Lymphedema: 6 Things You Need to Know

1. What is lymphedema?

Lymphedema is primarily swelling that appears on the limbs. The cause is an accumulation of lymph (fluid) in the spaces between the cells.

At first the swelling is mild. To the touch it feels like bread dough. If you press it with your finger, it keeps the indentation for a while — a small pit remains and does not smooth out for minutes. It decreases or almost disappears by morning, because when you lie down the fluid "flows" to an area where your lymphatic system is intact and is reabsorbed.

If you leave it untreated, your condition will worsen. The swelling increases, you develop a tense pain. Your skin may crack and straw-colored lymph fluid can leak from it. Proteins deposit between the cells, the edematous area hardens so you can no longer press it in with your finger. The skin begins to flake, wart-like growths may appear, and it becomes reddish-purple in color.

2. How does lymphedema develop?

Even a healthy person produces lymph!

Your circulation consists of three parts.

1. Your arteries carry fresh blood into your body, right to your cells.
2. Your veins collect most of that blood and carry it back to your heart.
3. What the veins cannot "pick up" is left to the lymphatic system.

As long as you are healthy, the blood brought by the arteries is carried back into circulation by your veins and lymphatic vessels together, so swelling does not develop.

Lymphedema occurs when your lymphatic system becomes diseased or damaged and cannot perform its "transport" task. What it cannot remove accumulates relentlessly in the tissues.

If your lymph vessels function poorly and your veins are also diseased (dilated, tortuous, with slowed flow), even more burden falls on the lymphatic system. Mixed venous and lymphatic lymphedema presents with more severe symptoms.

3. What causes lymphedema?

In poor regions of Africa and India, infections are still the main cause of the disease. People drink contaminated water and the pathogens enter the body and destroy the lymphatic vessels.

In wealthy countries, including ours, infection-related cases are rare. Two main forms are known here.

Congenital

• It mostly develops in women, and rarely appears in childhood; symptoms usually start in adolescence or during the first pregnancy.

Acquired

• This form is much, much more common — at least 65-70% of domestic cases fall into this category.
• It most often develops after surgery, accidents, or injuries.
• It appears on the arm after many breast cancer operations.
• It is also common after varicose vein surgery, liposuction, hernia operations, gynecological, urological, and major abdominal surgeries, sometimes years later.
• It can occur after accidents involving multiple fractures.
• It is more frequent in obese people because fatty tissue contains many vessels and produces more lymph. The lymphatic system, designed for a smaller body, cannot collect the extra lymph produced by an enlarged body.

4. Can lymphedema be cured?

Lymphedema is not currently curable, BUT IT IS TREATABLE.

The goal of treatment is to reduce the swelling back to a normal size so you can live a normal life, and at the same time prevent further deterioration.

If you have lymphedema, you must learn the treatment with the help of your doctor and nurse. You need to learn what to do and you must work on it yourself every day. If you don't, you're only harming yourself!

Hospitals, clinics, therapists, nurses and doctors are never available exactly when you need them. You have to make appointments and wait. BUT YOU are always "on hand" for yourself!

5. How is lymphedema treated?

I already wrote that lymph is produced again and again with every heartbeat. That means as soon as you stop a treatment, it begins to accumulate again.

Therefore it requires regular treatment. Symptoms of "true" lymphedema should be treated daily, at most every other day!

Important to know: diuretics have no effect on lymphedema and will weaken you. Do not take diuretics for lymphedema — they will not help!

Home treatment consists of several parts.

Direct edema-reducing methods

Bandaging (wrapping):
Advantage: helps if you move little.
Disadvantage: it can easily slip down during movement, cut into skin folds, and must be rewrapped. Thin people can put it on more easily; with a bit of excess weight it is hard to wrap.

Elastic (compression) stockings:
Advantage: they assist the muscle pump during movement.
Disadvantage: they are not easy to put on and take off, especially with overweight.

Self-lymphatic drainage massage.
Advantage: with a little learning and practice it can be effective, since you can help yourself anytime.
Disadvantage: most people cannot reach their own leg if they are overweight.

Therapist-performed manual lymphatic drainage.
Advantage: excellent if you have it performed frequently enough.
Disadvantage: availability and cost.
You won't get an appointment when you need it, but when the therapist is available.
A session costs around HUF 10,000. If you only visit the therapist twice a week, it has no effect. If you go often enough, it will cost you a fortune. With appropriate frequency you may face annual costs in the millions of forints.

Machine-assisted lymphatic drainage (compression therapy unit).
Disadvantage: not as precise as a trained lymphatic therapist.
Advantage: you can buy a medically certified compression therapy unit (with a leg treatment kit) for about HUF 140,000 (Power Q-1000 Plus).
A professional unit (Power Q-1000 Premium) is available around HUF 240,000.
You buy it once and it lasts 8–10 years. You take it out when you need it.

Indirect edema-reducing methods

They contribute to reducing the formation of edema and keeping it down.

• Rest with the limb elevated, for 10–15 minutes during the day.
• Regular exercise (Nordic walking, cycling are the most effective).
• Watch your weight! Obesity and lymphedema go hand in hand!
• Eat a varied diet! Reduce consumption of animal fats and proteins.
• Some (medicinal) drugs increase edema formation. Stop those.
• Heat increases edema formation. Avoid sunbathing and hot baths.
• Pay attention to skin care. Edematous skin is fragile. Protect your feet from all injuries, insect bites, and wounds. Be especially careful when caring for nails.

6. What should you do to improve?

Due to a lack of proper information, most Hungarian lymphedema patients believe that the treatment prescribed to them — namely an annual 5 (sometimes 10) day hospital treatment — is sufficient. Is that true?

NO, IT ISN'T!

As I have already said, your lymphatic condition will accompany you from the moment it develops until the end of your life. The edema is reproduced with every heartbeat, so you cannot skip a day, let alone 360 days. However, public health insurance today only provides treatment for a few days; it leaves you on your own for the other 360 days.

You must recognize that you can only count on yourself; how much you suffer from the symptoms depends solely on you.

If you treat it, you will suffer little; if you ignore it, it will make your life miserable. And of course your family's life too, because if left untreated sooner or later you'll need one of them to help you.

My recommendation: work on your lymphedema treatment daily; make it part of your everyday routine. It will repay the daily 20–30 minutes you invest!