may come and go. It may get worse during the day and then 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
- the skin becoming hard and tight
- folds developing in the skin
- wart-like growths developing on the skin
- a leakage of fluid through the skin
When these symptoms start depends on what is causing the condition.
If lymphoedema is caused by abnormal development of the lymphatic system (a network of channels and glands distributed throughout the body that remove unwanted bacteria and particles from the body), the symptoms can develop at any age, but most commonly start during infancy, adolescence or early adulthood.
In these cases, the swelling may start on one side of the body to begin with, although the other side will usually become swollen as well over time – particularly the lower leg.
If lymphoedema is caused by damage to the lymphatic system, the symptoms can develop at any time. For example, if your lymphatic system is damaged due to treatment for breast cancer, lymphoedema may not develop for several months or even years.
Read more about the causes of lymphoedema
When to seek medical advice
If you are at risk of developing lymphoedema because you have had treatment for cancer, you may be offered an assessment for the condition as part of your treatment aftercare plan. Speak to your consultant or specialist nurse if you have any concerns.
If you think you may have lymphoedema, but not as a result of treatment for cancer, see your GP.
Read more about diagnosing lymphoedema
Causes of lymphoedema
There are two types of lymphoedema, called primary and secondary lymphoedema, which have different causes.
The main causes of primary and secondary lymphoedema are outlined below.
Primary lymphoedema is caused by alterations (known as mutations) in genes responsible for the development of the lymphatic system (a network of channels and glands distributed throughout the body that help fight infection and remove excess fluid from the body).
These "faulty" genes result in the parts of the lymphatic system responsible for draining fluid not developing properly or not working as they should.
Primary lymphoedema usually runs in families, but not every child born to someone with the condition will develop it themselves.
Secondary lymphoedema develops in people who previously had a normal lymphatic system.
It can have a number of different causes. Some of the most common causes are explained below.
Surgical treatment of cancer
Cancer cells can spread around the body through the lymphatic system, so part of the treatment for the condition can involve surgically removing sections of the lymphatic system potentially containing cancerous cells.
Although the surgeon will try to ensure limited damage to your lymphatic system, this isn't always possible.
There is a particular risk of lymphoedema occurring as a complication of treatment for:
- breast cancer
- melanoma skin cancer
- gynaecological cancers – such as cervical cancer and vulval cancer
- genitourinary cancers – such as prostate cancer or penile cancer
Radiotherapy uses controlled doses of high-energy radiation to destroy cancerous tissue, but it can also damage healthy tissue.
If it's necessary to use radiotherapy to destroy cancerous cells in your lymphatic system, there is a risk that the system could become permanently damaged and unable to drain fluid properly.
In some cases, an infection can cause lymphoedema.
Cellulitis is a bacterial skin infection that can cause lymphoedema. Severe cellulitis can damage the tissue around the lymphatic system, causing it to become scarred.
Another infectious cause of lymphoedema is a parasitic infection called filariasis. This is a common cause of lymphoedema worldwide, but is not a risk in the UK.
Conditions that cause tissue to become inflamed (red and swollen) can also permanently damage the lymphatic system. Medical conditions that can cause lymphoedema include:
- rheumatoid arthritis – which causes pain and swelling in the joints
- eczema – which causes the skin to become itchy, reddened, dry and cracked
Venous diseases, which affect the flow of blood through the veins, can cause lymphoedema in some people. The abnormal or damaged veins can result in excessive fluid leaking from the blood into the tissue spaces. This overwhelms and eventually exhausts the parts of the lymphatic system responsible for draining this fluid.
Some venous diseases that can lead to lymphoedema include:
- deep vein thrombosis (DVT) – a blood clot in one of the deep veins in the body
- varicose veins (swollen and enlarged veins) – where poor drainage of blood in the veins causes higher vein pressure, and more fluid passes into the surrounding tissues
People who are obese, particularly those who are severely obese, have an increased risk of developing lymphoedema. It’s not clear exactly why this is, but it has been suggested that the extra fatty tissue affects the lymphatic channels in some way, reducing the flow of fluid through them.
In these cases, weight loss is an important part of treatment and even just starting to lose weight can make a big difference.
Trauma and injury
In a small number of cases, lymphoedema can be caused by an accidental injury to the lymphatic system. For example, lymphoedema can sometimes occur after extensive soft tissue loss or bruising.
Movement and exercise helps lymph drainage, as muscle activity surrounding the lymphatic vessels massages fluid into and along them. Therefore, reduced movement can lead to lymphoedema, because the fluid in the lymphatic system does not get moved on, causing swelling.
For example, people who are unable to move fully for a long time due to an illness or surgery may be at risk of lymphoedema.
If you're being treated for cancer and are at risk of developing lymphoedema, you'll be monitored for the condition afterwards. Otherwise, see your GP if you experience symptoms of swelling.
There are a number of specialist lymphoedema treatment centres in the UK. Your doctor may refer you to one of these for further assessment. A list of treatment centres near you is available from the Lymphoedema Support Network.
In many cases, it's possible to make a diagnosis of lymphoedema by:
- asking about your symptoms and medical history
- examining the affected body part and measuring the distance around it to see if it's enlarged
Although not necessary in most cases, further tests may occasionally be used to assess and monitor your condition. These tests are explained below.
Measuring limb volume
In some cases, tests to calculate the volume of an affected limb may be carried out. These may include:
- a tape measure to measure the circumference of the limb at certain intervals, to calculate its volume
- water displacement – where you place the affected limb in a tank of water and the amount of water that is displaced is measured to calculate the volume of the limb
- perometry – infrared light is used to measure the outline of an affected limb and calculate its volume
During a bioimpedance test, electrodes (small metallic discs) are placed on different parts of your body. The electrodes release a small and painless electric charge that is measured using a handheld device. Changes in the strength of the current can indicate the presence of fluid in your tissue.
Imaging tests may also be used to help diagnose and monitor lymphoedema. These include:
- a lymphoscintigraph – you are injected with a radioactive dye that can be tracked using a special scanner; this shows how the dye moves through your lymphatic system and can check for any blockages
- a magnetic resonance imaging (MRI) scan – which uses a strong magnetic field and radio waves to produce detailed images of the inside of your body
- an ultrasound scan – which uses high-frequency sound waves to create an image of the inside of your body
- a computerised tomography (CT) scan – which uses X-rays and a computer to create detailed images of the lymph nodes
These scans can be used to create a clearer picture of the affected tissue.
The recommended treatment for lymphoedema is decongestive lymphatic therapy (DLT).
DLT is not a cure for lymphoedema, but it can help control the symptoms. Although it takes time and effort, the treatment can be used to effectively control your lymphoedema.
Decongestive lymphatic therapy (DLT)
There are four components to DLT:
- compression bandages and garments – to move fluid out of the affected limb and minimise further build-up
- skin care – to keep the skin in good condition and reduce the chances of infection
- exercises – to use muscles in the affected limb to improve lymph drainage
- specialised massage techniques – known as manual lymphatic drainage (MLD) – to stimulate the flow of fluid in the lymphatic system and reduce swelling
Each of these components is described in more detail below.
DLT usually begins with an intensive phase of therapy, during which you may receive daily treatment for several weeks to help reduce the volume of the affected body part.
This is followed by the second phase, known as the maintenance phase. During this, you will be encouraged to take over your own care by carrying out simple self-massage techniques, wearing compression garments and continuing to exercise. This phase of treatment aims to maintain the reduced size of the affected body part.
You may then have reviews every few months to check how your treatment is progressing.
Compression bandages and garments
Unlike the blood circulation system, there is no central pump, such as the heart, to move fluid around the lymphatic system. Instead, the lymphatic system uses the massaging effect of surrounding muscles to move the fluid.
If you have lymphoedema, you will have special bandages or garments (such as sleeves, gloves, stockings or tights) fitted over any affected limbs. These will support the affected muscles during exercise and encourage them to move fluid out of the affected limb.
These may also be applied after a session of MLD, to prevent fluid accumulating in the limb again. This use of compression bandages and garments is known as multilayer lymphoedema bandaging.
Velcro wraps may be used instead of bandages and have the advantage that the person with lymphoedema can apply them themselves.
You will be taught how to correctly apply your own bandages and compression garments, so you can continue to use them during the maintenance period.
Taking good care of your skin is important, because it will reduce your risk of developing an infection, such as cellulitis.
Read our page on preventing lymphoedema for more skin care advice.
Movement and exercises
Your lymphoedema care team will help devise an exercise and movement plan designed to strengthen and stimulate the muscles involved in lymph drainage. They will also help you to lose weight, if you are overweight. This will be tailored to your requirements and ability.
Your plan may involve specific limb exercises, as well as gentle activities that involve the whole body, such as swimming, cycling and walking.
To begin with, you may receive specialised massages called manual lymphatic drainage (MLD) – usually carried out by a specialist therapist – to move fluid from the swollen areas into working lymph nodes, where it can be drained.
Your lymphoedema therapist will also teach you a range of simpler massage techniques that you or your carer can use during the maintenance phase of treatment, to help keep the swelling down. These self-massage techniques are known as simple lymphatic drainage (SLD).
In a small number of cases, surgery may be considered to treat lymphoedema. There are three main types of surgery that may be useful for the condition:
- the removal of sections of excess skin and underlying tissue (debulking)
- the removal of fat from the affected limb (liposuction) – see below
- the restoration of the flow of fluid around the affected section of the lymphatic system – for example, by connecting the lymphatic system to nearby blood vessels (lymphaticovenular anastomosis)
These treatments may help to reduce the size of areas of the body affected by lymphoedema, but some are still experimental – particularly lymphaticovenular anastomosis – and are not in widespread use.
Liposuction is where a thin tube is inserted through small incisions in the skin to suck fat out of tissue. It can be used to remove excess fat from an affected limb to help reduce its size.
Once the surgery is complete, you will have to wear a compression garment on the affected limb day and night for at least a year to help keep the swelling down.
The National Institute for Health and Care Excellence (NICE) states that liposuction for chronic (long-term) lymphoedema appears to be safe, and may be effective in the short term. However, NICE says there is not enough evidence of its long-term effectiveness and safety.
Access to liposuction for lymphoedema may be limited, depending on what is available from your local NHS Clinical Commissioning Group (CCG).
Complications of lymphoedema
Cellulitis is the most common complication of lymphoedema, but psychological issues can also occur as a result of the condition.
These complications are explained below.
Many people with lymphoedema experience repeated episodes of cellulitis (also known as erysipelas). Cellulitis is a bacterial infection of the deep layer of skin (dermis) and the layer of fat and soft tissues (the subcutaneous tissues) that lie underneath the skin. Cellulitis can occur as a result of lymphoedema and can also cause the condition.
Symptoms of cellulitis can include:
- redness and a feeling of heat in the skin
- pain in the affected area
- a high temperature (fever)
Cellulitis can usually be successfully treated with antibiotics, although severe cases may need to be treated in hospital.
In some cases, you may be provided with a short supply of antibiotic tablets to use as soon as you notice symptoms of cellulitis. Alternatively, you may be given a long-term course of antibiotics to take to prevent infection.
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 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.
Talking to other people who also have lymphoedema can be reassuring and decrease feelings of isolation, stress and anxiety. The Lymphoedema Support Network offers information and advice, and can put you in touch with a support group in your area.
Remember: if you persevere with your treatment plan, your symptoms should eventually become less noticeable.
Read more about treating lymphoedema
It’s not possible to completely prevent lymphoedema, but the following steps may help reduce your chances of developing the condition.
If you already have lymphoedema, this advice may stop it getting worse.
The part of your body affected by lymphoedema is more vulnerable to infection of the build-up of fluid within the tissues. 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:
- not having injections or blood pressure readings in the affected area whenever possible
- treating cuts and scratches immediately with an antiseptic cream
- using insect repellents to prevent insect bites
- moisturising the skin daily to keep it supple – your GP can prescribe a suitable cream
- avoiding very hot baths and showers – the heat from saunas, steam rooms and sun beds may also increase the swelling
- using sun cream with a high sun protection factor (SPF) to prevent sunburn
- wearing gloves for gardening and household tasks to avoid cuts, if your upper limbs are affected
- using anti-fungal powder to prevent fungal infections in your skin or feet, if your lower limbs are affected
- cutting your nails with nail clippers
- seeing a chiropodist for foot and nail care – but make sure you tell them you have lymphoedema
- wearing shoes that fit correctly and provide support on the top of your feet, if your lower limbs are affected
- using an electric razor if you need to shave to reduce the risk of cutting yourself
- not wearing tight-fitting clothes or jewellery
Contact your GP as soon as possible if you develop symptoms of a possible skin infection, such as redness and a feeling of heat in the skin.
Adopting a healthy lifestyle may also help reduce your risk of developing lymphoedema, and may help control the condition if you already have it.
- eating a healthy diet
- maintaining a healthy weight
- exercising regularly
20 February 2023
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