The Prevention of Lymphoedema:
General Do's and Dont's

Judith R. Casley-Smith

Prevention is better than cure. The following applies to all patients with lymphoedema (lymphedema), but this can often be prevented or avoided for many years after an operation or radiotherapy involving a group of lymph nodes. The patient should be carefully educated at the time of the operation and made to realise that they have a limb or limbs 'at risk', which must be carefully looked after.

Unfortunately, this is often not done, and results in a very angry patient who would have wished to be fully informed of the possible consequences of the operation and/or the radiotherapy. In particular they would have wished to be informed of any preventative measures that could have been taken to avoid lack of full arm movement and, even more importantly, the onset of lymphoedema. Post-operative and post-radiotherapy patients should be carefully educated immediately - including about suitable exercises .

Patients with lymphoedema should memorise all of the following points. Observing them will help to prevent the limb getting worse; ignoring them may allow it to become bad indeed!

Patients who have been treated very successfully, so that they no longer have to wear a compression sleeve, must remember that their limb is still 'at risk' (they still have a reduced lymphatic capacity); these points are still vital if they are to stay 'normal'. The following instructions should be given to all patients.

{Nos. 1-12 will help to prevent lymphoedema starting; they all apply to patients with lymphoedema}:

1. Do not ignore a slight increase in size, or a constant ache in (or adjacent to) an area 'at risk'; stop serious lymphoedema before it starts - and do it QUICKLY!

2. Keep the lymphoedematous limb or a limb 'at risk' spotlessly clean. A 'soapless' cleanser (e.g. Hamilton's Body Wash) is recommended. Do NOT use soap. When drying be gentle but thorough. Ensure any creases and between the digits are dry.

3. Avoid any trauma (knocks, cuts, sunburn or ordinary burns, sports injuries, insect bites). Be careful cutting nails; do not cut the cuticle; at most, ease it back with a cotton-wool covered orange stick. (If you employ a manicurist, ensure that they act similarly!)
If sewing with a lymphoedematous arm, a patient should use a thimble; if gardening, they should wear a glove; if bush-walking etc. boots and protective clothing should be worn. Hamilton's Urederm or Lodema ointment should be used on calloused areas (e.g. heel or sole). Such callouses should never be cut off!

4. Any redness - infection - should be treated AT ONCE. All infections need antibiotics (some patients are on these permanently).
Watch out for tinea! (This is often only a slight redness and a peeling of the skin.) It is well to puff an antifungal powder (e.g. ' Pedoz') into your socks or stockings and shoes, as well as use it over the inflamed area.
Patients who have frequent attacks of infection should have antibiotics on hand (literally, in their purse or pocket!) and take them immediately an attack starts. Hours later is too late!

5. Do NOT carry heavy loads (cases or heavy shopping) with a bad arm or one 'at risk' of developing lymphoedema, nor a heavy shoulder bag or handbag on a bad arm or one at risk.

6. The patient MUST not allow ANYONE to measure their blood pressure, to take blood, or to give an injection (or implant a drip) in a lymphoedematous limb or one 'at risk'. This includes intravenous fluids, etc., during an operation elsewhere on the body. Even for blood pressure measurements, the other arm can be used or a leg (but also see point 21!).

7. The limb should be kept as cool as possible in hot weather (air conditioning if possible); AVOID SUNBURN! (Use 'Hamilton Broad Spectrum SPF15+ Sunburn Cream' or similar .)

8. It is very important to keep the skin supple and moist. A very good range of skincare products is available, including preventative lotions and creams.

9. A normal balanced diet is best (plenty of vitamins). Lymphoedema is high-protein oedema, but eating too little protein only weakens the connective tissue and makes the oedema worse!

10. If travelling by air, a compression sleeve/stocking must be used; additional pressure bandages may be needed on a long flight. A gauntlet or glove must be added if one is not normally used. These should also be used on a limb 'at risk'.

11. The patient must wear loose clothing; do not block the few remaining lymphatics! Pants and bra's are the worst; jeans and other tight clothes, and shoes with straps are also often a problem. Pads may have to be worn under the bra strap. Underpants/panties should be loose both around the waist and thighs. There should be NO redness or indentation on their removal. Tight jewellery also does this and should not be worn if the arm is affected.

12. Benzopyrones can be taken prophylactively, before lymphoedema occurs, to prevent or delay its occurrence.

13. Wear the sleeve/stocking at all times INCLUDING AT NIGHT. It may be necessary to wear a garment with a lower compression at night, to make sleeping possible. Bandages at night may be more comfortable (provided the patient can bandage properly - otherwise they can be dangerous).
If patients are going out for a special occasion, they may be able to leave it off - just for this time. They must measure before they go and when they return. If it has got worse, they must not do this again for a month! However it must not be left off like this until some months have passed after the last course of C.P.T.; the tissues of the body will not have remodelled very much until then - and they can readily be filled with fluid again!

14. If a compression garment does not cover either the fingers and hand, or the lower foot, and they start to swell - the patient must consult the therapist at once.

15. If the leg is affected and the patient has to stand for long periods, it may help to change the height of the heel several times during the day. Otherwise, wear comfortable, adjustable lace-ups with, preferably, cushioned soles (e.g. sandshoes or sneakers).

16. Make sure the underclothes and compression garments are regularly washed. (Wash the compression garment in accordance with the manufacturer's instructions.)

17. Patients should exercise ; but NOT too much (don't make the limb ache with tiredness). They must not overtire a limb at risk; if it starts to ache, lie down with it elevated. They must not sit if a leg is involved as this will prevent drainage through the buttock region. They should wear a sleeve/stocking while they exercise.

18. Exercises should be modified by a qualified therapist to suit the individual patient. Patience is required both by the therapist and the patient to perform the more difficult ones correctly.

19. To remove hair from legs (or one at risk) or under the arm, a properly maintained electric razor (new heads, as needed) is much safer than safety razors, depilatories, or abrasive mitts.

20. Change the garment according to the recommendations of the maker, or if it feels at all loose (looseness means that either the limb is smaller or the garment is old - either way it will not do its job!). The stocking must not leave a compression band at the ankle, knee, groin or waist. It should not chafe at any point. If is does, get help from the therapist.
Wash garments according to the manufacturer's instructions, or they will not last well - and they are expensive!
A limb should be measured at least once a month. If there is any change (up or down), see the therapist. Help may be needed (if it increased) or a new stocking (if it went down).

21. Patients with primary lymphoedema in one leg must remember that the other 'normal' leg may also have an abnormal lymph drainage. It should be protected like a 'limb at risk': NO injections, etc., a compression stocking during a long flight, rapid treatment of inflammation, etc. It is very important that a compression garment is worn during pregnancy!

22. It is well known that patients who are intelligent about their problems can live almost normal lives. Those who forget details and are careless, promote problems which will increase and compound themselves, thereby making their daily lives far more difficult and uncomfortable. But patients can only do their part if they are carefully taught!

This document was last amended on 31 August, 1995.