Lymphedema

Lymphedema is a swelling of the body. The swelling is because the fluid in the body called the lymph is difficult to transport and instead accumulates in one place. The treatment is to reduce the swelling and to prevent the size of the lymph nodes.

What is lymphedema?

The lymphatic system is part of the body’s immune system. The system consists partly of lymph nodes, the spleen, the bumps, and the lymph vessels. Lymphatic vessels are scattered throughout the body and carry the fluid called the lymph.

Lymphedema means that a body part becomes swollen. It is most common to get lymphedema in the arms or legs but you can also get lymphedema on the face, neck, chest, and abdomen.

Most lymphedema is chronic. This means that it is not possible to get rid of the disease, but there are treatments that can reduce the problems.

Secondary and primary lymphedema

There is primary and secondary lymphedema.

Primary lymphedema

Primary lymphedema is congenital and may be present in children and adults. Then the lymphatic system does not work properly or you have too few lymph vessels. Primary lymphedema is very uncommon.

Primary lymphedema may occur in newborns, but also later in life. For example, it can be detected in the teens when the body is growing a lot. It can also be discovered later, usually in the 30s to 40s.

Secondary lymphedema

Secondary lymphedema is more common than primary lymphedema. Secondary lymphedema is because lymph nodes or lymph vessels have been removed or damaged. This can happen, for example, in connection with an operation or radiation treatment. Lymph vessels can also be damaged in, for example, a bone fracture.

Lymphedema can occur in different parts of the body

Where you get lymphedema depends on which lymphatic vessels and lymph nodes have been damaged or removed. For example, you may get lymphedema in your arm or chest if you have removed lymph nodes in the armpit. You may also get lymphedema in the legs or genital area if you have received radiotherapy or surgical lymph nodes.

Symptoms of lymphedema

The first symptom of lymphedema is that the skin becomes thicker. You can often feel a tension in the skin as the lymphedema is forming.

Then it is common to see swelling, for example at the ankles or around the elbow. You can feel it tense and feel heavy in the body part. You can also get marks on the skin for clothing or jewelry that is too tight.

The mobility and strength of the body part can decrease if the lymphedema becomes larger. It can also hurt and you can have skin problems. The risk also increases for you to get an infection in the swollen body part. 

When and where should I seek care?

Contact a health care center if a body part becomes swollen. You can contact many receptions by logging in.

If it’s in a hurry

Contact a health care center or an on-call reception immediately if the swelling comes quickly or if you get very sore. If closed, seek care at an emergency room.

Investigations

First, the doctor does a body examination if you are seeking care because you have a swollen body part. The doctor also senses the body part and measures it.

More often, more examinations are done at another health clinic or in a hospital.

Lymfskintigrafi

Sometimes lymph scintigraphy is done. Then the flow is measured in the lymphatic pathways. The examination can show if there is any damage to the lymphatic system itself.

Prior to the examination, a weak radioactive substance is injected under the skin. The substance is taken up by the lymphatic vessels and transported further into the lymphatic system. With a so-called gamma camera, the doctor can see how the radioactive substance is transported in the lymph vessels and how fast it goes.

You lie down while the gamma camera is taking pictures. The survey can take from two to several hours.

Treatment for Lymphedema

Lymphedema is usually easier to treat if you seek early treatment. Therefore, it is good if a doctor examines you if you have had swelling, even if they do not cause any problems. The swelling usually gets bigger if you do not receive treatment. It can also form fat and connective tissue in the swollen body part if you have untreated lymphedema.  

Compression treatment

One way to treat lymphedema is pressure. There are special bandages or clothes that can be used to press against the lymphatic edema. They can reduce the swelling. Such aids are usually called compression parts.

Compression pants for, for example, the feet have higher pressures than support socks. The increased pressure on the tissue reduces the swelling.

There are compression parts for both arms and legs with extra parts for hands and feet. The parts are available in several sizes but can also be customized. Also, lymphedema on the trunk, head, and genitals can be treated with compression.

Compression pants are a tool that is free in some county councils and regions but which you can pay for in others.

It is important that you get compression parts that are adapted to you and your problems. Compressive parts with too low pressure can cause the swelling to increase and too high pressure can affect the blood flow.

It is common to wear compression pants during the daytime. Then the lymphatic system is more loaded. Some need them around the clock. It may feel awkward at first, but it usually causes swelling to decrease rapidly.

Take care of the compression parts

When you use the compression parts, they expand and the pressure decreases. The compression parts should, therefore, be rinsed and dried every day so that they get their pressure back. When they are dry again they have regained their pressure.

The compression parts should also be replaced regularly. It varies how often they need to be replaced, it can depend on the type of lymphedema you have but also how much they wear.

It is important that you follow the instructions on how to handle the compression parts.

Exercise

It is good to exercise if you have lymphedema, it can reduce the swelling. Exercising regularly helps the lymphatic system and the venous system to transport the lymph from the lymphedema area. You should do movements with your entire arm or leg to get large muscle groups started. Then exercise can affect the lymphatic edema. It is not enough to just make movements with your hand or foot. For example, carrying heavily a longer distance with still arms causes circulation to decrease. It can aggravate lymphedema.

Adjust the load on the muscles

It may be good to train with professional help in the beginning so that you build up the strength and ability of the lymphatic system. Many heavy lifting or other heavy workouts can make your lymphatic system worse if you haven’t exercised so much.

It varies from person to person how much capacity you have in the muscles and the lymphatic system. Some think that strength training feels good and others think it makes the lymphedema worse.

Usually, the volume of fluid increases immediately after exercise or heavy bodywork and you can become more swollen. The swelling usually decreases within a day even in the area where you have lymphedema if you use compression parts.

Good to work out with compression parts

It is good if you have compression parts on you when you exercise. This is especially true if you have lymphedema in the legs. 

In the case of arm edema, the load on the lymphatic system is not as great as in leg edema. Therefore, you who have arm edema can exercise without compression parts if you wish. 

Lymphatic drainage and lymph pulsator

Sometimes it doesn’t just help with compression parts treatment. Then you can get additional treatment with a special form of massage called lymphatic drainage. Then you get light rhythmic pressure against the swollen body part. You will receive the treatment daily for one to two weeks. It is important that treatment with lymphatic drainage be combined with some form of compression.

You can also get treatment with a so-called lymph pulsator. It is an electric air pump that can be tested at a special reception and that you can have at home. During treatment, you place the swollen body part in a case. The case is then filled with air and then emptied. That way you get a pulsating pressure on the lymphatic edema. How often, what pressure, and how long the lymph pulsator should be used varies from person to person.

Treatment of lymphedema in children

Children are treated in the same way as adults. But children may need special tools besides the compression parts.   

What can I do for myself?

You may need to rest the swollen body part in a high position. In order to have a good effect, the rest should be for a longer period of time, for example when you sleep. How you should do depends on which body part you have lymphedema.

Wash, dry and lubricate

It is also important that you keep the skin at the lymphedema clean and soft to avoid cracks and infections of the skin. You can use a softening skin cream that you enjoy.

It is important that you get treatment if you have fungal infections, eczema, ulcers or allergic skin reactions. Contact a health care provider if you have any problems with this.

At the workplace

You who have lymphedema and have a job when you sit still a lot should take a break often and move on. You who have lymphedema in one arm need to make large movements with the arm. You who have lymphedema in the legs need to touch them. This can be, for example, by walking at a brisk pace or walking downstairs. Sometimes it can help to put your feet up on the desk if you have a job where it works.

Often you can find good solutions that are right for you. You can contact occupational health care if you need help adjusting your workplace or if you need to change your duties.

Follow-up of treatment for lymphedema

You should undergo regular checkups after receiving treatment for lymphedema. Then the size of the lymphedema, your weight, and your compression parts are measured. At the beginning of the treatment, the checks are usually done every month until the treatment results and the edema does not increase. Then you regularly measure yourself or go on checks one to two times a year. It depends on the procedures available at the reception.

You can measure the lymphedema yourself

You can measure your lymphedema yourself. You do this by measuring the perimeter in several places where you are swollen, such as your arm or leg. Then you compare the perimeter with the other arm or leg where you have no lymphedema.

You can also take a skin crease between the thumb and forefinger and compare it to the same area on the side of the body where you do not have lymphedema. It can be difficult to measure lymphedema on the trunk or head, but try to compare skin folds.

How can I prevent lymphedema?

The risk of getting lymphedema increases if you are overweight and if you are inactive and are very still. It is common to gain weight during treatment with cytostatic drugs or with anti-hormonal therapy. The lymphedema gets bigger if you gain weight and less if you lose weight. Therefore, it is good to be physically active during cancer treatment.

Complications and sequelae

Very large lymphedema can cause pain in other parts of the body. For example, lymphedema in one arm can cause you back and neck pain. In the same way, a swollen foot can lead to failure loads that affect the joints of the leg and back.

Rose fever can make the lymphedema worse

The infection rose fever can cause lymphedema, but the infection can also cause the lymphedema to become larger. It is therefore important that you seek care if you have symptoms of rose fever. You who have had rose fever attacks several times may need to have medicines at home if you get symptoms or if you get a wound or a stab injury.

The lymphedema can be converted into adipose tissue

The lymphedema can be converted into adipose tissue if the treatment with compression does not help. Then you can be treated with liposuction. This means that the excess fat tissue is removed during an operation. After the operation, it is important that you use compression parts so that the lymphedema is not replenished. 

Living with lymphedema

It may feel painful to have compression pants on. In the summer, the heat can be extra stressful. It is therefore important that you have compression pants that fit well. Then it can be less troublesome. 

You need to take care of the lymphedema

You may need more time than before to take care of your skin. You may also need more time to rest the swollen body part in high position or to exercise to keep circulation going. It also takes time to wash the compression parts and take care of them.

Some who have lymphedema have difficulty finding clothes and shoes that fit. They may need tailor-made clothing or order special shoes. It is important that you do not have shoes and clothes that tighten. This can make the lymph fluid more difficult to transport.

You may also need to change your habits and, for example, not be too long.

Lymphedema of the abdomen can make it difficult to take care of their hygiene. It can also affect sex life. At many rehabilitation clinics, there is a sexologist who can advise.

You who have lymphedema in your mouth may also need to change your eating habits. Then a dietician can give advice.

Influence and participate in your care

You can seek care at any medical center or open specialist clinic you want throughout the country. Sometimes a referral  to the open specialist care is required.

You should understand the information

In order for you to be involved in your care and treatment, it is important that you understand the information you receive from the healthcare staff. Ask questions if you don’t understand. For example, you should receive information about treatment options and how long you may have to wait for care and treatment.

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