Lymphedema: What is it and what to do about it?
Updated: Aug 26, 2019
Lymphedema, or lymphatic obstruction, is a long-term condition where excess fluid collects in tissues causing swelling (edema).
The lymphatic system is a part of the immune system and vital for immune function. Fluid called lymph circulates within the lymphatic system. Lymphedema is typically caused by a blockage of this system.
Lymphedema commonly affects one of the arms or legs. In some cases, both arms or both legs may be affected. Some patients might experience swelling in the head, genitals, or chest.
Lymphedema is incurable, but with the right treatment, it can be controlled.
Fast facts on lymphedema
Here are some key points about lymphedema. More detail and supporting information is in the main article.
Experts believe primary lymphedema is caused by genetic mutation.
Secondary lymphedema can be caused by other conditions such as infections and inflammatory diseases.
In some cases, lymphedema can lead to skin infections and lymphangitis.
Protecting the skin can help reduce the risk of lymphedema.
Swelling is a typical symptom of lymphedema and commonly affects legs and arms.
Lymphedema is incurable. However, treatment can help reduce the swelling and pain.
Complex decongestive therapy (CDT): This starts with an intensive therapy phase, during which the patient receives daily treatment and training. This is followed by the maintenance phase when the patient is encouraged to take over their own care using techniques that they have been taught.
The four components of CDT are:
Remedial exercises: These are light exercises aimed at encouraging movement of the lymph fluid out of the limb.
Skincare: Good skincare reduces the risks of skin infections, such as cellulitis.
Manual lymphatic drainage (MLD): The lymphedema therapist uses special massage techniques to move fluid into working lymph nodes, where they are drained. The lymphedema therapist also teaches several massage techniques that can be used during the maintenance phase.
Multilayer lymphedema bandaging (MLLB): Wrapped over muscles surrounding lymph vessels and nodes to help the fluid move through the lymphatic system.
Unlike the circulation of blood, there is no central pump (heart). The aim is to use bandages and compression garments to support the muscles and encourage them to move fluid out of the affected body part. Patients will also be taught how to apply their own bandages and compression garments correctly so that MLLB can continue during the maintenance period. A range of compression stockings is available for purchase online.
Surgery has historically had disappointing results compared with non-surgical therapies for lymphedema. However, a new surgical technique using liposuction has proved more successful. It removes fat from the affected limb, resulting in less swelling.
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A CT scan can reveal blocked areas in the lymphatic system contributing to lymphedema.
Primary lymphedema may be caused by mutations in some of the genes involved in the development of the lymphatic system. These faulty genes interfere with the lymphatic system's development, undermining its ability to drain fluid properly.
Secondary lymphedema has a number of possible causes, including:
Cancer surgery: Cancer may spread through the body via the lymphatic system. Sometimes surgeons remove lymph nodes to stop the spread. There is a risk the lymphatic system may be affected, leading to lymphedema.
Radiation therapy: The use of radiation to destroy cancerous tissue can sometimes damage nearby healthy tissue, such as the lymphatic system; this can result in lymphedema.
Infections: Severe cellulitis infection may damage tissue around the lymph nodes or vessels. This may lead to scarring, increasing the risk of lymphedema. Some parasite infections can also increase the risk of lymphedema.
Inflammatory conditions: Conditions that cause tissue to swell (become inflamed) may permanently damage the lymphatic system, such as rheumatoid arthritis and eczema.
Cardiovascular diseases: These are diseases that affect blood flow. Some patients with cardiovascular diseases have a higher risk of developing lymphedema, such as DVT (deep vein thrombosis), venous leg ulcers, and varicose veins.
Injury and trauma: More rarely, severe skin burns or anything that results in excessive scarring may raise the risk of developing lymphedema.
Lymphedema affects the lymphatic system. This system has three main functions:
Draining excess tissue fluid: It balances the fluid in the blood and the fluid in the tissues. This is known as fluid homeostasis.
Fighting infection: It provides immunity by assisting the body's immune defense against foreign bodies, such as bacteria.
Absorbing fats: It absorbs lipid nutrients from the intestine and transports them to the blood.
A disruption to the lymphatic system can, in the long term, undermine its ability to drain fluid properly. As a result, excess fluid can build up in parts of the body.
Lymphedema increases the risk of infection and other complications because the lymphocytes cannot reach parts of the body where swelling occurs.
There are two main types of lymphedema:
Primary lymphedema - often called congenital lymphedema. The lymphedema is evident at birth or shortly after puberty. This type of lymphedema is rare, affecting approximately 1 in every 6,000 people.
Secondary lymphedema - the lymphedema occurs as a result of something else, such as an infection, injury, trauma, or cancer that affects the lymphatic system.
Lymphedema may be a side effect of cancer treatment, such as radiation therapy or the removal of some lymph nodes, which can damage the lymphatic system. This type of lymphedema is more common.
Lymphedema symptoms include:
swelling of either a part or the whole leg or arm, including the fingers or toes, ranging from slight changes in limb size to severe swelling
difficulty wearing jewelry or watches or fitting into clothes or shoes
swelling in the head or neck
a heavy or tight feeling in the arms or legs
the range of motion of the limb is restricted
discomfort or aching in the affected limb
a tingling sensation in the affected limb, like pins and needles
recurring skin infections
thickening and hardening of the skin
blisters or wart-like growths on the skin
Tests and diagnosis
A doctor will try to rule out other possible causes of swelling, including a blood clot or an infection that does not involve the lymph nodes.
If the patient is at risk of lymphedema, for instance, if they recently had cancer surgery or treatment involving the lymph nodes, the doctor may diagnose lymphedema based on the symptoms.
If there isn't an obvious cause for the lymphedema, some imaging tests may be ordered. The following imaging techniques may be used to have an in-depth look at the lymphatic system:
Doppler ultrasound scan
Lymphoscintigraphy may also be used - a radioactive dye is injected into the lymphatic system. The nuclear scanner shows the dye's movement through the lymphatic system and identifies any blockages.
People with lymphedema are encouraged to follow a healthful lifestyle, including moving and exercising regularly.
However, in some cases, specialist help may be needed to exercise safely and effectively.
A study has found that women who are at risk of lymphedema following breast cancer surgery will not be at higher risk of lyphedema in the arm if they do gentle lifting exercises. Such exercise, say the researchers, may reduce the risk of lymphedema.
The types of exercises that may be beneficial are those that:
Also recommended is aerobic exercise that focuses on the upper body, helps with weight loss, and encourages deep breathing.
If any heaviness or change in shape, texture or other change in the limb should be monitored. It may be a sign that the current exercise level is too high.
Experts believe that the muscles act as a pump during exercise, pumping the lymph to areas where it is needed.
However, there is not yet enough evidence to support any specific type of exercise for lymphedema. Women who have undergone breast cancer surgery are advised to seek out a specialized physical therapist or other health professional who can help them to build up exercise gradually.
Repeated episodes or untreated lymphedema can lead to other complications. These include:
Skin infections: Repeated episodes of cellulitis are common with lymphedema. Cellulitis is a bacterial infection of the deeper layers of skin and the fat and soft tissue layers under the skin.
Lymphangitis: An inflammation of the lymph vessels can develop, and when infectious, it is usually caused by a Streptococcus bacterial infection. If left untreated, it can spread to the skin and adjacent soft tissues, causing cellulitis, or into the bloodstream, causing bacteremia.
Psychological effects: Lymphedema can affect the appearance, and this can have a psychological impact, especially in those who have been living with cancer. Lymphedema increases the risk of developing depression.
The affected limb is more vulnerable to skin infections because the supply of lymphocytes (which fight infection) is reduced.
If the patient takes measures to minimize the risk of cuts and grazes to the skin, their risk of subsequent infections may be significantly reduced. The following measures may help:
Avoiding hot showers, steam rooms, and saunas may help prevent symptoms of lymphedema.
After cancer treatment, avoid heavy activity with the affected limb; rest it while recovering.
Avoid sun beds, steam rooms, and saunas.
Do not take very hot baths or showers.
Do not wear tight-fitting clothes.
Do not wear tight-fitting jewelry.
Don't go barefoot outdoors.
Look for changes or breaks in the skin.
Keep your skin supple by moisturizing it every day.
Make sure footwear fits properly.
To prevent developing athlete's foot, use an anti-fungal foot powder.
Use gloves when gardening.
Keep nails short.
When going outside in an area where there may be insects, use insect repellent.
When out in the sun, use a high factor sun block.
When you have a cut, treat it immediately with an antiseptic cream. And keep the area clean.
Raise the affected limb above the level of the heart whenever possible.
Avoid blood pressure checks, blood draws, or injections in the affected limb.
Diet, body weight, and obesity
The heavier a patient is, the higher the strain on the areas that are swollen. A healthy diet, aiming for an ideal body weight, may help alleviate the signs and symptoms of lymphedema.
There is no cure for lymphedema, and it is a progressive condition. The outlook will depend to some extent on the severity of symptoms.
Following a healthful lifestyle, including a balanced diet and movement or exercise can help reduce fluid buildup and stimulate the flow of lymph. Follow the physician's advice about the best option for you.
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