Questions & Answers

What is lymphoedema?

The lymphatic system is a drainage system and part of the immune system. The system is made up of lymphatic vessels, nodes, specific organs, and lymph fluid. The lymph fluid is protein-rich and contains immune cells that protect the body against infection and disease.

Lymphoedema is a specific swelling (oedema) that occurs when the lymphatic system does not adequately drain the lymph from the tissues under the skin.

This can occur if parts of the lymphatic system develop incorrectly before birth, are damaged, or overwhelmed by the effect of other medical conditions.

Primary lymphoedema is a rare inherited condition in which lymph nodes and lymph vessels are absent or abnormal.

Secondary lymphoedema can occur after cancer treatment when lymph nodes are removed from the body by surgery or damaged due to radiotherapy. Trauma to a limb may also cause lymphoedema due to damaging the lymphatic pathways.  This can stop the lymph fluid from flowing freely through the lymphatic system and can cause fluid o build up in some parts of the body. For example, a fractured ankle may result in lymphoedema of the leg.

Lymphoedema is a chronic condition and can be progressive. Over time the skin and tissues of the swollen limb can become hard and are more difficult to manage. Infections also cause scarring of the skin, tissues, and vessels, which can cause lymphoedema to become a more significant problem. With good management and care, much can be done to stop the progression of this condition.

What is the treatment for lymphoedema?

There is no cure for lymphoedema, but it can be managed with the appropriate care and management. The aim of any management is to reduce and control any swelling, improve the range of movement of the affected area, and prevent infections.

General advice is you are at risk of developing lymphoedema or have lymphoedema; you should maintain good skin care, exercise, and undertake an individual treatment program called CPT (complex physical therapy) by a lymphoedema practitioner. Compression garments, MLD (manual lymphatic drainage), special limb exercises, elevation, and compression bandaging, are also recommended.

Use our Directory to find a LAQ Health Professional close to you!

Where do I go for treatment for lymphoedema?

It is always preferable to contact a trained Lymphoedema Therapist for diagnosis and treatment.

Your therapist can also provide advice on the condition, help with compression garment fittings and ongoing management.

Use our Directory to find a LAQ Health Professional close to you!

There are many Queensland Public hospitals where treatment is available, use our Public Health Services information for hospitals that provide lymphoedema services.

What are compression garments? Why do you need to wear them?

Compression is the most effective way of managing and addressing swelling. Compression bandaging and or garments are an essential part of managing lymphoedema. Compression assists with the increase in tissue pressure that allows fluid movement into the collecting lymphatics and reduces excess filtration out of the blood vessels. Compression also limits the body’s tissue from expanding further with fluid in the tissue spaces.

How do I get help to pay for my compression garments?

You may be eligible for the subsidised Queensland State Government Garment Scheme. You can check the following websites:

Queensland Health – Provision of Compression Garments

Queensland Health – Provision of Lymphoedema Compression Garments / Patient Information Sheet

Will my Health Fund pay for compression garments?

Different funds provide different rebates depending on your cover. Check with your fund if you are eligible. There are different types of garments, such as custom-made garments tailored to your body shape and off the shelf garments.

You need to ask the right questions. Ask your therapist for advice and assistance when claiming. Some funds require a letter from your health practitioner.

How do I wash my compression garments?

In a lingerie bag in cold water, no fabric softener, and dry out of the sun.

What is the easiest way to put on compression stockings (legs) if I do not have a donning aid?

Fold the garment inside out on itself, leaving the foot/heel piece tucked in. For toeless garments, place a plastic bag or toe piece over the toe to slide the compression garment on. Use rubber gloves or grippy gardening gloves to ease the garments up the leg and then to smooth evenly along the limb.

Do I need to wear a compression garment if I am travelling?

It is always a good idea to wear your garment on any travel you undertake. Long journeys may increase the swelling because you are not able to move and stimulate lymph drainage. Try and arrange a seat where you have move space and are able to elevate your limb.

There are many ways you can help yourself.

  • Get up and go for a short walk if you are on a train or plane.
  • Take frequent stops if you are travelling in a motor vehicle.
  • Simple exercises such as moving your shoulders, squeezing, and stretching your fingers, or bending and stretching your foot.
  • Drink Plenty of water.

Can I fly with lymphoedema?

Research suggests that flying doesn’t increase the risk of developing lymphoedema. Check with your doctor or nurse before flying if you’ve had any early signs of lymphoedema. These signs can include a feeling of heaviness or tightness in a limb.

What exercises are best for people with lymphoedema?

Swimming, yoga, any exercise really that you are comfortable with. Hydrotherapy has special benefits for those with lymphoedema and venous disorders. Pool exercises are greatly beneficial for lymphoedema due to the non-weight bearing environment of water.

Nordic pole walking is also beneficial.

Want to try something new? Try chair yoga. You will get a great workout.

Do whatever exercise that makes you feel good.

How do I care for my skin?

The skin is the largest organ of the body. It is important for people living with lymphoedema to take good care of their skin. Having healthy, supple skin is essential for the movement of lymph fluid.

When it comes to skin care, it is important to read labels and pay attention to the acid and alkaline levels of soaps and lotions.

Choose products that are within a low pH. Avoid products that are scented and chose petroleum-free products. Choose an unscented lotion with a slightly acidic pH level.

What is Cellulitis?

Cellulitis occurs when bacteria have entered through the skin and cause acute inflammation of the skin and underlying tissues; the bacteria are commonly a Streptococcus or Staphylococcus bacteria strain. The lower leg is most affected. Lymphoedema has been shown to be one of the biggest risk factors for developing cellulitis.

Damage to the skin can occur because of animal scratches, bites, cuts, dry skin, nail-biting, cut cuticles or abrasions to the skin.

Symptoms vary from person to person and can develop over days or a short period of time. The symptoms include pain, redness, warmth, swelling, blisters, rash or lines of redness or streaking.

Cellulitis can be a life-threatening condition, and immediate medical attention is needed.

Depending on the severity of the symptoms, intravenous (IV) or oral antibiotics may be prescribed.

What is the best diet for lymphoedema?

It is best to maintain a healthy weight. Whatever eating plan you choose must be good for you.

Many people with lymphoedema and lipoedema have had great success in losing weight, reducing pain, and have gained an increased sense of wellbeing. There are several plans around:

One is the RAD (Rare Adipose Disorder) Diet developed by Dr Karen Herbst, who is based in Arizona. See her book Lymphoedema and Lipoedema Nutrition Guide.

Others include Low Carb, High Fat, and the Anti-inflammatory Diet.

The important thing with these eating plans is that they encourage you to eat food that is as natural as possible and easy to digest.

Does lymphoedema ever go away?

Lymphoedema can’t be cured, but you can control the swelling and keep it from getting worse. Getting to and staying at a healthy weight may make it better, but “water pills” usually won’t. Specialised lymphoedema therapists can also help you manage the condition.

My lymphoedema is getting me down. What can I do?

Reach out to LAQ and attend a Support group meeting. Nothing like a cuppa and a chat with like-minded people. Check our Events for a meeting near you.

Make an appointment to see a lymphoedema therapist to help you get back on track.

How do I keep cool in summer?

Cool drinks and try to stay out of the sun to try and keep cool. Also, wear cool flowing clothes made in natural fibres. A spray bottle with cool water to spritz your face, compression garments and hands and feet. You would be surprised how a little spray of water can help you cool down and make you feel better.

Where do I go to get assistance for heating and cooling?

The Queensland Government Heating and Cooling Scheme provides reductions in energy costs for medical conditions:

Medical Cooling and Heating Electricity Concession Scheme

Check to see if you are eligible.

Does caffeine affect lymphoedema?

Alcohol and caffeine could also function like diuretics. They both could dilate the lymph tissue and cause more swelling, and as a result, exacerbate the lymphedema.

What is the difference between lymphoedema and lipoedema?

Lipoedema is a painful fat syndrome and is characterised by excess fat developing from the waist down and extending to the ankles. Feet are not affected. Around 80 percent involve the arms and legs. Lipoedema can also occur in around 3 percent of cases in the arms.

The fat is symmetric, tender, painful, and bruises easily. Characteristics that distinguish lipoedema from lymphoedema are:

Pain: Lipoedema sufferers often complain about pain when touched, particularly on the legs.

Bruising: This occurs more easily after knocks and impacts, which can result in severe bruising and subcutaneous bleeding.

In the early stages of lipoedema, the upper part of the body may remain slim, while fat accumulates from the top of the hips to the ankles.

Weight gain occurs and accumulates on both legs, causing a symmetric shape. Leg fat from lipoedema appears more symmetric than swelling from lymphoedema.

Weight loss only comes from areas unaffected by lipoedema.

Swelling of the legs gets worse when standing, during times of increased heat and at the second part of the day.

Lipoedema skin is smooth at first, but over time fatty lumps called nodules can develop in the affected tissues. The skin may appear lumpy.

Lipoedema later stages can see larger, rounder fat deposits called lobules develop, making legs irregularly shaped and interfering with posture and walking.

Lipoedema appears in puberty and increases during pregnancy or menopause.