Symptoms and diagnosis of lymphoedema

Diagnosing lymphoedema early will help manage symptoms and control swelling. The symptoms of early lymphoedema include:

  • swelling of the affected area
  • change in sensation (the limb or area feeling heavy, tight, full or stiff)
  • skin changes
  • aching.

Symptoms vary depending on whether lymphoedema is mild, moderate or severe. In early lymphoedema, the swelling may not be very noticeable, but pressure might leave a mark on the skin. In later stages, the skin often hardens and there may be more complex skin problems. Severe lymphoedema may affect your ability to do everyday things.

Treatment can improve lymphoedema. The earlier it’s started, the more likely it is to be successful. If you notice any swelling or tightness, tell your doctor or specialist nurse. They can examine the area and do tests for lymphoedema.

If you’re diagnosed with lymphoedema, you’ll be referred to a lymphoedema specialist. They’ll examine the affected area and assess whether your lymphoedema is mild, moderate or severe.

In some areas of the UK, there are specialist lymphoedema centres where you can get advice and treatment.

Signs and symptoms of lymphoedema

Getting advice and starting treatment as soon as you notice any signs and symptoms can help to reduce the risk of the lymphoedema getting worse.

The signs and symptoms of early lymphoedema include the following:

  • Swelling – your clothing, shoes or jewellery (rings or watches) may feel tighter than usual. This may be the first thing you notice before you see any swelling.
  • Change in sensation – the limb or area may feel heavy, tight, full or stiff.
  • Skin changes – the skin in the area may feel tight or stretched and sometimes the texture can feel thicker. Skin may also be dry, flaky, rough or scaly.
  • Aching in the affected area.

It is important to get advice from your doctor or specialist nurse as soon as you notice any swelling, tightness or aching.

You may notice that clothes become tight, or rings and watches start to leave indentations. It will usually be a slow, gradual swelling.

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Other symptoms of lymphoedema

The symptoms vary depending on whether the lymphoedema is mild, moderate or severe. At first, the swelling may not be very noticeable. There may be swelling in the tissue, and soft and gentle pressure might leave a mark or indentation on the skin (pitting oedema).

In later stages, the skin tissue often hardens and there may be more complex skin problems. Sometimes, the skin stretches and breaks, and lymph fluid leaks out on to the surface.

This is called lymphorroea and is due to fluid building up in the tissues or damage to the skin. More severe lymphoedema may limit some of your movements and ability to do everyday things, or it may change the normal shape of your limb.


Diagnosing lymphoedema

Your doctor, specialist nurse or physiotherapist will ask about any other signs or symptoms you’ve had, and examine the swollen limb or area. They will know which cancer and any treatments you’ve had in the past, and will assess whether your symptoms are due to lymphoedema.

Not all swelling is lymphoedema and sometimes tests are needed to rule out other possible causes, such as a blood clot. Some people may need to have scans to find out if the lymphoedema is caused by a cancer affecting the lymph nodes.

If you have any signs or symptoms of lymphoedema, contact your hospital doctor, specialist nurse, physiotherapist or GP for advice. Treatment can improve lymphoedema and the earlier it’s started, the more successful it’s likely to be.

Lymphoedema specialist

If your doctor diagnoses you with lymphoedema, you’ll be referred for a specialist assessment. Health professionals with specialist knowledge in treating lymphoedema may include:

  • specialist lymphoedema nurses
  • breast care nurses
  • doctors
  • physiotherapists
  • occupational therapists.

Here, the term lymphoedema specialist refers to any one of these health professionals.

Assessment

This is carried out by a lymphoedema specialist who will assess whether the lymphoedema is mild, moderate or severe.

Your specialist will ask you about your medical history, check your skin and look for any changes. They will also assess the size and shape of the limb and how the tissue under the skin feels. They may measure your limb with a tape measure, or other specialist equipment, and compare it to the unaffected limb. They will also check your movement and ability to do everyday things.

Sometimes, other tests may be used when it’s difficult to diagnose lymphoedema.

Your lymphoedema specialist should always carry out a full assessment so they can decide the best way to treat the lymphoedema.

Specialist lymphoedema centres

In some areas of the UK, there are specialist lymphoedema centres which offer treatment and advice. Your doctor or nurse should be able to tell you if there’s one in your area. The British Lymphology Society produces a directory of centres. If you don’t live close to a centre, there are other organisations that can offer advice and support.

Back to Lymphoedema

What is lymphoedema?

Lymphoedema is a chronic condition that causes swelling when the lymphatic system is not able to drain fluid properly.

Skin care for lymphoedema

If you have lymphoedema, good skin care is essential. Looking after your skin is an important way of preventing infection.