How to self-manage your lymphoedema if you are unable to attend clinic appointments

There are some things you can do, and a few things you should avoid, which will help to reduce the risk of your lymphoedema worsening, especially during this time whilst you may not easily be able to see your Lymphoedema Nurse or Practitioner.

Things you should do:

• Look after your skin, which may feel tight and stretched if you already have lymphoedema
• Hygiene – daily washing the affected limb, avoiding soaps which dry the skin, and careful drying, especially between digits.
• Moisturising - it is important to ensure that your skin is well hydrated to prevent it from becoming dry and cracking. Daily application of a non-perfumed moisturiser - by applying this with gentle upward strokes, will encourage fluid to drain upwards, towards the top of the limb.
• Protection - preventing damage to fragile, delicate skin is important in order to reduce the risk of cellulitis. But if your skin becomes broken, applying a mild antiseptic and covering the area will help to prevent cellulitis. If your skin becomes red, hot and painful, this will need prompt treatment, usually with antibiotics.
• If you think you may have cellulitis, you should see your GP immediately, or contact 111 if a GP appointment is not available.

• Continue to be active. If you have lymphoedema, immobility or reduced mobility can make the lymphoedema worse – if muscles are not pumping effectively, lymphatic drainage is slower and fluid remains in the tissues for longer, causing heaviness and tightness of the swollen limb. Even a relatively small amount of exercise can help to keep the swelling under control by making the muscles work harder (1).
• If you have had cancer treatment, you may be feeling very tired. Because exercise may be difficult, you should be as active only as much as you feel able to. But if any activity tires you too much, causes your affected limb to ache and become painful, or worsens the lymphoedema, you should ease up on this particular activity. As you feel stronger, you should be able to gradually increase the amount of exercise you can comfortably do. In general, it is usually best to start small and to gradually build up.
• Continue with Simple (Self) Lymphatic Drainage (SLD) (massage). If you have been shown how to carry out SLD you should continue as advised.
• Continue to wear your Lymphoedema garment. If you normally wear a lymphoedema garment, either a sleeve, stocking, or lymphoedema Wrap, this will have been carefully measured for you, and you should continue to wear it. If possible, it is good to wear your garment when exercising, as the firmness of the garment forms a “wall” against which muscles are able to work more effectively, enhancing lymphatic drainage, and helping to reduce the swelling.

Things you should avoid:

1. Any static activity, where your arm or leg is in one position for long periods, ie, standing or sitting, as the lack of muscle pump will worsen the swelling.
2. Heat, which can aggravate lymphoedema. Avoid hot baths; only use hot tubs, saunas, steam rooms, etc for no more than 10 minutes at a time; use a high factor sun block in hot weather.
3. Insect bites, which can worsen swelling. Use an insect repellent, preferably one containing “Deet”, if visiting places where you are likely to be bitten.
4. Stress, which can worsen lymphoedema. Allow yourself plenty of “down time”, with regular breaks in stressful situations. Make the most of opportunities to practice mindfulness and other helpful de-stressors.

Lymphoedema of the arm - you should particularly avoid:

1. Having blood taken from, injections given into, or blood pressure taken on, your “at risk” arm.
2. Heavy lifting and carrying, and moving, including pulling and pushing, heavy objects with your affected arm

Stop wearing your garment if:

• You have cellulitis - your skin will probably feel too tender and will be too fragile to comfortably wear a garment. In this case you should wait until your limb feels able to cope with wearing your garment again, and possibly wear an older “slacker” garment for a while.
• You develop any new pain, discomfort, numbness or pins and needles in your lymphoedema limb(s).
• The size of your arm or leg has changed and your garment no longer fits. You will need to be measured for a new garment. This can be done remotely by your therapist who can contact the Haddenham office, where the clinical team will be on hand to support this.

If your lymphoedema limb becomes more swollen for no apparent reason, you should seek medical advice quickly.

About the author

Jeanne started her lymphoedema career in the early 1990s, setting up the lymphoedema clinic in Durham. She then moved into a specialist clinical role across South Durham, Teesside and North Yorkshire, and in 2013 set up the Lymphoedema Service based in Imperial Healthcare Trust at Charing Cross Hospital. Jeanne is now the Lymphoedema Nurse at St Teresa’s Hospice in Darlington, where her passion for education continues.