Prevention: General Do's & Don'ts
Prevention is better than cure. Whereas the following points apply to all patients with lymphoedema, this can often be prevented or avoided for many years after an operation or radiotherapy (e.g. after a mastectomy or lympectomy, after pelvic operations for cancer and in general after any form of surgery or radiotherapy to 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 the proper exercises.
Patients with lymphoedema should memorize all of the following points. Observing them will help to prevent the limb getting worse; ignoring them is foolish! 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 system); these points are still vital if they are to stay 'normal'.
The following instructions should be give to all patients:
Do not ignore a slight increase in size; stop serious lymphoedema before it starts - and do it QUICKLY!
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.
Keep the lymphoedematous limb or a limb 'at risk' spotlessly clean. A mineral bath oil is recommended. When drying it be gentle, but thorough. Make suere it is dry in any creases and between the digits.
Avoid any trauma (knocks, bruises, cuts, sumburn or ordinary burns, sports injuries, insect bites, cat scratches). Be careful cutting nails; do not cut the cuticle, ease it back with a cotton-wool covered orange stick. If sewing with a lymphoedematous arm, a patient should use a thimble; if gardening, they should wear a glove; bush-walking, etc.- boots and protective clothing should be worn.
The limb should be kept as cool as possible in hot weather (air conditioning if possible); AVOID SUNBURN! - use a broad spectrum SPF15+ sunburn cream.
If traveling by air, a compression sleeve/stocking must be used; additional pressure bandages may be needed on a long flight. These should also be used on a limb 'at risk'.
Any redness - infection - should be treated AT ONCE, by your Dr. 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. Tinaderm) into your socks or stockings and shoes, as well as use it over the inflamed area. Patients who have frequent attacks of S.A.I. (secondary acute inflammation) should have antibiotics on hand (literally, in their purse or pocket!) and take them immediately an attack starts. Hours later is too late!
Do NOT pick up heavy loads with the bad arm, e.g. a case or heavy shopping bag. Do NOT carry a heavy shoulder bag or handbag on the bad arm.
Patients should exercise; but NOT too much (don't make the limb ache with tiredness). They must not overtire a limb a '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 you exercise -AND AT NIGHT!
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 which preferably cushion walking (e.g. sandshoes or sneakers).
The patient MUST not allow ANYONE to measure their blood pressure, to take blood, or to give an injection (or implant a drop) 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 see the next point!)
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, rapidly treat inflammation, etc. It is very important that a compression garment is worn during pregnancy!
The patient must wear loose clothing, do not block the few lymphatics remaining! 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 thights. There should be NO redness or indentation on their removal, otherwise they will stop some of the lymphatic drainage whch is left! Tight jewelty also does this and should not be worn.
If patients wish to remove hair from lymphoedematous legs (or one at risk) or from under the arm, an electic razor which is kept properly maintained (new heads, as needed) is better than either safety razors, depilatories, or abrasive mitts. The last three at not recommended.
Avoid extreme very hot or cold temperature changes (over 90 degrees or below zero), such as hottubs, saunas, or sunbathing.(Heat increases blood flow through the tissues. Sudden temperature changes cause undo stress on the weakened system.)
Maintain good hygiene by keeping the skin clena and dry with hypoallergenic soap and deodorant.
Avoid vigorous, repetitive movements against resistance with the affected arm (scrubbing, pushing, pulling).
WARNING: If you notice a rash, blistering, redness, increase of temperature or fever, see your physician immediately. An inflammation or infection in the affected limb could be the beginning or a worsening of lymphedema.
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