How will lymphoedema affect my life?

How lymphoedema affects your life may depend on which part of your body is swollen and to what degree.

Lymphoedema should not prevent you from continuing with your usual lifestyle and activities. However, you may need to modify some aspect of your life if these involve a lot of activity, or inactivity, of a swollen limb.

Try to continue with your life as normally as possible but listen to your body. If any activity causes discomfort, approach it gently and with caution or don't do it. For example, if it's difficult for you to pick up children, get down to their level instead. You may find a papoose, which can be adapted to carry a child on your back, front or side, is helpful.

If you have difficulty with activities such as washing up, cooking and getting washed or dressed, ask to see the occupational therapist. S/he can advise you about techniques and equipment to help.

When shopping, ask someone to help with heavy bags or split the shopping into lighter loads. Many supermarkets will take your shopping to the car and load it for you.

Lymphoedema is a chronic condition and not necessarily a disability, but if you think you may be entitled to a disabled driver's badge, you can get a form from the social services department of your local council. This has to be signed by your family doctor. You may also be eligible for mobility allowance, which can be used for modifications to your car.

Clothing and shoes

You don't have to stop looking smart because you have lymphoedema. If you enjoy dressing up and going out, try to continue. Your hosiery can be covered with long sleeves, gloves, trousers or long skirts, if you wish. Dark opaque tights or stockings can be worn over compression hosiery. Some compression hosiery is also available in a range of colours. Your lymphoedema therapist will be able to advise you about clothes and footwear.

If your limb is very swollen, you may have problems getting clothing or footwear to fit you. Try to avoid clothing, or jewellery, which will prevent drainage of fluid because of pressure on lymph vessels. A correctly fitting shoe is important if you have a swollen foot. A flat heeled shoe with a lace-up fastening is recommended to provide support and helps to limit the swelling. During bandaging treatment you may prefer to wear trainers. Some people can't wear shoes of the same size on both feet. If you have difficulty getting 'odd' shoes, you can contact the Disabled Living Foundation.

Relationships and feelings

Other people may ask about your lymphoedema. How you respond will depend on how you feel about the swelling yourself. It's quite usual to sometimes feel angry or fed up about your swelling and you may have negative feelings sometimes. If you find your appearance distressing, you may find it helps to discuss this with your lymphoedema therapist, who may be able to refer you for counselling.

Will changing my diet help?

Being overweight may affect your treatment for lymphoedema and your general health. If you are worried about your weight, discuss this with your lymphoedema therapist or family doctor. There is no special diet for treating lymphoedema. Try to eat healthy, well-balanced, meals and keep your weight within normal limits.

What about going on holiday?

There is no reason why you shouldn't go on holiday. If you are planning to fly long distances, and have been fitted with compression hosiery, you should wear it during the flight. Swelling may increase in a pressurised cabin. This should go down again after the flight.

If you are planning a holiday in a hot climate, any time of year, continue to take extra care of your skin:

  • Use a sun block. Sit in the shade or cover up with a hat, t-shirt or loose trousers. Remember you can get sunburnt through hosiery, even just walking around. Sunburn can result in increased swelling
  • Shower after swimming as both salt and chlorine can cause dryness
  • Use extra moisturiser. If the swollen area is exposed to the sun, the skin may become dryer than usual
  • Don't go barefoot on the beach, in the sea or around the swimming pool if your leg is swollen. This will reduce the risk of getting cuts, scratches and infections in your foot

Heat may worsen your swelling don't be alarmed by this. If possible, continue to wear your hosiery. Try to stay cool and rest when possible. Any increase in swelling should go down on your return home.

Think carefully about where you're going on holiday you may need to use an insect repellent. Remember not to have immunisations given into a swollen area or an area that may be at risk of swelling. Remember when you're on winter holidays, such as skiing, the sun is even more deceptive, so don't forget your sun block.

Always remember to take your antibiotics with you if you are on long-term treatment or your doctor has told you you're at risk of developing cellulitis. If you think you may have an infection in your swollen area, go to a doctor straight away. You can check what medical help may be available to you in advance and make sure that you have sufficient medical insurance cover.

Activity holidays can be fun but don't spoil them by overdoing an activity you're not used to for example, water sports, mountaineering, skiing or hang-gliding. Discuss this type of holiday with your therapist before you make arrangements. Above all, enjoy yourself.