On this page
- What is the lymph system?
- What is Lymphoedema?
- Coming to terms with lymphoedema
- How treatment can help lymphoedema
- Cellulitis or Acute Inflammatory Episode
- The importance of weight control
- Skin care
- How to apply moisturising cream to the leg
- Helpful hints if you have leg swelling
- Compression garments
- How clothing and posture can help lymphoedema
- Breathing exercises
- Leg exercises
- Group 1
- Group 2
- Useful addresses and phone numbers
This information is provided as you are under the care of the Leeds Lymphoedema Service
The aim is to:
- Describe lymphoedema and outline the treatment that is available.
- Give information about what to expect when you attend the clinic for treatment.
- Summarise the self-treatment methods that you can use.
The treatment will be individual to your own needs and may differ from other people’s experiences. Your therapist will provide you with the information that you need throughout your treatment programme. You will be shown how to control the problem yourself and there are no known side-effects to the therapies that are used. You will find information about what to do if there are any changes in your lymphoedema.
If you are unclear about any of this guidance or have any concerns about your care, please contact the number below.
What is the lymph system?
The lymph system is an important part of the body’s drainage system and is also one of its main defences against infection.
The lymph system is made up of
- fluid (lymph)
- lymph vessels (drainage tubes for the lymph)
- lymph nodes (glands)
Lymph vessels provide a way for removing the water, proteins and waste products from the tissues of the body. The blood supplies every part of the body with oxygen, nutrients and water through blood vessels known as capillaries. While some fluid drains back through the blood in veins, the lymph vessels provide a separate and important set of drainage pathways. When fluid passes into the lymph system it is described as lymph which is unlike blood in appearance and looks more like water.
The lymph moves on from tiny vessels (the initial lymphatics) to larger and deeper vessels and eventually flows back into the bloodstream. There are valves and muscles in the larger lymph vessels to help move the lymph along. The largest lymph vessels are deep inside the body and close to the main blood vessels and nerves. The lymph is eventually drained back into veins that lie under the middle part of each collar-bone. Once back in the bloodstream, the extra fluid leaves the body via the kidneys.
The lymphatic system plays an important part in the body’s defence system (immune system) and it contains a number of special cells that help to destroy unwanted material. When lymph passes through the lymph nodes, harmful substances are recognised and attacked. During cancer treatment, lymph nodes are often surgically removed and investigated to check whether the cancer has spread to them. This information will help the doctors to plan further treatment.
What is Lymphoedema?
Lymphoedema (pronounced limf-oh-deema) means that you have a visible swelling in a part of your body that has been there for more than three months. Swelling is usually in one or more of the limbs but it can be present in any part of the body.
‘Oedema’ is from a Greek word meaning swelling and lymphoedema happens because part of the body (the lymph system) is unable to work properly. Around 100,000 people in the United Kingdom are known to suffer from lymphoedema (Ref.1).
This condition can develop following cancer or its treatment (Ref. 2), but there can be other causes for the swelling. It is a problem that can start at any time of life although more people develop lymphoedema as they become older. It is usually a mild swelling that can be managed, but some people develop a more serious swelling and need more intensive treatment.
Drugs and surgery do not usually offer the best way to treat the condition. A number of physical therapies are used together on a regular basis and have been shown to be the most effective way to treat lymphoedema.
Despite recent advances in care, there is still no cure for lymphoedema. You can learn how to do some of the treatments yourself and they will help to control and reduce the swelling if they are done on a daily basis. Although it does not usually cause serious illness or pain, it can get worse without treatment and effective self-management.
Chronic swelling causes changes in the appearance and softness of the skin and the tissues underneath. This is because the lymph system can no longer drain away all the fluid and waste products usually produced within the body. This causes a build-up of fat and solid tissue under the skin. As a result the swollen part can feel hard and solid. A build-up of fatty tissues causes the tissues to feel like dough or rubber. Sometimes the chest, abdomen or breast can become swollen. This is known as midline lymphoedema.
When there is a known cause it is called secondary lymphoedema.
Causes of secondary lymphoedema include
- injury
- infection of the skin and tissues
- poor blood drainage through the veins
- inability to exercise or move the limb
- cancer or cancer treatment
- surgery or radiotherapy to the lymph nodes
When lymphoedema develops after cancer treatment, it often appears within the first year but it may not develop until some years afterwards. If swelling develops some time after treatment, it is usual to carry out further medical tests to make sure that this is not a sign that your cancer has come back.
Lymphoedema can develop in people who have not had cancer treatment and when there appears to be no obvious cause for the swelling. A skin infection (cellulitis) is sometimes the reason why people develop lymphoedema. It can affect men, women and children at any age and at any time of life
References
- Moffat CJ, Franks PJ, Doherty DC, Williams AF, Badger C, Jeffs E, Bosanquet N, Mortimer PS. Lymphoedema: an underestimated health problem. Quarterly Journal of Medicine 2003; 96:731-8
- Pain SJ and Purushotham AD. Lymphoedema following surgery for breast cancer. British Journal of Surgery, 2000: 87, 9: 1128-41 *
*A summary of these papers is available from the Lymphoedema Office on request.
Coming to terms with lymphoedema
How lymphoedema can affect your feelings
Lymphoedema can have an effect on your personal and social life. It may make you feel angry and upset. You may also feel depressed and isolated. Even if you know what to do to help yourself, there may be times when you feel unable to cope and out of control. There are many people with lymphoedema who share the same feelings. It can sometimes help if you are able to talk about what is troubling you. If you have people around who want to help you-try to work out how they can do this. This could mean assisting you with the self-treatment or sharing some of the household jobs.
If you feel you want to talk to someone outside your family or friendship circle, your lymphoedema therapist may be able to help. They have an understanding of the sort of problems you face and may be able to suggest some solutions or refer you to somebody who can help you. You may prefer to talk to someone with lymphoedema.
The swelling may have affected how you feel about your body. You may have lost your confidence. The ways you are close to your partner including your sexual relationship, may need to change in some ways. When talking about the challenges you face together you may find ways to get around the problems. There may be advice and contacts available through the lymphoedema clinic that can help you. You and your partner are welcome to make an appointment at the clinic if you wish to discuss personal issues relating to the lymphoedema.
There is a national patient support group that has a telephone helpline. This is called the Lymphoedema Support Network (see contact list). As you get to know more about the condition and how you can help yourself, you may feel more positive and in control.
There may still be times when you feel low, especially if you are facing other problems in your life. When this happens, it may be helpful to talk through how you feel with someone in whom you feel happy to confide.
How treatment can help lymphoedema
Although there is no cure for lymphoedema, there are ways to improve the problem and help you deal with it. A combination of physical treatments used together can help to control and reduce the swelling. Research into lymphoedema treatment is limited and it is not yet possible to provide strong evidence for some of the advice and treatment that is used. However, the treatments that are available have helped many people, especially when it is continued through self-treatment.
Many of the problems that develop can be prevented if treatment can be started at an early stage. Treatment is designed to improve the lymph drainage and to prevent complications that will make the swelling worse.
This is done by stimulating other healthy lymph vessels in the body to work better.
The four corner-stones of treatment are
- skin care
- compression garments
- exercise
- simple lymphatic drainage (self-massage)
This is the way that swelling can be kept under control and it is made up of treatment methods that you can do for yourself. At first a specialist therapist or nurse will complete an assessment and talk to you about what can be done. You will have the chance to talk about the problems that trouble you the most and the sort of treatment that is important for you.#
Sometimes more intensive treatment is needed to reduce the swelling. This treatment is often called Decongestive Lymphatic Therapy (DLT). You would need to attend the clinic more regularly for around two to three weeks if you have this treatment. Information about DLT will be available if you need this treatment.
The aim of all treatment is to help you feel confident about how you can self-manage your condition. It may take several weeks or even months before you notice a difference in size, especially if you have had your swelling for a number of years. Even if improvement is slow, the swollen area should start to feel more comfortable as the tissues begin to soften.
Cellulitis or Acute Inflammatory Episode
Cellulitis (pronounced sell-you-lite-us), also known as an Acute Inflammatory Episode (AIE), is an infection that affects the skin and the tissues underneath. It is a common problem with lymphoedema because the immune system is not working as well as it should and cannot fight the infection. Cellulitis is one of the main reasons why lymphoedema can develop or why it gets worse and it is important to take every precaution to prevent an infection.
Cellulitis often causes you to feel unwell, as though you are going down with ‘flu.
You may also have the following symptoms
- red skin, red blotches or red streaks;
- increased heat and swelling;
- pain.
The treatment is a minimum two week course of antibiotics and you need to see your GP as soon as possible so that these can be provided.
When you have cellulitis, it is best not to wear your compression garment nor to continue with the exercises or massage until you have sought advice from your therapist, GP or district nurse. This could spread the infection and make you even more unwell. It is better to rest and keep the swollen part well supported and comfortable. If you are lying in bed, rest the swollen limb as much as you can on one or two pillows until the infection has settled down and you start to feel better. Although you may not feel like eating it is important to drink plenty of water.
Severe attacks that cause fever, shivers and vomiting may need to be treated using antibiotics that are injected directly into one of the veins. This may mean that you need to be admitted to hospital.
If you continue to feel unwell and have difficulty controlling the swelling after you have completed the course of antibiotics, you may still be suffering from a grumbling form of cellulitis. This is treated with a low dose of antibiotics (called prophylactic antibiotics) that are taken every day.
The importance of weight control
Swelling is more difficult to control if you are overweight because the fluid cannot move easily through fat tissue. If you are concerned that this is a particular problem for you, you can judge by taking your waist measurement. As a general rule, your waist circumference should be less than or the same as half your height. You can also check your body weight but this will increase if you have a lot of swelling. The best way to keep your weight under control is to follow a normal healthy diet.
Some ways you can do this are to
- Reduce the amount of high fat and processed foods.
- Eat plenty of fresh fruit and vegetables.
- Water and fruit juices are better alternatives to tea, coffee and sugary drinks.
Also
- Restricting your water intake is not recommended. This will not help to reduce the lymphoedema and could be harmful.
- Although there is no evidence to suggest that lymphoedema is related to salt in the diet, it should not be necessary to add salt to food ready for eating.
- Certain foods and drinks (such as alcohol and spicy foods) can increase swelling in some people.
Skin care
Skin care is very important in order to
- Prevent cellulitis.
- Keep the skin in good condition.
- Prevent the skin changes that can happen with lymphoedema.
Over time, the skin can become dry and less supple. This will mean that there is more risk of developing small breaks and cracks on the skin surface. Bacteria can enter through the breaks in the skin and this can cause cellulitis. Good skin care will help to prevent this problem.
Here are ways that you can care for your skin
- Apply unperfumed moisturising cream once and if possible twice a day.
- Treat any cuts or grazes as soon as you can. Clean the skin well and then use antiseptic solution. If you suspect the start of a skin infection, seek medical attention as soon as possible. If a skin infection is present you will need to take a course of antibiotics.
- Whenever possible, injections, taking of blood samples or blood pressure should be avoided in the swollen limb. Although there is as yet little evidence to clearly demonstrate the connection, some people report that these procedures have been followed by cellulitis and more swelling.
- Use insect repellents to prevent bites.
- If you have pets, treat them to control fleas.
- Use high factor sunscreen (factor 50) to protect the swollen skin.
- Avoid hot water and saunas.
- Use layers of clothing such as thermal vests or body warmers to keep you warm. Avoid sitting too close to a fire or using a heat pad on the swollen area
- Use warm water when taking a bath or shower rather than hot.
Fungal infections can develop in any area where two skin surfaces touch each other such as underneath the breasts, in between the toes or in the skin folds.
Avoiding fungal infections is easier than curing them. You should inspect the skin daily, wash and thoroughly dry in skin folds. You can use an anti-fungal powder if there are any signs of the skin becoming itchy, irritated or beginning to peel.
How to apply moisturising cream to the leg
Use an unperfumed moisturising cream
- Use upward outward strokes when applying cream. Put the cream on the top of the thigh first, directing strokes upwards, towards the outside of the leg as shown.
- When you reach the knee, apply the cream around all the knee. Take the direction upwards and towards the outside of the thigh.
- Continue all over the lower leg, using upward and outward strokes.
- Finish off by applying moisturising cream to the foot and toes, continue the upward and outward strokes up the leg.
- When you have finished, smooth the hairs on your leg with a downward stroke.
Helpful hints if you have leg swelling
- Wear protective clothes and footwear on your legs and feet when gardening or outdoors.
- Avoid walking around barefoot.
- Use an electric razor if shaving.
- Relax with your swollen leg lifted and supported off the floor. Make sure that there is support along the length of the leg.
- Some people find that sleeping with a block under the foot of the bed to raise it five centimetres (two inches) will help to reduce the swelling if it is in the early stage.
- Avoid long periods of walking over pavements or hard ground. Try to walk on grass or softer ground.
Information on footwear
When walking, wear comfortable and supportive shoes. Shoes that have low heels will help you to walk with more comfort and confidence. A lace up shoe or boot provides support to the foot and helps to reduce the swelling. Court shoes or sandals are to be avoided as they allow fluid to bulge on top of the foot or between the straps. Although trainers may seem a good option they are likely to make feet hot and sticky. This increases the risk of fungal infections such as athlete’s foot so extra care is needed. Wear slip on shoes to protect your feet in changing rooms and on the beach when you are preparing to go into the water. Try to find a pair of indoor and outdoor shoes that are comfortable and so that you can change your footwear during the day.
Compression garments
Compression garments are available to support swelling in all parts of the body and the usual types are sleeves, stockings or tights. They apply pressure to the skin and provide support to reduce the swelling.
Compression garments apply pressure through the skin but can cause damage in people who
- Have poor circulation.
- Have trouble with cold feet.
- Have poor sensation in their feet.
If you have any of these problems, you should ask your lymphoedema therapist for advice before you start to use the garments.
How do compression garments work?
Compression garments prevent fluid from building up in the tissues and give support to the muscles as they work. They provide pressure to help the muscles to pump fluid away from the swollen area during movement and exercise. Compression garments do not work well if they do not fit properly or if they are old and worn.
Guidelines for garments
Your garment should cover all the areas that are swollen. This could mean wearing a combination of supports such as a toecap with a leg stocking. You will find it easier to put on your garment first thing in the morning when there is less swelling. Aim to wear the garment all day and avoid taking it on and off as this allows the swelling to increase. You do not usually need to wear your garment when you are resting in bed unless you are advised to do so by your therapist.
Hints to help you put on your garment
- It is easier to apply the garment over cool dry skin.
- Silk linings and other equipment are available that help the stocking to slide on. Ask your lymphoedema therapist for information about these.
- Wearing a pair of household rubber gloves or rubber fingered gardening gloves may help you to apply your compression garment and also to get an even spread of material.
- A light sprinkling of nonperfumed talcum powder on the skin may help the garment to slide on.
- Do your skin care regime at night after you have removed your garment. This helps to prevent damage to your garment and ensures that the cream soaks into your skin.
Checklist for the day when wearing a compression garment
- Is the material spread equally along its length so that there is even pressure?
- Are there any creases or wrinkles? These will act like elastic bands and cause fluid to build up behind them. This can also happen if you roll the top of the stocking over. If the stocking seems too long, use a rubber glove to ease the extra material evenly down the limb until the length is right.
- Is the compression garment tight and painful? Take off the garment straight away and seek advice from your therapist, GP or district nurse.
- If you notice that the toes turn a dusky purple or blue colour take off the garment straight away and seek advice from your lymphoedema therapist, GP or district nurse.
- Does your leg become uncomfortable when you are wearing your stocking? This may be because you are not moving your limb enough to stimulate the circulation. Try to exercise and move. If discomfort still persists – take off the compression garment and seek advice from your GP or Lymphoedema Team.
- If the garment feels loose this usually means that it is not fitting well and will not do its job. You need to go back to be re-measured for a new garment.
- It is important to wear your most recently supplied garments to ensure your limb gets the best support.
- On receiving your new garments, once you have established that they fit well, throw any older garments away to ensure that you are always receiving optimum compression.
Keeping garments in good shape
Regular washing will keep the garment clean and helps the elastic in the material to work at its best. Check the washing instructions for details but usually hand washing in warm water (30° centigrade) is recommended.
The use of fabric conditioner is not recommended as this damages the elastic nature of the material.
It helps to alternate different garments through the week so that the elastic material in each garment can rest and reshape before being used again. On average two garments worn in turn will last for around six months. If only one garment is used all the time it will need to be replaced at least every three months.
How clothing and posture can help lymphoedema
Using clothes to support the swelling
Clothing such as sports tops or leggings that contain lycra may help to give light support to the swollen area.
Using posture and position to help
The way that you rest and move will have an effect on your lymphoedema. Gravity is a force that can be used to reduce the swelling but it can also make things worse.
Good posture can help in a number of ways
- It provides the right position for muscles to work and will help to prevent muscle strain.
- It will allow you to breathe more effectively and this in turn will help lymph drainage.
Be constantly aware of how you stand, walk and sit. You should check your posture in the mirror from time to time. Make sure that your back is straight and that your shoulders are even as you sit, stand and walk. You can make sure that you are keeping your hips level by putting your hands on your hips. Make sure that you are not putting more weight on one leg than the other.
Exercise
Exercises are activities that use muscles to move or hold a position. We use a lot of muscles in just moving around and carrying out day-to-day activities. Some people enjoy taking part in recreational exercise, such as walking, playing a sport or going to the gym. With some advice you can use this sort of exercise to help control the swelling. There are also exercises that can be graded to your abilities and fitness level that will help you to gain strength and movement.
Exercise and lymphoedema
Lymph flow depends on the muscles working like a pump to encourage drainage and prevent fluid from pooling. Although exercise is a very important part of treatment, certain sorts of exercise can make the swelling worse. This can happen if the exercise that you are doing is harder and more demanding than usual. This can put an extra demand on the lymph drainage system.
Exercise to help yourself
How to use daily activities to reduce the swelling
- It is always important to wear your compression garment when you do any form of exercise so that the elastic support helps the muscles work more effectively.
- Ease off any activity when you start to feel tired and uncomfortable.
- Moving and stretching activities are better than those which keep you in one position.
- Foot exercises, as shown by your lymphoedema therapist, are easy to do and very helpful. Try to do this sort of exercise regularly during the day.
- Breathing exercises can be done at any time and will help to improve the deep lymphatic drainage.
- Tasks such as ironing and vacuum cleaning can put a lot of strain on the swollen side. Try to keep up with these jobs by doing a little at a time.
- If driving for long distances ensure that you take regular breaks.
How to use recreational exercise to reduce swelling
Everyone has a different level of fitness and ability. It is important to find the right balance of exercise that suits you. If you are returning to an activity that you have not done for some time, start by doing a short session so that you do not overstrain and tire yourself, then you can build up the activity gradually.
If you are actively involved in recreational activities, the general lymphoedema exercises provided in the next section can be added into your warm-up and cool-down routine.
Guidance on recreational activity
- Compression garments are very important during more rigorous recreational activity and you may need firmer stockings than usual.
- Start a new activity for a short time to make sure it does not cause more swelling and then gradually build up.
- It is possible to improve and increase your activity levels but this has to be done slowly and carefully.
- Some activities such as use of weights can be included but please ask your lymphoedema therapist for advice about this.
- If you want to return to more energetic activities such as running, seek the advice of a lymphoedema therapist as you may need to take special precautions.
- Cycling and cross-country walking may be helpful if you have leg swelling. You will need strong support stockings for these activities.
- Wear suitable protective clothing and have the necessary equipment to protect yourself from possible injury.
- Many people find that swimming and moving in water is very helpful. You do not need to be able to swim as just exercising in the water will help.
- Activities such as Yoga, Pilates, T’ai Chi and Lebed encourage you to stretch and relax and also to breathe correctly.
- Give yourself plenty of time to stretch all your muscles in your warm-up and cool-down session.
- Add breathing exercises into your warm-up and cool-down routines.
- Finish off your exercise with a warm or cool bath or shower. Do not be tempted to use the sauna!
Breathing exercises
The diaphragm is a large sheet of muscle that stretches across the lowest ribs. Gentle deep breathing encourages the diaphragm to work so that you will notice the lower ribs and the abdomen expand as you breathe in. This causes the pressure inside the chest to change and this helps the deep lymph system to work better. This will in turn help the lymph to drain out of the limbs. Breathing exercises can be done at any time and should be done at the beginning and end of your self-massage and exercise routine.
To do this type of breathing, place both hands on your abdomen so that you can feel the bottom of your ribs.
Let your fingers touch at the front. Without arching your back, breathe in slowly and deeply. You will feel your hands move apart as your abdomen expands.
Repeat this four more times.
Leg exercises
The sort of exercise that you can do will depend on your age and level of fitness. It is important to always stay within a range that is comfortable and which does not cause you to strain. The exercises will be more helpful if you do them slowly and concentrate on controlling the movements.
The exercises described in Group 1 use the calf muscles to pump fluid out of the legs. They can be repeated often during the day and each exercise should be repeated ten times in any position that is comfortable. Repeat the exercises every hour if you are not able to walk around.
If you are mobile and able to walk and move around with ease, you can try the more vigorous exercises described in Group 2. These will help to move your joints and also exercise the muscles that help with lymph drainage. The best position to do Group 2 exercises is to lie on the bed or floor.
Group 1
Exercise 1
Slowly move your ankle so that you bend your foot up and stretch the back of your legs. Hold for the count of five and then slowly point the toes to stretch at the ankle and again hold for the count of five.
Exercise 2
Slowly rotate your swollen foot at the ankle, making circular movements with pointed toes. First clockwise and then anti-clockwise.
Even if you have difficulty in moving around it is still important to move as much as you can. This keeps the joints supple and the muscles as strong as possible.
As well as exercising your foot and ankle you can try the following activity when sitting with your leg supported or in bed.
Exercise 3
Bend your knee as far as you can. Then as you stretch your leg out straight, try to clench the muscles at the front of your thigh so that you can feel it tighten.
It sometimes helps to bend your ankle and pull your toes up as you work to straighten your knee.
Exercise 4
Tighten the thigh muscles.
Hold the thigh muscles for the count of ten and then relax for the count of ten before starting again.
Group 2
Exercise 1
Start with your leg straight. Now bend your leg at the knee and then at the hip so that your knee comes nearer to your body.
Hold for the count of five before stretching out your leg. Now hold your knee straight as you slowly lower your leg down to the bed or floor.
Do the exercise five times and build up to ten times. If you have swelling in both legs repeat this exercise on both sides.
Exercise 2
Roll over so that you are lying on the side that is not swollen. Keeping your swollen leg straight, lift your leg from the side so that your foot moves up towards the ceiling.
Hold for the count of five then slowly lower. If both legs are swollen, repeat the exercise on both sides.
Do the exercises five times and build up to ten times. If you have swelling in both legs repeat the exercise on one side and then the other.
If you are actively involved in recreational activities, make sure that you combine stretching exercises in your warm-up and cool-down routine that work the muscles in your back, hips and thighs, lower legs, calves and feet. Similar activities can be done as water exercises before and after a swimming session.
Useful addresses and phone numbers
Leeds Cancer Support
Leeds Cancer Support complements care provided by your clinical team. We offer access to information and a wide range of support, in a welcoming environment for you, your family and friends.
We can be found in the information lounges in Bexley Wing and also in the purpose built Sir Robert Ogden Macmillan Centre.