Lymphoedema is a long-term health condition that causes swelling in the body’s tissues. According to the British Lymphology Society, it affects around 430,000 people in the UK.
Lymphoedema can be uncomfortable and upsetting to live with. However, while there’s currently no cure, there are plenty of things that can help people manage their symptoms.
Here, we’ll take a closer look at what lymphoedema is, as well as symptoms, causes, and ways to cope.
What is lymphoedema?
Lymphoedema is a long-term chronic health condition that causes swelling in the body’s tissues. It can affect any area of the body, but most commonly the arms or legs.
Lymphoedema develops when a person’s lymphatic system isn’t working properly, which can be caused by a wide range of factors – including certain cancer treatments. The lymphatic system is a network of glands and channels in the body that are responsible for fighting infection and removing excess fluid.
There are two types of lymphoedema, primary and secondary lymphoedema, which have different causes. Primary lymphoedema is less common than secondary lymphoedema – and is estimated to affect around one in every 6,000 people.
What are the symptoms of lymphoedema?
Lymphoedema is mainly characterised by swelling in a limb or other area of the body. At first, the swelling may come and go, and be soft, and easy to push in – often leaving a dent. However, without treatment, swelling can become more serious and difficult to manage.
According to the NHS, other symptoms of lymphoedema in an affected body part can include…
- An achy, heavy feeling
- Repeated skin infections, such as cellulitis
- Struggling with movement
- Folds developing in the skin
- Wart-like growths developing on the skin
- Fluid leaking through the skin
- Developing hard, tight, or thickened skin
Lymphoedema in the head or neck can also cause swelling and heaviness in the face, throat, or mouth, and make it difficult to speak or swallow.
Beyond discomfort, lymphoedema can be upsetting to live with and take its toll on mental health. Some people find that the swelling impacts their body image, which research has linked with psychological distress.
What causes lymphoedema?
Lymphoedema happens when the lymphatic system isn’t working properly and there can be several reasons why this is.
We’ll outline some of the causes of primary and secondary lymphoedema below.
Primary lymphoedema
Primary lymphoedema happens when there are mutations in the genes responsible for the development and function of the lymphatic system – specifically the areas that drain fluid.
According to the NHS, primary lymphoedema often runs in families. However, having a family history of lymphoedema doesn’t necessarily mean you’ll develop it. Primary lymphoedema can occur at any age, but usually presents during early adulthood.
Secondary lymphoedema
Secondary lymphoedema occurs in people who’ve previously had a normally functioning lymphatic system, which has become damaged.
The NHS lists several potential causes and risk factors for developing secondary lymphoedema, which we’ll cover below.
Treatment for cancer
Treatment for cancer, including surgery and radiotherapy, is a risk factor for developing lymphoedema. For example, research has found that secondary lymphoedema affects around one in five women after breast cancer treatment.
Surgery for cancer sometimes involves removing sections of the lymphatic system. The surgeon will try to limit damage to the lymphatic system, but this isn’t always possible. The risk of lymphoedema increases with cancer treatment where lymph glands are removed. This can include treatment for breast, skin, cervical, and prostate cancer.
Radiotherapy, which uses controlled doses of radiation to destroy cancer cells, can sometimes damage healthy tissue in the process. If radiotherapy is used to destroy cancerous tissue in the lymphatic system, there’s a risk that it could become damaged and unable to drain fluid properly.
Infections
Cellulitis is a common symptom of lymphoedema. However, in some cases, it can also cause lymphoedema. Severe cellulitis can damage tissue surrounding the lymphatic system and cause scarring.
Venous diseases
Venous diseases can sometimes cause fluid to overflow into the body’s tissues. Over time, this can overwhelm and eventually exhaust the areas of the lymphatic system responsible for draining fluid.
Examples of venous diseases that can increase the risk of lymphoedema include deep vein thrombosis and varicose veins.
Obesity
Obesity is considered a risk factor for secondary lymphoedema, particularly severe obesity.
Experts are currently unsure why obesity can cause swollen body parts, but it’s thought that excess fatty tissue may affect lymphatic channels and reduce the flow of fluid through them.
Trauma and injury
Lymphoedema can sometimes be caused by injury to the lymphatic system – for example, following a car accident that causes extensive bruising. However, this is rare.
Immobility
Staying active is important for allowing the lymphatic system to drain properly because muscle activity encourages fluid flow.
How is lymphoedema diagnosed?
If lymphodema isn’t identified and treated quickly, it can progress and lead to complications – such as skin infections like cellulitis – so it’s important to speak to your GP if you have any concerns. If you’re being treated for cancer and have a higher risk of developing lymphoedema, you may be monitored for the condition during and after treatment.
According to the NHS, GPs are usually able to diagnose lymphoedema by asking about your symptoms and medical history, and examining the affected area. In some cases, if diagnosis isn’t clear, they may refer you to a specialist lymphoedema treatment centre for further tests.
Most people won’t need further diagnostic tests, but they may sometimes be used to continue assessing and monitoring your condition. This can include imaging tests such as an MRI or ultrasound scan and tests to measure limb volume.
You can read more about how lymphoedema is diagnosed on the NHS website.
How is lymphoedema treated?
The main recommended treatment for lymphoedema is decongestive lymphatic therapy (DLT). DLT isn’t a cure, but it can be effective for managing symptoms.
DLT involves four main components. These are …
- Compression bandages – which work to move fluid out of the affected area and minimise future build-up
- Skin care – to help keep skin healthy and reduce the risk of infection
- Movement and exercises – to work muscles in the affected area to improve lymph drainage
- Specialised massage techniques – known as manual lymphatic drainage, which reduce swelling, and encourage the flow of fluid in the lymphatic system
DLT can be intense and may involve daily treatment for several weeks to help reduce the size of an affected body part. This is followed by a second, ‘maintenance’ phase, which is centered around home remedies like massage and exercise.
Those having DLT will need to be reviewed every few months to monitor their progress. You can find out more about DLT and what it involves on the NHS website.
In some cases, surgery may be used to treat lymphoedema, however, this is rare. The two main types of surgery include liposuction (removal of fat from the affected area) and surgery to help restore the flow of lymph fluid.
How can I reduce my risk of lymphoedema?
It’s not currently understood why some people develop lymphoedema and others don’t. However, while it’s not possible to completely prevent lymphoedema, experts recommend things you can do to reduce your risk.
If you already have lymphoedema, the tips below can also help prevent it from getting worse.
Take care of your skin
Any area of the body affected by lymphoedema is more susceptible to infection due to the buildup of fluid within tissues, which creates an environment for germs to thrive.
Lymphoedema can also cause skin dryness, itchiness, and irritation, often leading to cracks, breaks and, potentially, infection.
Cellulitis is a bacterial infection of the deep layer of skin (dermis) that’s common in people with lymphoedema. But, skin infections like cellulitis can also damage the lymphatic system and cause lymphoedema to develop in the first place – so it’s important to do what you can to reduce your risk.
According to the NHS, some things you can do to reduce your chances of developing skin infections include…
- Avoiding injections or blood pressure readings in the affected area wherever possible
- Immediately treating cuts and scratches with an antiseptic cream
- Using insect repellents to avoid insect bites
- Keeping skin clean and dry and using a soap alternative, such as E45 wash
- Wearing high protection factor sunscreen to prevent sunburn
It’s also worth knowing the warning signs and symptoms of cellulitis, as early treatment with antibiotics can help to prevent the condition becoming more serious.
Prevent pressure on the affected area
It’s advisable to avoid pressure on areas of the body that are at higher risk of lymphoedema, such as the arms and legs, as this can impact the flow of lymph fluid.
For example, it can help to avoid wearing tight jewellery, rings, watches, and tight waistbands.
Maintain a healthy weight
Being overweight is one of the biggest risk factors for lymphodema, so working to maintain a healthy weight is one of the best things you can do.
Simple habits like upping your step count and eating a balanced diet can make all the difference. Adding regular exercise into your routine can be particularly beneficial for reducing your risk of lymphoedema – and there are a few reasons why.
As well as helping you maintain a healthy weight, muscle activity improves the flow of lymph fluid around the body, improves joint movement, and encourages lymph fluid to drain. Physical activity also causes you to breathe deeper, which further encourages the flow of lymph fluid. Breathing exercises on their own, or as part of yoga or Pilates, can also be useful.
Experts advise increasing exercise intensity gradually to allow your body to adapt. If you have lymphoedema, you may also need to be more careful with certain types of exercise, such as contact sports and weightlifting, as these are more likely to injure skin or muscles. It’s important to speak to your GP before introducing new exercise to your routine if you’re unsure.
Take care when travelling
There are certain aspects of travel that can increase the risk of lymphoedema and exacerbate existing symptoms. This can include physical inactivity, low cabin pressure, carrying heavy luggage, dehydration, and changes in climate.
For this reason, it’s important to take care while travelling. For example, Macmillan Cancer Support recommends that you…
- Avoid sitting in the same position for a whole journey
- Make regular stops and walk around during long car journeys
- Wear comfortable clothing and avoid tight-fitting clothes
- Move around often and do gentle stretching exercises if you’re on a plane or train
- Use a suitcase on wheels that you can pull, to avoid extra muscle strain
- Wear travelling compression socks on a long flight
What support is there for people living with lymphoedema?
If you have lymphoedema and feel you’d benefit from some additional support, organisations such as the Lymphoedema Support Network and The British Lymphology Society offer everything from helplines to everyday advice for people living with lymphoedema.
Cancer Research UK has more resources and organisations for lymphoedema on their website.
Final thoughts…
Lymphoedema can be difficult and upsetting to live with, but it’s important to remember that you’re not alone. Plus, while there’s currently no cure for lymphoedema, simple steps like exercising regularly and practising good skin care, can make all the difference when it comes to managing symptoms.
For further reading, head over to the general health section of our website. Here, you’ll find information on everything from gut and heart health to longevity tips and important health checks for over 50s.
Do you have any experience of lymphoedema that you’d like to share? We’d be interested to hear from you in the comments below.
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