Lymphoedema is the medical term for a chronic, or long-term, swelling that can affect any part of the body.

Lymphoedema is most commonly seen in an arm or a leg and is caused by the body’s lymphatic drainage system not working properly. This results in a build-up of fluid and other substances, such as protein, in the tissues. Because the fluid can’t drain away properly, the limb swells.

There are two kinds of lymphoedema. Primary lymphoedema is a condition that is present at birth – known as a congenital abnormality. Though this is mainly seen in people with leg lymphoedema, it can also cause arm swelling.

Secondary lymphoedema is caused by damage to the local lymphatic vessels and/or lymph nodes or by an overload of fluid that causes the lymphatic system to work less effectively.

This information is designed to help people who have lymphoedema or who are at risk of developing the condition. It explains the risks and how to minimise them, it points out how to recognise the early signs and symptoms of lymphoedema and it gives information about who to contact if swelling develops.

It is important to understand that secondary lymphoedema does not always just occur in the first few weeks, or even months, following surgery or treatment for another condition. The condition usually takes hold gradually and those affected have a lifelong risk of developing it.

The lymphatic system

The lymphatic system has two important jobs:

• It helps drain fluid, proteins and waste from the tissues.
• It is part of the body’s immune defences against infection.

The lymphatic system is made up of drainage channels that start just under the skin and are found all over the body. An initial mesh-like network collects fluid from the body tissues and then passes it to lymph vessels, which work in one direction only. Larger vessels, deeper in the body, pulsate to push the fluid
– by this stage known as lymph – along.

The lymph system works alongside blood circulation, but the fluid moves more slowly than blood and its movement also depends on muscle movement or exercise.

At various points, the lymph passes through special glands known as lymph nodes, like those found in the neck, armpits, or groin. Lymph nodes play an important part in the body’s defences by recognising and attacking harmful substances or unwelcome cells. When lymph has passed through the lymph vessels and nodes it drains back into the large veins in the neck. Unwanted fluid and waste can then be excreted from the body via the kidneys.

How we support you

When you visit one of our clinics we will assess your lymphoedema and work with you to agree the best course of treatment. This may include compression stockings or tights, a specialist wrap, flat knit or circular knit garments.

We will also talk to you about how you can manage your condition at home and the steps you can take to support healing. This will include tips on eating a healthy diet and exercising regularly. Some great options for people with lymphoedema include, swimming, yoga, walking and regular stretches and flexes.

Other specialist lymphoedema treatment we can provide may include manual lymphatic drainage, multi-layer lymphoedema bandaging, low level light therapy, deep oscillation treatment or intermittent pneumatic compression.

Skin care

Skin care is an important part of managing lymphoedema. Anyone who has lymphoedema or is at risk of developing it should look carefully at his or her skin
as part of the daily care of an affected limb.

The network of superficial lymphatic vessels that helps remove unwanted substances – including proteins carrying infection, allergies, or other biological hazards – lies just beneath the skin. Lymphoedema makes this network less effective, which can increase the risk of developing an infection called cellulitis.

This in turn can lead to an increase in swelling and further infection.

Broken, cracked or dry skin can create an entry point for infection. Good skin care, on the other hand, can reduce the risk of infection and the chance of
making the lymphoedema worse.

Skin inevitably thickens in patients with lymphoedema, becoming stiffer. It also becomes drier and produces more surface scale that allows bacteria to collect
and enter the body.

Skin care is important to:

1. reduce the risk of getting a skin infection (cellulitis)
2. help keep the skin soft and supple
3. prevent the skin from becoming dry and cracked.

Daily care of your swollen limb must include:

careful observation

Look for signs of redness, scratches, abrasions or cuts and treat promptly with an antiseptic cream or ointment. If the affected area changes, for instance if a sudden rash appears or the swelling gets worse, you may be suffering from cellulitis. This may involve flu-like symptoms, nausea, vomiting or fever. If this happens, seek medical attention urgently as antibiotics may help. Otherwise, continue to use the antiseptic until the skin has healed.

cleaning the skin

Wash your limb carefully, paying particular attention to any skin folds and in between fingers or toes. Carefully dry the skin, especially in skin folds or between fingers and toes, by patting rather than rubbing. (See the section on soap substitutes).

moisturising

It is important to moisturise your swollen limb each night with an appropriate emollient. Different products can be used for differing skin conditions and can be changed as the skin improves.

Emollient is the general term for a variety of substances used to re-hydrate the skin. Emollients can be used in three ways:

• bath oils
• soap substitutes
• moisturisers – creams, lotions or ointments.

Why moisturise?

Moisturising is important as lymphoedema can cause the skin to dry and thicken and develop surface cracks. Moisturisers predominantly prevent water leaving
the skin rather than introducing water into the skin; it is good to moisturise generously and often.

It is a good idea to moisturise at night, as this gives the emollient longer to work and makes it easier to dress in the morning as your limb will not be sticky. Moisturising products can also cause compression garments to deteriorate more quickly, which is another reason for applying them at night.

It is important to ensure you moisturise the whole limb and neighbouring part of the body. Apply it gently rather than rubbing it in vigorously and end
by smoothing down in the direction of the hair growth to prevent little spots (folliculitis) forming at the hair follicle.

Using the right emollient will re-hydrate the skin and help with itchy, dry skin. If an itch does not settle, consult your doctor.

Special problems that can occur in lymphoedema

Dermatitis

Eczema and dermatitis refer to a common inflammatory skin condition characterised by weeping, itchy, red skin. Contact dermatitis is caused by something that either irritates the skin through a chemical or physical process or causes an allergic reaction. Dermatitis will lead to scratching, which results in broken skin and can lead to infection. Use bland, fragrance-free emollients to reduce the risk of an allergic reaction.

Fungal infections

Common in lymphoedema, fungal infections may lead to other more serious infections, such as cellulitis if untreated. Anti-fungal powders/creams/sprays used regularly in socks and shoes are beneficial and safe. If you develop a fungal infection between the toes, sometimes known as athlete’s foot, it is important to
see your GP for the correct anti-fungal treatment.

Lymphorrhoea

Lymphorrhoea describes the leaking of lymph through the skin surface. This can happen if your limb swells suddenly, if the skin isn’t soft and supple or if the skin is fragile and thin. Lymphorrhoea increases the risk of infection.

Lymphangiectasia (lymphangioma)

This describes an extremely swollen superficial lymphatic vessel which bulges on to the skin and looks like a blister. It contains clear lymph fluid and will cause
lymphorrhoea if it is burst – which is not advisable. The use of compression therapy – bandages or hosiery – will often reduce lymphangiectasia.

Papillomatosis

This looks like nodules or warts on the skin and usually results from engorged lymphatic vessels in the skin, surrounded by hard tissue. Lymphangiectasia and
papillomatosis can arise in lymphoedema that has been left untreated for a long time.

Things you can do to help

Do:

• wear gloves when washing up or gardening and a thimble when sewing if you have upper limb lymphoedema
• wear footwear at all times if your leg is swollen and never go barefoot
• dry well in between your fingers and toes after bathing to protect from fungal infections; treat with anti-fungal powders if your skin is normally very sticky
• treat any cuts or grazes promptly by washing the area and applying antiseptic
• contact your GP urgently if your limb becomes hot or more swollen
• use an electric razor to reduce the risk of cutting your skin.

Do not (if at all possible):

• have blood samples taken from your swollen limb
• have needles inserted into your swollen limb, for instance injections or acupuncture
• allow blood pressure to be taken using your swollen limb.

Summer advice

• Protect your limb from the sun.
• Sit in the shade as much as possible.
• Use a high factor sun screen – at least SPF30.
• Avoid insect bites and use repellent sprays.
• Treat bites with antiseptics and/or antihistamines.
• Do not scratch bites.
• Try to make sure holiday immunisations are not injected into the affected limb(s).

Holiday first aid checklist

• Moisturiser or other usual emollients.
• High factor sun screen.
• Insect repellents/sprays.
• Antihistamine tablets/creams.
• Antiseptic lotions.

If you are prone to infections, carry a course of antibiotics with you in case you need them.

Swollen feet and legs

Most people who suffer from swelling in the lower limbs usually notice their feet are affected first, particularly around the ankles and the tops of the feet.

Foot/leg swelling can lead to numerous skin and nail problems, including fungal or bacterial infections, such as cellulitis, a sudden non-contagious infection characterised by redness, swelling and heat, sometimes accompanied by pain and tenderness.

Fungal infections, such as athlete’s foot are common in people who have swollen toes, where the skin becomes very moist and sweaty as the toes rub together.

This will result in the skin becoming itchy and damp, cracked or broken, providing an easy entry site for infection. Strict hygiene means washing feet daily and drying carefully, especially between the toes.

Contact your doctor immediately if you see signs of infection in the leg or foot.

The infected area is often warmer to the touch, inflamed and more swollen.

Sometimes the first sign is flu-like symptoms that may not immediately be associated with foot and leg swelling. Infection should be treated immediately with antibiotics prescribed by your GP.

Caring for feet and legs

• Examine your feet and legs daily for skin and nail problems and be meticulous about foot and nail care.
• Wash feet and legs daily and more frequently in hot weather. Use a clean towel to dry thoroughly, especially between the toes, taking care not to rub
  the skin too harshly.
• Soap is not recommended, particularly if the skin is very dry, as it can aggravate dry skin and make it more vulnerable to infection.
• Keep the skin and nail beds well moisturised with a simple cream. It should always be massaged in well but carefully, leaving no residue between the toes.
• Use nail clippers to cut toenails. Cut straight across, using an emery board to
  smooth sharp corners if necessary.
• Try to wear clean compression hosiery every day. For washing instructions or advice, ask your lymphoedema practitioner.
• Avoid socks with elastic in the tops. Cotton socks keep feet cooler and prevent fungal infections.
• Take extra care in hot weather.

Protecting feet and legs from infection

• Clean cuts or grazes immediately and treat with antiseptic solution.
• Always wear slippers or sandals at home. Be especially careful at the swimming pool or beach, wear protective shoes or boots while gardening and keep ankles and lower legs covered.
• Protect yourself from animal bites or scratches.
• Use insect repellent.
• Avoid sunburn and remember that feet are especially vulnerable when wearing sandals. Use a good sunscreen.
• Avoid having injections into your legs, abdomen or buttocks whenever possible and make sure healthcare professionals are aware of your circumstances.

Footwear

Buying shoes can be difficult and costly for people with lymphoedema. Shoes may not always fit properly after a few days.

Footwear should be comfortable and provide support. Badly fitting footwear will worsen the lymphoedema, causing the foot to become more misshapen and preventing compression hosiery from fitting well.