Lymphoedema
Lymphoedema is persistent swelling that appears when the lymphatic system can no longer keep up with draining fluid away from the tissues.
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Lymphoedema is persistent swelling that appears when the lymphatic system can no longer keep up with draining fluid away from the tissues. Lymph is not simply water: it is rich in protein, and as it lingers in the tissues it gradually changes them. That is why lymphoedema does not behave like ordinary swelling — it does not settle overnight, it does not respond to water tablets, and left untreated it creeps forward slowly over years. An arm or a leg is affected most often, but the swelling can also involve the face, neck, chest, abdomen and external genitals. Lymphoedema cannot be removed for good, but it can be held in check, and the earlier that starts the better it holds. The first year after the swelling appears is the most rewarding time to treat it.
How lymphoedema shows itself
It usually begins quietly: a ring feels tight, a watch leaves a mark, a shoe pinches by evening, a shirt sleeve sits differently on one arm than on the other. At this stage the swelling is soft, pressing with a finger leaves a dent, and by morning it has almost gone — which makes it easy to blame on the heat, on salt or on a long day.
Then the picture changes. The swelling stops disappearing overnight, the finger no longer leaves a dent, and the tissue feels firm and springy. A sense of heaviness and tightness sets in, along with a dull ache and stiffness in the shoulder, elbow or ankle. The skin thickens, coarsens and loses its natural creases; it may develop warty outgrowths, deep folds and patches through which clear fluid seeps. There is one simple sign doctors check first: if the skin at the base of the second toe cannot be picked up into a fold, that points to lymphoedema. When the swelling reaches the head and neck, a feeling of heaviness in the face, a change in the voice and difficulty swallowing are added to the list.
What matters is not only how severe the swelling is but which stage it has reached. While it still goes down overnight the tissues have not changed and everything is reversible; once it is permanent and the skin has hardened, the aim is no longer to recover the original size but to hold the present one and stop it growing.
Why lymph stops draining
Primary lymphoedema comes from inborn peculiarities in the structure of the lymphatic vessels, behind which lie changes in the genes. It is uncommon, often runs in families, and does not necessarily show at birth: quite often the swelling appears for the first time in adolescence or in an adult, seemingly out of nowhere.
Secondary lymphoedema is incomparably more common and means the lymphatic system has been damaged. The main causes are these.
- Cancer treatment. Removal of lymph nodes and radiotherapy to the same area are the commonest cause. The risk follows surgery for breast cancer, melanoma, gynaecological tumours, prostate cancer, head and neck cancers, and also lymphomas. The swelling may appear months or many years after treatment.
- Past inflammation. Erysipelas and other deep skin infections leave scarring in the lymphatic vessels. A circle closes easily here: infection causes lymphoedema, and lymphoedema makes the next infection more likely.
- Chronic vein disease. In venous insufficiency and after a deep vein thrombosis so much fluid passes into the tissues that the lymphatic system is eventually exhausted.
- Excess weight. In marked obesity fatty tissue mechanically obstructs lymph drainage and swollen legs become routine. This is one of the few causes that can be acted on directly: losing weight reduces the swelling appreciably.
- Immobility and injury. Lymph moves because muscles work, so prolonged immobility after illness, paralysis or severe arthritis produces swelling on its own. Extensive tissue damage acts the same way.
- Parasitic infection. In the tropics and subtropics lymphatic filariasis is widespread — worms that live in the lymphatic vessels. It is the commonest cause of lymphoedema worldwide, and worth bearing in mind when swelling appears in someone who has lived for a long time in such regions.
When swelling is not lymphoedema
Before treating lymphoedema it is important to be sure the swelling really comes from it: there are many look-alikes and they are treated in entirely different ways.
Swelling of both legs that builds towards evening, with or without breathlessness, points rather to the heart, the kidneys or the liver. Swelling of one leg that came on over hours or a day, with calf pain and warmer skin, is first and foremost a deep vein thrombosis and needs checking urgently. In chronic venous insufficiency the swelling comes with dilated veins, brown staining of the skin and ulcers near the ankle. Lipoedema is a separate condition: fatty tissue is laid down symmetrically on both legs, the feet stay normal, the legs are tender to press and bruise easily. Finally, swelling can be a side effect of medication — some drugs for high blood pressure do this. And separately: if swelling appears in an arm or a leg years after treatment for a tumour and grows quickly, the doctor's first job is to rule out the disease returning.
How the diagnosis is made
In most cases the diagnosis rests on the history and the examination: when the swelling started, what operations and infections there have been, the state of the skin, and that skin-fold test at the base of the toe. The volume of the limb is measured with a tape at several levels and compared with the healthy side, while specialist centres use optical volume measurement or a device that estimates fluid in the tissues from electrical resistance. Those numbers matter not in themselves but as a way to see later whether the treatment is working.
Further tests are arranged when the diagnosis is not obvious. Ultrasound of the veins rules out thrombosis, lymphoscintigraphy shows how the lymph travels and where it stalls, and magnetic resonance and computed tomography reveal an obstruction and assess the nodes. The arteries in the legs are checked separately: if the flow through them is impaired, compression can be dangerous, and this is established before any garment goes on.
What genuinely helps
There is no medicine for lymphoedema, and water tablets do not work here: they remove water but not the protein, and it is the protein that holds fluid in the tissues. The foundation of treatment remains complex decongestive therapy — a combination of four measures, each weaker on its own than all of them together.
- Compression. In the first, intensive phase the limb is wrapped in short-stretch bandages to bring the volume down; then comes a compression garment of the appropriate class — a sleeve, glove, stocking or tights. It goes on in the morning, before the day's swelling has built up, and is replaced every few months, because once it has stretched it stops working. There are also adjustable wraps with fastenings, which are easier to put on unaided.
- Movement. Lymph is driven along by contracting muscles, so exercise is not an add-on but an active part of the treatment. Walking, swimming and a specific set of exercises work best, all done with the compression garment on.
- Skin care. This is not about appearances: intact, well-moisturised skin sharply reduces the risk of infection, and every infection that does occur damages lymph drainage further still.
- Massage. Manual lymphatic drainage is a gentle technique that steers fluid towards lymph nodes that are still working. A trained therapist performs it and teaches a simplified self-massage to be done at home every day.
After the intensive phase comes the maintenance phase, and it lasts for life: garment, exercises, skin care and self-massage daily, with specialist reviews several times a year. An intermittent pneumatic compression pump may be added. If the swelling proves stubborn, specialist centres offer surgery: joining a lymphatic vessel to a vein, transferring lymph nodes, or removing the fatty tissue that has built up. These reduce the size of the limb but do not do away with compression — the garment is still worn afterwards.
Erysipelas and other complications
The commonest complication is erysipelas, an acute inflammation of the skin and the tissue beneath it. Stagnant protein-rich lymph is a good medium for bacteria, and the way in is opened by any small thing: a crack between the toes, a graze, an insect bite, athlete's foot. It starts fast: an area of skin turns red, hot and painful, the temperature rises, there are shivers and the swelling shoots up. It is treated with antibiotics and treatment must begin within hours; if these episodes keep recurring, a doctor may prescribe a long-term preventive antibiotic.
A rare but serious complication of long-standing lymphoedema deserves separate mention: a tumour of the lymphatic and blood vessels. It looks like a purplish-blue patch resembling a bruise that will not fade, or like nodules on the skin of the swollen limb. Any such new lesion should be shown to a doctor without delay.
Finally, something that is talked about less deserves acknowledging: an altered arm or leg, no longer being able to wear familiar clothes, and the daily business of bandaging all weigh heavily. Low mood and withdrawal from other people are a usual part of this illness, and they can be helped exactly as the swelling can.
When urgent help is needed
Call an ambulance (in European countries, on the single number 112) if:
- redness of the skin is spreading visibly, the pain is out of proportion to how the skin looks, blisters or dark or purple areas appear and the person is getting worse by the hour — these are signs of a deep infection in which time is counted in hours;
- fever comes with confusion, rapid breathing, a weak pulse or extreme weakness;
- the leg has swollen suddenly, with calf pain, and breathlessness or chest pain has joined it;
- swelling of the face and neck is increasing and interfering with breathing or swallowing.
Contact a doctor the same day if redness, heat and pain appear in the swollen limb along with a temperature: antibiotics for erysipelas are started immediately, not next week. The same applies to swelling that increases quickly for no clear reason, to weeping areas and cracks through which fluid leaks, and to any new patches or nodules on the skin.
Skin care and everyday habits
Daily care is the part each person does themselves, and it saves far more trouble than it appears to. Wash the skin with a mild soap-free cleanser, dry the spaces between the toes and the skin folds thoroughly, and apply a moisturiser every day. Wash and cover any scratch with antiseptic straight away. Treat athlete's foot at once rather than when it has spread: it is the commonest way in for erysipelas. Cut nails carefully, use an electric razor for shaving, wear gloves for gardening and housework, and in summer use sunscreen and insect repellent. Shoes should be comfortable and closed, and it is better not to walk barefoot indoors.
What to avoid: very hot baths, saunas and steam rooms; tight rings, straps and elastic; and long periods sitting still with the leg hanging down. Where possible, injections, blood samples and blood pressure readings are taken on the unaffected side — though this is not an absolute ban and must not get in the way of care in an emergency. On flights and long journeys the compression garment goes on before setting off. And the two measures with the greatest effect of all: keep your weight steady and keep moving. Regular activity, including moderate resistance work, is not harmful in lymphoedema but beneficial — this has been tested specifically — and the old advice to spare the arm and lift nothing with it does not match current recommendations.
Online consultation
A remote consultation is most useful for working out what you are actually dealing with. The doctor will ask how and when the swelling began, look at photographs, judge whether the picture fits lymphoedema or points instead to venous insufficiency, lipoedema, a drug side effect or swelling of cardiac origin, and say which investigations are worth doing. Once the diagnosis is settled, the practical side is convenient to handle online: how to choose a compression garment and when to replace it, what to do if it rubs or slides down, how to build up exercise, how to lose weight and how to look after the skin so that erysipelas never gets its chance. Separately, the doctor will go through an episode of redness and fever and say whether an antibiotic is needed today. And will name the signs that mean calling an ambulance rather than writing in.
This material is for information only and does not replace medical advice.
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