Living with lymphoedema
March is Lymphoedema Awareness Month. There are two types of lymphoedema, primary and secondary, and it affects persons of all ages. Lymphoedema occurs when the lymphatic circulation fails to function correctly, causing persistent swelling of the limbs or other parts of the body.
There is no cure for lymphoedema. However, early diagnosis can reduce the impact of the disorder. Certain cancer survivors are at increased risk of getting this disease.
"I lived with the heaviness in my legs for 22 years before I was finally diagnosed - sadly, 22 years late. My skin changes had become irreversible due to fibrosis, my lower legs were the same as someone's thighs before undergoing complete decongestive therapy with a trained lymphoedema physiotherapist, who used her hands and daily bandaging to get the swelling down. Then I started wearing special compression pantyhose.
"This year, I was able to wear shorter dresses and tights for the first time in a while, and although I know my legs are not perfect, I was determined to still wear them. Knowing the condition has a name is helping me to accept it, rather than hide behind it.
"I was close to ending up in a wheelchair, but now I can walk further without feeling like I was pulling a load on my legs. Although we have a love-hate relationship, my compression stockings have been a lifesaver and have helped me become mobile again."
Marva was diagnosed with Elephantiasis (locally referred to as Elephantitis) or Stage Three Primary Lymphoedema. She was born with defects in her lymphatic system and was misdiagnosed for many years before recognising there was help available.
How lymphoedema affects your life may depend on which part of your body is swollen and to what degree. It may not be as severe as Marva's to prevent you from continuing with your usual lifestyle and activities; however, you may need to modify some aspect of your life if it involves a lot of activity, or inactivity, for that matter.
ACTIVITIES OF DAILY LIVING
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. If you have difficulty with activities such as cooking and getting a bath or getting dressed, ask your lymphoedema therapist for help. He/she can advise you about techniques and equipment to help, or refer you to other specialists trained to help with functional activities.
When shopping, ask someone to help with heavy bags, or split the shopping into lighter loads. Many supermarkets will help you shop and take your shopping goods to a car and load it for you.
CLOTHING AND SHOES
You may have problems getting clothing or footwear to fit you. Try to avoid clothing or jewelry 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 help to limit the swelling, but during bandaging treatment, you may prefer to wear slippers with velcro straps. Some people can't wear shoes of the same size on both feet. Adjustable straps or velcro helps this.
You don't have to stop looking smart because you have lymphoedema. If you enjoy dressing up and going out, try to continue. Your stockings can be covered with long skirts, or worn as tights if you wish. Pants can be worn over compression stockings. Some compression stockings are also available in a range of colours. Your lymphoedema therapist will be able to advise you about clothes and footwear.
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.
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 gradually lose weight to normal limits.
WHAT ABOUT TRAVELLING?
There is no reason why you shouldn't travel. If you are planning to fly long distances and have been fitted with compression garments, you should wear it during the flight. Swelling may increase in a pressurised cabin. This should go down again after the flight.
- When the time gets hotter take extra care of your skin.
- Use a sun block. Sit in the shade or cover up with a towel, t-shirt or loose trousers. Remember, you can get sunburnt through garments 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. Use appropriate ph-balanced lotions.
- Don't go barefoot on the beach, in the sea or walking on irregular surfaces. 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. Continue to wear your compression garments. Try to stay cool and rest when possible.
- You may need to use an insect repellent. Remember not to have immunisations, injections or have your blood pressure taken on a swollen area or an area that may be at risk of swelling.
If you think you may have an infection in a swollen area, go to a doctor straight away. You may have a condition known as cellulitis that needs prescription medication.
- Whatever the cause or stage of your lymphoedema, there is hope for your swelling.
- Dr. Bernadette Bryan Frankson is a doctor of physical therapy and a certified lymphoedema therapist who manages both primary and secondary lymphoedema of the trunk, limbs and the head and neck areas.