Living with lymphoedema



I’ve spent the last few days on the beautiful Gower coast on an exciting project with Pocket Medic making film-based prescriptions to help patients manage their chronic disease. The time of the boring leaflet, left crumpled in the bottom of a handbag could well be over.

We were working with some extraordinary people from all over Wales who shared their personal stories and experiences so that others can discover the best ways of managing and living with lymphoedema.

Did you just say lympho…what?

If you did, you’re not alone, but it’s a problem that affects at least a quarter of a million people in the UK alone.

What is lymphoedema?

Lymph is the fluid that carries the white blood cells that fight infection around the body and is responsible for whisking any dead or abnormal cells, excess protein and bacteria, off to the blood stream to be chucked out or recycled.

If the lymphatic system stops working and the lymph stops moving for any reason, it can’t drain away and you’ll see swelling. That swelling is lymphoedema.

Why me?

The lymphatic system circulates around the body but unlike the blood there’s no heart to take care of all the hard, pumping work. Instead, it relies on us to keep it moving with our motion and breathing. If we stop moving, the lymph will too. Being overweight and not being active enough is a risk factor-but also some of us are just unlucky to be born with lymph systems that simply don’t work properly.

The lymph system lies under the skin and skin infections like cellulitis, especially if they are recurrent or severe can lead to lymphoedema, even eczema and varicose veins can be culprits.

Many people develop lymphoedema after cancer treatment where the lymph nodes, that work as the body’s drains are removed or damaged by radiotherapy. Without them the fluid can build up leading to swelling. This may be in the arm after breast cancer treatment or in the legs following bladder or prostate cancer.

Lymphoedema can be uncomfortable and unsightly but the patients that were interviewed really showed me that there’s lots that can be done to help manage the swelling and symptoms, ease any discomfort and allow each person with lymphoedema to live life to the full.

What can I do?

Take care of your skin

Skin care is one of the cornerstones of care. Moisturising regularly, keeping the skin clean and protecting from any bites and scratches can prevent the skin breaking and letting infection in. Avoid needles, tattoos, blood tests, razors and waxing in parts of the body that have lymphoedema and be very careful when gardening, thorns and soil can be a tricky combination.

 Infection busting

Any little infection can escalate and cause a severe skin infection called cellulitis, which can cause the skin to thicken and make lymphoedema worse. So clean any cuts or grazes and use antiseptic to bust any bugs. If there are any signs of redness, pus or increased swelling, see your doc for antibiotics.

 Move that lymph around your body

Exercise is a great way to encourage lymph to move, especially if it has got stuck somewhere in your body and you’ve got swelling. If the idea fills you with dread then start gently, there’s no need for lycra and sweat bands. Walking longer distances in the home, short walks outside and climbing steps can be a good start. Ask your lymphoedema specialist about classes in your area.

 Manage your weight

Being overweight can make lymphoedema worse and make it more difficult to get about when you have it. It’s difficult, when you’re unwell or recovering from cancer diet is often, understandably, not a priority. However getting to a healthy weight and moving around more, will help get that lymph moving again.

 Wear it well

Compression garments are really important in the management of lymphoedema. They put pressure on the tissues to stop the fluid building up and encourage fluid to drain. They can seem uncomfortable at first but if they’re properly fitted and worn regularly they can make a real difference.

Sleep easy

Sometimes it can be difficult to muster the energy and motivation to go to the bedroom but sleeping in an armchair can really make lymphoedema worse. Make sure you sleep in a bed so that the lymph can flow more easily.

 Healing hands

A gentle massage process called simple lymphatic drainage can help the fluid drain away and the good news is, you can do it on yourself. Ask your specialist nurse for guidance.

The way ahead?

A super-micro-surgical technique called LVA, or Lymphatic Venous Anastamosis has been developed to connect a damaged lymphatic vessel to a small vein. This bypasses the faulty bit of the lymphatic system and drains the fluid into the blood stream. It’s not suitable for many people and the BMI needs to below 30 but it is an exciting prospect for the future.

Super support

You are not alone. There are specialist nurses, loads of information sources and support groups for people with lymphoedema to learn and laugh together.

Find out more