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Myths and Facts About Lymphoedema

  • Jeanine Mewburn
  • 46 minutes ago
  • 5 min read

There are many myths surrounding lymphoedema, so I thought it would be helpful to shed some light on a few important facts.


Lymphoedema is a chronic condition that can be either primary or secondary.

Primary lymphoedema means that the lymphatic system did not develop normally. It may be present at birth (congenital) or develop later in life for no obvious reason. For example, you may be born with a less-developed lymphatic system and have no symptoms for many years. Then, during periods of hormonal change such as puberty, pregnancy or menopause, the lymphatic system may no longer cope with the body's demands, and lymphoedema may develop.


Secondary lymphoedema occurs when the lymphatic system is damaged, most commonly following cancer treatment involving surgery or radiotherapy. However, it can also occur after trauma, infection or other conditions affecting the lymphatic system.


Myth 1 – "It's okay because the swelling goes down at night."

Fact: Lymphoedema is a chronic condition, which means it does not simply go away.

Gravity plays an important role in swelling during the day. When you lie down at night, fluid redistributes more easily, so the swelling often reduces by morning. However, the underlying problem remains. Over time, the skin and tissues become stretched, allowing more swelling to accumulate.

Advice: Awareness and early intervention are essential. The sooner lymphoedema is diagnosed and managed, the less impact it is likely to have on your quality of life and the lower the long-term cost of treatment.


Myth 2 – "I have lymphoedema, so I will die sooner."

Fact: Lymphoedema is a chronic condition, but it does not shorten your life expectancy.

However, poorly managed lymphoedema can increase the risk of cellulitis and other complications that may worsen swelling and affect your quality of life.

Advice: Early intervention and good management help minimise these risks.


Myth 3 – "Vigorous exercise causes lymphoedema."

Fact: This advice is now considered outdated and has been disproven by research.

Exercise is generally beneficial because muscle contractions act as a pump, helping lymph fluid and blood circulate more effectively. Inactivity and a sedentary lifestyle are much greater risk factors for swelling.

Advice: Begin an exercise programme gradually and increase the intensity progressively while monitoring how your body responds. Heavy lifting should be introduced gradually and, if appropriate, under professional guidance. Most people are able to return to a normal, active lifestyle.


Myth 4 – "Flying in an aeroplane causes lymphoedema."

Fact: Most people do not develop lymphoedema simply because they fly, even if they have a limb at risk.

Advice: People who have lymphoedema or are at increased risk may benefit from wearing a properly fitted compression garment during flights, particularly long-haul flights. Staying well hydrated and moving regularly during the flight are also recommended.


Myth 5 – "I should never have my blood pressure taken or a blood test on my arm at risk."

Fact: There is no strong scientific evidence that these procedures directly cause lymphoedema. Much of the concern is based on clinical experience rather than definitive research.

Advice: Whenever possible, avoid unnecessary procedures on an at-risk limb. However, if there is no suitable alternative, essential medical care should never be delayed.


Myth 6 – "It isn't necessary to wear a compression garment."

Fact: There is overwhelming evidence that compression therapy is one of the cornerstones of lymphoedema management.

Compression garments help control swelling, reduce tissue fibrosis and stiffness, improve comfort, decrease the risk of cellulitis, and support mobility and daily activities.

Advice: Wear your compression garment as recommended by your lymphoedema therapist and have it reviewed regularly to ensure it continues to fit correctly.


Myth 7 – "Having a sentinel lymph node biopsy prevents lymphoedema."

Fact: Although the risk is considerably lower than after an axillary lymph node dissection, it is not zero.

The lifetime risk following a sentinel lymph node biopsy is approximately 5%, compared with 20–30% following an axillary lymph node dissection.

Advice: Prevention is always better than cure. Early recognition and treatment can prevent significant complications and expense in the future.


Myth 8 – "I have lymphoedema now, and there is nothing I can do about it."

Fact: Although lymphoedema cannot currently be cured, it can usually be managed very successfully.

Treatment options include manual lymphatic drainage, compression garments, exercise, skin care, weight management and, for selected patients, surgery.

Advice: Prevention and early intervention remain the most effective approaches.


Myth 9 – "Lymphoedema only affects women and cancer survivors."

Fact: Anyone can develop lymphoedema.

Men, women and children can all develop lymphoedema. It may occur following cancer treatment, cellulitis, surgery, trauma or infection. Primary lymphoedema may be present at birth or develop later in life.

Advice: Persistent swelling should always be assessed by a qualified lymphoedema practitioner, regardless of age or gender.


Myth 10 – "Diuretic tablets treat lymphoedema."

Fact: Lymphoedema is described as a high-protein, low-flow oedema. While diuretics remove water from the body, they do not remove the protein-rich fluid that accumulates in lymphoedema. “Patients with lymphoedema may notice their swelling to be softer but with little volume change. Any initial benefit is usually lost with continued use.” (Mortimer & Levick, 2014)

For this reason, diuretics are generally not recommended for treating lymphoedema unless another medical condition requires them.

Advice: Effective management includes manual lymphatic drainage, compression therapy, regular exercise, maintaining a healthy weight, skin care and adequate hydration.


Myth 11 – "Drinking water makes lymphoedema worse."

Fact: Drinking enough water is important for healthy blood and lymph circulation. Dehydration can actually make fluid balance more difficult for the body to regulate.

Advice: Staying well hydrated is an important part of managing lymphoedema and maintaining overall health.


Final Thoughts

There is a great deal of misinformation about lymphoedema, particularly on the internet. If you are unsure about something you have read or heard, speak with your lymphoedema therapist rather than relying on myths or anecdotes.


Remember: Lymphoedema is a lifelong condition, but it doesn't have to control your life. To understand it is the first step towards managing it effectivly.

Early diagnosis, the right treatment, regular exercise, good skin care and appropriate compression and ongoing self-care can make a remarkable difference.

If you notice persistent swelling or have concerns, don't wait—seek advice from a qualified lymphoedema therapist. The earlier you act, the better the long-term outcome.


If you have any questions or would like to book an assessment, please call me on 0419 022 985. During your appointment, we can discuss the treatment options best suited to your needs, including lymphatic drainage massage. As a one-stop lymphoedema clinic, I can also measure, fit and supply your compression garment, making your care as convenient and seamless as possible.


Moving lymph with confidence
Moving lymph with confidence

 

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