Getting treatment for your lymphoedema is often a slow process. You will probably have had the chance to read your way through the entire selection of glossy magazines in the doctor’s waiting room before you are given a diagnosis.
Finding a clinic to treat you may not be so easy and then you find out that there are no pills or operations that can make the swelling go away. But – on the bright side – the treatment doesn’t hurt and there really is quite a lot that you can do for yourself. The secret is to make it a part of your daily routine – just like cleaning your teeth or spending time to get your hair right. The treatment that helps the best certainly isn’t rocket technology.
Infections of the skin and tissue (described as cellulitis) are bad news. When you have lymphoedema, the immune system in the swollen part of the body is not working as well and cannot fight the infection. Cellulitis can make you feel unwell very suddenly. There is usually a feeling of heat with more swelling and there may be a rash or more redness. The treatment is antibiotics as soon as possible so you will need to see your GP as an urgent appointment. Once you have started on your antibiotics, you need to rest until things settle down and you start to feel better. If you want to know more about this problem, the Lymphoedema Support Network (LSN) provide factsheets on cellulitis and its treatment “What is cellulitis? Management of cellulitis in lymphoedema".
Keeping the skin clean, dry and in good condition is one of the best ways to prevent infections. Good skin hygiene is even more important as you enter your teenage years. Using an electric razor to remove unwanted hair is less likely to damage your skin than a wet shave or waxing. Even though you may be tempted by the smell of mint chocolate scented soap, it will make your skin drier and is best avoided. Soap substitutes such as aqueous cream help to keep theskin in good condition. Breaks in the skin are potential entry sites for bacteria so wear protective clothing if you like doing things where there is a risk of scratches or grazes. Whenever possible, avoidusing your swollen limb to have blood pressure taken or having injections.
A good supply of moisture cream is a must, even though you may have reservations about how thick and sticky it feels! It is important that you find one that you like and feel happy about using regularly and the good news is that there are a number of different creams that you can try – such as diprobase, doublebase, E45. You may have a special moisture cream that you really like and you can use this as long as it doesn’t cause a skin reaction. There is a spray-on moisturiser called 'Dermamist', that you can use if you really don't like creams. At this point, there is a word of warning. Many of the moisture creams are petroleum–based and will saturate into your clothes and hosiery after being applied to your skin. These will then easily ignite so contact with a naked flame or a cigarette is most definitely best avoided!
If you are planning a trip abroad, it’s a good idea to think ahead and pack some high factor sunscreen to protect your skin. Insect repellents are important too (plug-in vapourisers are the most effective). Even then, the odd persistent mosquito may leave its mark. If you do get a bite, bathe the area with antiseptic solution and a dry dressing and watch the area carefully. It is a good idea to take a course of antibiotics with you, so that if the bite starts to look infected, you can treat it straight away. If going away on a winter holiday, don’t be tempted by piping hot baths or saunas as these make the swelling worse. Hot weather has the same effect and although you won't want to spend all of your holiday relaxing under the shade of the nearest tree, try to cool down as often as you can and apply LOTS of sunscreen – before you get dressed as well as during the day.
Loose linen or cotton clothing is often the most comfortable to wear on hot days. This is the time when you also most need your compression garments! Even if you do not want to wear them with your swimming things, there may be times during the day – or at night, when you can and this will certainly help to keep the swelling under control. Frequent dips in the swimming pool or sea will help you to keep cool but if you have leg swelling, it’s a good idea to wear sandals to protect the skin on your feet from any sharp object or picking up a fungal infection like athlete’s foot. This problem causes the skin to feel itchy and you will notice the skin peeling between your toes. Regular use of an antifungal powder in socks and shoes may help to prevent this problem.
There is a lot of useful information about looking after your skin in the LSN ‘Skin Care Factsheet’. If you would like to receive a copy, please email adminlsn@lymphoedema.freeserve.co.uk.