Lymphoedema. What is it? How do you get it?
How did I get mine? I got it as a side effect of radiotherapy, along with cellulitis. It is called "secondary lymphoedema" when it is a side effect of radiotherapy. It is very painful for me, and although I was originally told it is only temporary, I have since found out once you have it, then it is for ever. It can be managed though which is a good point!
Another wonderful part of the treatment, that I am only finding out about post-treatment. Still it could be a lot worse, so I keep telling myself.
You will also find some more website links on the support page of the Furry Monkey website about Lymphoedema. There are also some useful forums on some of the websites where you will find lots of friendly folk who are suffering the same as you. They are very knowledgeable and it's worth asking them questions if you are worried about anything connected with Lymphoedema.
A lovely couple of friends from Oz (thanks John and Brenda!) sent me the following link "Cure hope rises for lymphoedema" - let's hope human trials start soon!! However if the link doesn't work (it seems like it's a newspaper site so they could disappear!) then the text is copied here for your information. Fingers crossed!
I'm working on more sections, but if you'd like to add anything, then please send it to me!
What is Lymphoedema?
Lymphoedema is a long term swelling of one part of the body, usually a limb, which is caused by failure of part of the body's lymphatic drainage system. If a lymph channel becomes blocked, perhaps by a tumour or because of damage caused by radiotherapy or surgery, the lymph fluid is unable to pass along the lymph vessel. Excess tissue fluid builds up and causes swelling, because it is unable to drain away through the lymph vessels as it normally would. The medical term for swelling is oedema (pronounced edeema) - which gives rise to the name lymphoedema.
This may be because the lymphatic system has failed to develop properly, causing swelling, which can be present at birth, or may not develop until later in life, this is called Primary Lymphoedema and can run in families. People can also be at risk when the lymphatic system has been damaged or blocked by tumour, surgery, radiotherapy, accident or serious infection. This type is called Secondary Lymphoedema.
It is not possible to replace lymph nodes that have been removed or lymphatic vessels which have been damaged. Once lymphoedema has developed it cannot be cured permanently. However, it can usually be reduced and controlled.
Lymphoedema is a condition which may affect anyone, at any time. However, it occurs with greater frequency in females. It is often distressing, can be debilitating, and is often also painful, showing itself as swelling of the limbs and body. The most common form of lymphedema is in a limb, but it can affect any part of the body or internal organs. It is far more common than is accepted by the medical profession.
What does the lymphatic drainage
The lymphatic system is part of your body's circulatory system and a vital part of your immune system. It helps to fight infection but just as importantly it is responsible for cleansing your tissues and maintaining a balance of fluids in your body.
The body's tissues are bathed in a clear fluid that leaks out of the small blood vessels to nourish and cleanse them. The lymphatic drainage system carries away the excess water, protein and waste products from the tissues through a network of fine channels. It filters the lymph fluid through the lymph nodes, before emptying the cleansed fluid back into the blood stream.
If your lymph vessels or nodes become damaged or are removed, then lymph fluid cannot move freely through the system. The fluid then builds up and causes swelling in the affected area.
Is usually determined from birth and is often due to the under-development of the lymphatic system - usually too few lymphatics, but there may also be cases where the lymph vessels be adequate in number, but are very dilated and do not pump properly.
It can develop at any stage of life, but is most likely to occur at adolescence. It is less likely to start later in life Primary lymphoedema usually worsens quite slowly.
Lymphoedema can occur at any time, once the lymphatics are damaged. Sometimes, it can start immediately and lasts for life; the oedema may occur for a while then disappear, and may or may not re-occur; or it may appear years after the event in which the lymphatics are damaged, and can be triggered by a seemingly trivial event, such as sunburn, carrying heavy weights or a long flight.
The three main types are:
Aplasia: the initial lymph vessels, the lymphatic capillaries, may be absent or limited
Hypoplasia: there may be too few lymphatic vessels, or they are too narrow
Hyperplasia: the lymph vessel walls are dilated
Hereditary Lymphoedema can be divided into three groups:
Congenital lymphoedema: the swelling (oedema) has existed since birth
Early onset lymphoedema (lemphoedema praecox): the swelling occurs before the age of 35 years
Late onset lymphoedema (lymphoedema tarda): the swelling
occurs after the age of 35 years
Usually occurs where the lymphatic system becomes impaired following surgery and/or radiotherapy (as in cancer treatment) or as a result of infection, severe injury, burns or trauma. It may worsen quite rapidly.
In the Western world the commonest cause of secondary lymphoedema is the treatment of malignant tumours. In such cases it is important to remove, by surgery, some of the lymph nodes in the affected area. For example, from the armpit (axilla) of patients with breast cancer. This causes damage to the lymphatic system and lymphatic drainage can be impaired.
Lymphedema can occur at any time, once the lymphatics are damaged. Sometimes, it can start immediately and lasts for life; the oedema may occur for a while then disappear, and may or may not re-occur; or it may appear years after the event in which the lymphatics are damaged, and can be triggered by a seemingly trivial event, such as sunburn, carrying heavy weights or a long flight.
The Different Stages of Lymphoedema
The severity of the lymphoedema can increase, particularly without treatment or complliance with treatment. Without treatment, the skin in the affected area may become more susceptible to bacterial skin infections (cellulitis) and to fungal skin infections. These infections can affect the lymphatic system by damaging the small lymphatic vessels and worsening the lymphoedema.
Once any swelling has started to develop, the accumulation of the lymph fluid in the tissues causes cells to be activated that produce new connective tissue. This is called Fibrosis.
The tissue is initially soft and then can become increasingly hard. This is known as sclerosis.
Depending on the severity, lymphoedema can be dubdivided into different stages:
Lymphoedema Stage 0
There is some damage to the lymphatic system, but it has not yet become apparent. The lymphatic system is still coping by means of compensatory mechanisms, so swelling is not yet present.
Lymphoedema Stage 1
A soft swelling (oedema develops in the affected area. The swelling can be indented by applying pressure to the skin. Oedema appears only towards the end of the day and can partially or completely resolve when the limb is raised (elevated).
Lymphoedema Stage 3
The swelling is large and the texture of the skin may change and be associated with complications such as skin lesions with warty outgrowths (papillomatosis) and small vesicles (cysts). Sometimes large skin bulges are present.
How will Lymphoedema affect
Lymphoedema can affect you in many ways. As your doctor or nurse from the hospital team will know your medical history if you think a problem you are having is caused by lymphoedema ask them first.
Once damaged the lymphatic system can never recover fully although not all people at risk develop lymphoedema.
In more severe Lymphoedema the skin may become broken and the colourless lymph fluid can leak out onto the surface. This is because too much fluid is building up in the tissues.
Please remember though, most people with lymphoedema only have mild symptoms.
What does Lymphoedema feel like?
Unfortunately, there is a general lack of medical knowledge and expertise in giving an early diagnosis and correct referral for treatment. Too often, doctors will claim that it is a trivial condition, which a person has to live with. In fact, Lymphoedema may often have an immense impact on a person's quality of life.
Someone with Lymphedema will usually feel any of the following symptoms:
Feeling of tightness and heaviness in the limb, which can result in a difficulty of movement
A gradual thickening of the skin on the affected limb
Lymph may also leak through the skin as the condition worsens
Deep aching pains or shooting pains up the limb
Aching buttocks (leg lymphoedema) or back of the shoulder (arm lymphoedema)
Pins and needles in the limb
A feeling of tightness or tenderness in the elbow or back of the knee
Pains in the joints (e.g. elbow, knee and ankle), similar to arthritis, and may be diagnosed as this
Tenderness in the groin of the affected leg
"Blown-up" abdomen if a leg is affected or in "lymphoedema-all-over"
The limb or affected areas are warmer than other parts - if it becomes red, this suggests an infection which must be treated immediately
An intolerance to heat, especially in the affected limb (climatic, saunas, baths)
Clothes or shoes do not fit properly
Fatigue often sets in
Experts in this country and throughout the world all recommend that lymphoedema is controlled and managed by:
Try to keep your skin in good condition and well moisturised. Try to prevent any trauma to the area. If you have an injury to the swollen area treat it promptly. Clean the area carefully, apply antiseptic cream or lotion and watch for any signs of local infection, such as fever, swelling, redness, pain, heat, rash or blistering of the skin in the affected area. Contact your GP immediately if you notice these signs, as you may have a skin infection called cellulitis which will require immediate treatment with antibiotics. Infection can cause a sudden increase in swelling that can be difficult to reduce.
If you have fungal infections such as athlete's foot, or other skin conditions such as eczema which affect the swollen area, these should be treated appropriately. Ask your Doctor or Lymphoedema Specialist for advice.
Support (this is done using compression garments, either sleeves,
bandages or stockings)
Well fitting specialist elastic hosiery will control the accumulation of fluid and support the muscles helping to pump the lymph along the lymphatic channels. A course of daily multi-layer bandaging may be necessary to reduce and reshape the limb before hosiery can be fitted.
Movement of the limb
Keep the affected part of the body moving even when resting and follow a daily programme of exercise. Over exertion is not helpful. At rest support the affected limb so that it does not hang down.
Manual Lymphatic Drainage (MLD) or Simple Lymphatic Drainage (SLD)
- this is a type of massage
A simple self -massage routine can be learnt which carried out daily will improve the lymph drainage. Manual Lymphatic Drainage is a specialised massage practised by trained therapists. It is particularly effective when combined with bandaging.
Successful management of lymphoedema needs time to be set aside each day for exercise, skin-care etc., but it does pay off if you persevere. Sadly there are no easy solutions, the fluid cannot be drained off and water tablets do not help with this type of swelling.
These therapies need to be done daily to get the best results. You will be shown how to carry them out for yourself at home. There is a great deal that can be done to help lymphoedema, but it is a long-term problem.
Although the swelling can usually be reduced, there is always a risk of it coming back. It may take several weeks or months before you notice any real improvement in the swelling, but an affected limb should become easier to move within a few weeks.
Cleanse and moisturise your skin daily. Closely inspect your skin for any signs or symptoms of infection
Do not have injections, vaccinations or blood taken from the affected limb
Do not have acupuncture or a local anaesthetic in the affected limb
Do not have any non-essential operations on the swollen area
Do not have your blood pressure taken on the affected limb
Skin biopsies should be performed only if there is a suspicion of cancer
Avoid blows, cuts, sunburns, burns, insect bites, cat scratches in the affected area
Always use gloves in the garden or for work that could result in a minor injury
Take care of your nails. Do not cut your cuticles.
Regularly insepct your toes and toe nails for signs of fungal infection (i.e. athlete's foot0 and get this treated straight away
Be careful when sunbathing. Always use a good high factor sunscreen (Factor 25 or more)
Use an electric razor for removal of hair in the affected area
Avoid extremes of temperature, i.e. no sauna, no steam baths
How do they work?
Compression plays an important part in the treatment of lymphoedema. Not only goes the garment increase the pressure within the tissues thus encourages lymph fluid to be redistributed and drained, but more importantly, it reinforces the skin making a firm wall to the limb and so increases the efficiency of the muscular pumping systems within the limb. This encourages lymph fluid to flow.
Check the following when using sleeves and stockings:
The use of a small amount of talcum powder on the skin prior to putting on the sleeve/stocking will assist with fitting the garment, specially if the limb has been washed.
You may experience discomfort during the first 24 hours of wearing compression garments. However, this is almost always transient.
Arm sleeves/mittens/stockings should be removed when retiring to bed unless you have been advised otherwise.
Skin hygiene is important. You should use moisurising creams on the arm or leg. It is best applied when you have taken the garment off in the evening. It should NOT be applied prior to putting the garment on.
If you experience any of the following whilst wearing the garments, please contact your Doctor or Lymphoedema Clinic.
Swelling of the fingers
Numbness in part of the limb
Colour change in hand and fingers or foot
The sleeve/stocking should be removed under these circumstances.
The sleeves/stocking loose their elasticity and support over time and it
is recommended that they are renewed every six months.
Exercise is important. Lymphatic fluid drainage can be improved with physical exercise and exercise may help prevent the onset of lymphoedema. Your physiotherapist or nurse specialist can offer advice on special exercises for you to perform.
Try to walk and exercise regularly as advised
Perform deep-breathing exercises as advised
Diuretics are not recommended for the treatment of lymphoedema. They are unsuitable for long-term medication because of the increased risk of fibrosis in the tissues. However, if you suffer from any other illnesses such as high blood pressure, it may be essential to continue to take them.
Your diet should be healthy and balanced
There are no special diets to be recommended, but it is recommended to keep to a low salt diet unless otherwise instructed
Being overweight must be avoided or reduced as obesity palces an additional burden on the lymphatic system
Avoid having injections, vaccinations or blood taken from the arm on the side where surgery occurred
Do not have your blood pressure taken on the affected side
Avoid lifting heavy weights with the affected arm, or pushing and pulling any heavy items
Do not carry heavy weights or bags with the shoulder strap on the affected side
Do not wear tight jewellery or wristwatches, or restrictive clothing around your affected arm or wrist
Always use gloves for gardening, in the kitchen or for other work that could result in a minor cut
Take care of your nails - do not cut your cuticles
Do not put unnecessary pressure on the affected arm (i.e. handstands)
Always use a thimble for sewing
Use wide bra straps - a shoulder pad under the strap may help
Perform exercises regularly, but do not over-exercise
Always wear well fitting shoes, and try to prevent blisters - wear shoes with support and low heels
Do not walk barefoot due to the risk of injury
Always maintain good foot hygiene - dry your feet, particularly your toes, thoroughly
Regularly insepct your toes and toenails for signs of fungal infection (i.e. athlete's foot) and treat accordingly (please ask your pharmacist for advice)
Avoid tight underwear that cuts into the groin
Do not sit with one leg crossed over the other
Avoid having injections or vaccinations in the affected leg
Wear anti-deep vein thrombosis (DVT) stockings for long-haul air flights - these can be purchased from the chemist
Do not wear tight belts
For patients with leg swelling always wear compression stockings/socks when travelling for long journeys in a car/coach
Do not remain inactive for long periods of time
Take a small first aid kit, including antiseptic cream - tea tree oil is a useful mild antiseptic
Remember to take sunscreen, skin moisturiser and insect repellent
If you travel by air, the change in cabin pressure may cause your affected
arm/leg to swell. It can help to wear a compression sleeve or stocking
whenever you fly. Doing simple mobility exercises during the flight
will also be helpful
© University College London Hospitals
Melbourne scientists have discovered a potential cure for the chronic, fluid-retaining condition lymphoedema by replicating the way the body grows new lymphatic vessels. By mimicking the way genes produce the proteins VEGF-C and VEGF-D, which make lymphatic vessels grow, researchers at the Ludwig Institute for Cancer Research in Parkville have been able to generate new lymphatic vessels in animals.
The new vessels transported the fluid that causes swelling in lymphoedema away from the tissue, reversing the condition. Researchers Marc Achen and Steven Stacker said the next step would be to try this method on humans, in the hope that it might replace damaged lymphatic systems.
The lymphatic system transports fluid around the body, cleanses body tissue and filters dangerous bacteria, for example, the swelling that occurs when someone twists an ankle is resolved by the lymphatic system. When it has cleansed the tissue, the fluid returns to the bloodstream, but in people with lymphoedema that does not occur, causing chronic, and often uncomfortable, swelling in the limbs.
While one in 6000 Australians is born with the condition, it can be caused as a result of surgery. It is commonly found in women who have had breast cancer surgery, as the lymph nodes are often removed to prevent the cancer spreading. The manager of the lymphoedema clinic at the Mercy Hospital for Women, Penelope Sanderson, said the research was "absolutely wonderful" news for lymphoedema sufferers, because the condition was now incurable, and not well understood.
People with lymphoedema suffered socially as well as physically from the condition, she said, as they felt embarrassed by their swollen limbs. Lymphoedema sufferers were prone to the skin infection cellulitis, for which they had to be monitored. Treatments now include compression garments to move the fluid away from the swollen area and special exercises. Dr Achen said the research team would look at how well the growth of the new lymphatic vessels could be controlled, and at starting human trials.