Produced with kind permission of the LSN and the Lymphedema Association of Australia.

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. At the end of the 20th century, it is far more common than is accepted by the medical profession.

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.

Primary Lymphoedema 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 (known as lymphoedema praecox). It is less likely to start later in life (lymphoedema tarda). Primary lymphoedema usually worsens quite slowly.

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.

Secondary Lymphoedema 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.

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.

What does Lymphedema 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.

A person with the condition may have to adapt to an altered or more limited daily lifestyle, sometimes with a reduced working capability. Daily self-management of lymphoedema also requires a certain self-discipline.

Very often, the onset of swelling and the growing realisation that there is no cure can be hugely destabilising. Many sufferers often feel isolated, partly due to the lack of medical recognition of their condition, and partly due to having few links with others also suffering from Lymphedema. It is often here that membership of a support group can relieve some of these feelings of isolation.

Why does Lymphoedema occur?

Lymphedema occurs when the lymphatic system is impaired. The lymphatic system is necessary to life function and made up of complex structures of vessels and nodes. It is similar to the blood system and has just as many vessels, but they contain lymph that is clear, and so cannot be seen. Oxygen, nutrients and water feed all body tissue but as blood does not circulate to every part of the body, a blood filtrate called the interstitial fluid provides the necessary nourishment to each cell.

Bodily wastes are extracted from the tissues and, along with excess fluid, all drains back into the circulatory system. The lymphatic system is the "overflow" collecting some 10% of the waste that is filtered through the lymph nodes (lymph glands) to remove any foreign matter and to start any necessary immune reactions before finally draining in to the circulatory system. The lymph drainage process occurs by changes in the pressure of the interstitial fluid through the action of breathing and general muscle movement.

Any permanent failure or damage to the lymphatic system causes a damming up of substances and fluid in the tissues - this is Lymphedema.