Living with lymphoedema

Have you ever been on a flight, arrived at your destination and been horrified to discover that your ankles and/or legs are really swollen?

lymphatic drainage

Whatever your experience, it was only temporary and not harmful, however uncomfortable it was.

Sitting for a long period without movement can easily cause swelling. You probably already know that the simplest solution is to get up and walk about during the flight and/or pump your ankles to help move the blood in your legs and prevent it pooling in your veins.

So can you imagine what it must be like to have a swollen leg all the time and know there is no permanent medical cure? You might even have swelling in other parts of the body: including the arms, breast, trunk, face, scalp, neck, or genitals.

People who suffer in this way have a condition called lymphoedema, but it isn’t blood pooling in their bodies, it’s lymphatic fluid.

So what’s the cause? Put very simply, our lymph system is an extensive drainage network that helps keep body fluid levels in balance and defends the body against infections. When working at its best, it’s a highly efficient method of waste disposal, getting rid of all the ‘rubbish’.

It’s a one-way system that carries cells, debris and fluid out of the body. Lymphoedema occurs when the lymph vessels are unable to adequately drain lymph fluid. If the excess fluid isn’t drained completely then swelling occurs in the surrounding tissues.

Swelling, of course, can also be a natural healing reaction to an injury: there has been an increased movement of fluid and white blood cells into the area of inflammation. It’s a sign that our defence system has swung into action.

Lymphoedema can be either primary or secondary

Primary means that it occurs on its own. The understanding is that it is found in people born with faulty genes which cause problems with the way that the lymphatic system works: part of the network of nodes may not develop properly or work as it is expected to. Not all children in a family may inherit this condition, but it does seem to run in families.

The most common form is lymphoedema praecox which appears during puberty, occurring mostly in girls and usually affecting one or both legs.

This is not to be confused with the condition of lipoedema: where someone whose upper and lower body are completely different sizes, making it impossible to lose weight from that area but the excess weight does not include the feet. The problem here is adipose fat, not accumulation of lymph.

Lymphoedema tarda begins later in life and usually affects both lower extremities in men and women.

Secondary lymphoedema is, as the name suggests, a consequence of damage to the lymph system. Any condition or procedure that damages the lymph nodes or lymph vessels may cause it. The causes can include surgery, trauma, chemotherapy, radiation, or infection – even from a mosquito bite.

A little bit of history

Thomas Bartholin was the first to describe the lymph system as a whole. He described it as a natural cleansing and watering system. He published his findings of the lymph vessels in the human body in his scientific paper ‘Vasa lymphatica in homine nuper inventa’ (1654), confirming the existence of the human lymphatic system.

In the 1930s, a Dr Emil Vodder and his wife developed a method of manually moving lymph through the body and it is this methodology that is referred to as Manual Lymph Drainage (MLD). In 1936, Vodder presented MLD to the world in a congress in Paris.

In the mid 1980s, lymphoedema was still a relatively unrecognised condition. Treatment and research have only really been developed over the last 30 years.

How can lymphoedema be treated?

As there is no medically recognised cure for lymphoedema, treatment focuses on reducing the swelling and controlling the pain and discomfort.

According to the NHS Choices website, “the recommended treatment is decongestive lymphatic therapy (DLT).”

There are actually four components to DLT and the expected result is to bring the lymphoedema under control. The four parts comprise compression bandages, skin care, exercises and specialised massage techniques, such as MLD.

Alternatives to the medical route suggest dramatic changes in lifestyle and diet, including using green tea, Butcher’s Broom, ginger and Sweet Clover or only eating raw foods may be successful. One website has many testimonials from people wrapping their swollen areas in cabbage leaves to drain the excess fluid. Acupuncture is mentioned too.

Reflexology Lymph Drainage developed by Sally Kay – in direct response to post-breast cancer lymphoedema sufferers – also provides evidence of long-term reduction of swelling.

Living with lymphoedema

Fifty years ago, primary lymphoedema was relatively unknown – or unrecognised – as an actual congenital condition and it’s probably fair to say that secondary lymphoedema is still more easily diagnosed and has a higher profile.

It appears that often the first problem is getting an actual diagnosis. Reading through forums and comments from patients, the consensus is that the lack of knowledge in the medical world is so frustrating. And finally, after long waits and lots of invasive tests, can you imagine what it must be like to be told you have a life-long condition which can only be managed with intensive daily attention?

Skincare, for example, is key: using daily moisturisers and avoiding any possibility of infection – cuts, burns, insect bites – is de rigeur, or you run the risk of wounds that won’t heal and even developing further complications like cellulitis.

What must it be like to have a job where your employer doesn’t understand your daily struggle to complete even the simplest of tasks? To become progressively tireder during the day as your swellings feel heavier and more painful? To have to wear heavy compression garments even when the weather is hot? To endure the stares of strangers? Having to search for clothing or shoes that will fit comfortably over swellings? To lose your confidence or always feel anxious when out in public?

But most of all, can you imagine what it must feel like to be diagnosed with primary lymphoedema and worry that your children will develop it too?

Show your support

Lymphoedema Awareness Week is 5-11 March 2017

International Lymphoedema Day is 6 March 2017

Wear odd socks/tights/gloves this week and tweet your pictures to #lymphsupport

To make a donation to support the work of the Lymphoedema Support Network text LSNS17 £5 or £10 to 70070
or visit https://www.justgiving.com/lymphoedemasupport

Living with lymphoedema can be tough… it’s time to show our support.

Jacqueline Seddon

About Jacqueline Seddon

I was born in Oxford, lived in 36 houses (not all in the UK) and I suppose you could say I’ve learned a lot in the university of life. Now I’m settled in Nottingham – until the next move? - where I work as a therapist and TBP trainer. See my website for more details about TBP.