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Questions most frequently asked about 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. It can be apparent at birth, or only appear later in life.
Secondary lymphoedema can occur after cancer treatment when lymph nodes are removed from the body by surgery or damaged due to radiotherapy for example. 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 to build up in some parts of the body. For example, a complex fractured ankle may result in lymphoedema of the leg if it puts too much strain on the lymphatic system.
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 can 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.
The lymphatic system is like the blood system and has just as many vessels – but they contain lymph, which is clear and so cannot be seen (unless a suitable dye is injected). The lymphatics differ from the blood system in that the blood continually circulates through each part of the body while the lymph just drains from each part of the body back to the heart.
Lymphatics drain away the excess protein, infection fighting cells and water which continually escape from the blood in small amounts. It also drains some substances made in the tissues, and any foreign substances which enter them. Lymphatics start, in almost every tissue, as many tiny vessels which gradually join into bigger ones.
Lymph is pumped into and along these vessels by the movements of adjacent muscles and by the contractions of the walls of the larger lymphatics. This pumping is aided by many valves inside the vessels.
Finally, the lymphatic system empties into the main blood stream (largely in the lower neck where it drains back to the heart). On its way along the lymphatics, the lymph is filtered in the lymph nodes (lymph glands). These remove foreign matter (e.g. bacteria) and start any necessary immune reactions.
The lymphatics help to remove the excess fluid and protein which enters the tissues from damaged blood vessels, in any inflammation (e.g. after a burn, or other injury). If they cannot remove it all, the part swells (oedema/edema). However, this swelling is usually only temporary, because the tissues heal, and the blood vessels no longer leak excessively.
In an acute injury, e.g. a sprained ankle, the lymphatics are essentially normal. Although there is initial swelling, this is gradually removed over days to weeks. The overload is only temporary although, depending on the severity of the injury, some fibrosis will occur. This may remain for months or even permanently.
However, if the lymphatic system is damaged or blocked, protein continues to enter the tissues from the blood capillaries in the normal way, and a build-up occurs in the tissues the lymphatics should be draining. The accumulation of protein in the tissues causes excess fluid to enter them and the tissues to swell. The swelling decreases the oxygenation of the tissues, interferes with their normal functioning, and makes them heal slower than normal.
To some extent, protein is also removed by some of the cells in the tissues (e.g. the macrophages). These assist the lymphatic system and can partly take over its role if it is blocked. However, in lymphoedema, the chronic excess protein causes these cells to also cease functioning.
The excess protein also acts as a stimulus for chronic inflammation. One of the results of this is the formation of much excess fibrous tissue. The chronic inflammation causes blood capillaries to be dilated. This makes the limb feel hot. This heat combined with the stagnant protein provides a perfect site for bacterial growth.
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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.
If you are at risk of developing lymphoedema, you should maintain good skin care and regular exercise and see a lymphoedema practitioner for monitoring.
Those with identified lymphoedema should also maintain good skin care, exercise, and undertake an individual treatment program called CLT (complex lymphoedema therapy) by a lymphoedema practitioner. Compression garments, MLD (manual lymphatic drainage), special limb exercises, elevation, and compression bandaging, are also recommended. Find a Service
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.
You can find an accredited therapist on the Australasian Lymphology Association website.
https://www.lymphoedema.org.au/accreditation-nlpr/find-a-practitioner/
If you hold a Medicare card you may be able to access support for allied health services (5 subsidised treatments) through a GP under a chronic disease management plan.
If you have lymphoedema and hold a Medicare card, you are eligible to use Australia’s free health care system. However, it’s important to note that not all of Australia’s hospitals provide lymphoedema services.
Due to the ebb and flow of State Government funding, the availability of lymphoedema services within the hospital system is under constant change. So, in the first instance it would be best to contact your local or regional hospital to enquire via their Physiotherapy or Occupational Therapy departments as to whether they provide lymphoedema services.
When using the public health system there will be a waiting list with times varying from region to region and you may require a referral from your GP or medical specialist to access the system.
If your closest Hospital and Health Services (HHS) is unable to provide lymphoedema services, you may be eligible for Subsidised Travel Support to transport you to your nearest private or public service provider.
Research has identified early detection and treatment of lymphoedema may minimise lymphoedema and provide the best results. Therefore, it is important to look after the affected body part promptly.
Self-management techniques:
What do you need to avoid?
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.
You may be eligible for one of the state subsidised government schemes. https://www.lymphoedema.org.au/about-lymphoedema/compression-garment-schemes/
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.
In a lingerie bag in cold water, no fabric softener, and dry out of the sun. Refer to the manufacturer details for specifics.
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.
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.
Research suggests that flying doesn’t increase the risk of developing lymphoedema. However, long distance flights can contribute to general oedema/swelling, often related to sitting for long periods. Check with your doctor or therapist before flying if you’ve had any early signs of lymphoedema. These signs can include a feeling of heaviness or tightness in a limb.
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, as well as the pressure gradient when in water.
Nordic pole walking, rowing and cycling have all been popular with our members in the past. You just have to listen to your body and do whatever exercise makes you feel good.
Want to try something new? Try chair yoga. You will get a great workout.
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 and for providing a barrier to infections.
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 choose petroleum-free products. Choose an unscented lotion with a slightly acidic pH level. When in doubt, choose something soap-free and pH neutral.
Cellulitis occurs when bacteria enters through the skin and causes acute inflammation of the skin and underlying tissues; the bacteria are commonly a Streptococcus or Staphylococcus bacteria strain. 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.
Fungal infections are also very frequent and are often difficult to clear up. Fungal infections can often lead to secondary bacterial infections.
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. Sometimes a fever, body-aches or flu-like sensation (without a sore throat or runny nose) can occur prior to/or at the same time as the redness appearing.
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.
If travelling away from your usual medical care, it is helpful to travel with antibiotics so that they can be initiated early if symptoms of cellulitis start.
The Australasian Lymphology Association’s Management of Cellulitis in Lymphoedema is a useful resource for you and your GP.
Lymphoedema often occurs in the arm or leg(s), but any part of the body can be affected; the genitals, face, neck, trunk, breast etc. Organs can also be affected by impaired lymphatic function; the gut, lungs and liver.
When lymphoedema first occurs, it will pit (leave a dent) if pressed with a thumb. It gradually becomes larger and harder until it no longer pits. If lymphoedema lasts for some years, the swelling can get worse, and the skin can change. There is loss of hair and alterations to the nails. In severe cases, the skin may get very thick, with huge folds and warts – known as elephantiasis.
Some patients with long-term lymphoedema can develop an angiosarcoma (Stewart-Treves Syndrome). This is extremely rare, however it can be life threatening, and is important to be identified early. It is important to discuss any skin changes with your lymphoedema practitioner for this reason.
It is best to maintain a healthy weight. Whatever eating plan you choose must be good for you.
If the lymphoedema is severe, especially if more than one limb is involved, people can become excessively heavy. This may be confused with obesity, but dieting is useless if it is just lymphoedema; however, if there is obesity, dieting is recommended. Even if only one limb is affected, the added weight can place more burden on the lymphatics, and it can also make the limb more liable to injury and consequent bacterial infection.
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, Mediterranean Diet, 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. It is always best to consult your doctor and/or a dietitian to ensure the eating plan is best suited to you.
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 and reduce the load on the lymphatic system. “Water pills” or diuretics usually won’t help reduce lymphoedema. In-fact, in some cases they can worsen swelling by interfering with the natural flow of fluid.
Specialised lymphoedema therapists can help you establish suitable treatments and thus manage the condition.
A diagnosis of lymphoedema can cause both physical and emotional disruption in your life. In the early stages it is not unusual to be asking “Why did this happen to me?” and these thoughts can bring on a range of emotions such as anger, anxiety and resentment.
Learning how to adjust to your new body image and the challenge of finding fashionable or suitable clothing and footwear to accommodate swollen limbs can impact on your self-esteem and confidence levels. You might even find yourself trying to avoid intimacy, feeling that somehow lymphoedema makes you less attractive to others or worse still, isolating yourself from others to avoid socialising due to your perception of how you look coupled with mobility issues.
However, it is vital to both your physical and mental health to stop any self-sabotaging inner chat and not to let your mind turn to negative thoughts. Remaining positive is essential to feeling in control and managing your condition.
Although the chronic nature of lymphoedema may leave you feeling depressed or overwhelmed, if you’re proactive, self-manage your condition and seek out the right treatment regime for your personal situation, you can lead an active and fulfilling life.
It is only natural to focus on a part of your body that has changed, but by giving yourself the time and space to adapt to any physical changes in your body you can create a path forward.
We all have our own way of coping with change. Some of us find it helpful to talk to family and friends, but if you find that you are still struggling seek professional help from your GP. They can refer you to a psychologist for advice and strategies on managing your mood. Medicare subsidies may be available through a Mental Health Care Plan.
Support through membership with Lymphoedema Association Australia can be beneficial to helping you to move forward. By sharing experiences, treatment options, ideas and outcomes with others also living with Lymphoedema you will never feel isolated or alone on your health journey. Sometimes, there is nothing like a cuppa and a chat with like-minded people.
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.
Some states have rebate/subsidy schemes available. They vary from state to state, and can depend on your medical conditions as well as household income or concession card status.
Alcohol and caffeine can also function like diuretics. They both could dilate the lymph tissue and cause more swelling, and as a result, exacerbate the lymphoedema. Keep them to a minimum and listen to your body,
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. Lipoedema can also occur in around 3 percent of cases in the arms.
The fat is symmetric, often 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 often only occurs from areas unaffected by lipoedema. 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 in the later stages can see larger, rounder fat deposits called lobules develop, making legs irregularly shaped and interfering with posture and walking. Lipoedema often appears in puberty and increases during pregnancy or menopause.
Swelling of the legs can be worse when standing, during times of increased heat and at the second part of the day. Lipoedema can obstruct the lymphatics, causing a secondary lymphoedema, known as Lipolymphoedema. For this reason, treatments for Lymphoedema can often be helpful for Lipoedema too.