Lymphedema: What to Know

Medically Reviewed by Poonam Sachdev on April 03, 2024
10 min read

Lymphedema is swelling that's caused by a collection of too much lymph fluid. It usually affects your arms and legs, but it can happen in other parts of your body as well. This swelling can cause pain and limit movement in the affected area. It may also make you feel self-conscious about your appearance.

Lymph is a protein-rich fluid that moves throughout your body in lymph vessels. It scoops up things such as bacteria, viruses, and waste, and carries them to your lymph nodes. Your lymph nodes then filter the fluid to get the impurities out of your body.

You could get lymphedema for several different reasons. While there's no cure, there are treatments to bring down the swelling so you feel and move better.

Any time your lymphatic system is damaged or has a blockage, the fluid can build up in the soft tissue beneath your skin. This can happen for no known reason, or because you have a genetic defect. But more commonly, it's a result of damage from things such as:

  • Injury
  • Infection
  • A tumor
  • Parasites
  • Scar tissue from surgery
  • Heart disease
  • Kidney disease
  • Vascular (blood vessel) disease
  • Obesity, which puts extra pressure on your lymphatic system
  • Inactivity, which affects the circulation of lymph fluid in your leg muscles

Cancer and lymphedema

Cancer can harm your lymphatic system in several ways. A cancerous tumor can physically keep lymphatic fluid from draining properly. A buildup of extra white blood cells due to leukemia can lead to lymphatic damage. So can radiation treatment for cancer or surgery to remove lymph nodes, which may be done to see whether cancer has spread. It may take months or years for lymphedema to show up after cancer treatment.

Cancers that form near lymph nodes and vessels, such as those in the abdomen, breast, or genital areas, are more likely to lead to lymphedema.

There are two types of lymphedema:

Secondary lymphedema. This type is caused by another condition or disease that damages your lymph vessels or nodes. It most often affects people who've had breast cancer treatment. It affects about 1 in every 1,000 people in the U.S.

Primary lymphedema. This type is much less common, affecting only about 1 in every 100,000 people in the U.S. It’s a genetic problem that happens because your lymph nodes or vessels either aren't properly developed or are missing altogether. Symptoms of primary lymphedema can start in infancy, childhood, adolescence, or adulthood.

Scrotal lymphedema

It's a rare type of lymphedema that affects the scrotum. It's sometimes called genital lymphedema, though genital lymphoma can also affect the penis as well as the pelvis and labia in those with female anatomy. Scrotal lymphedema can be primary or secondary. But it most often results from either an infection or cancer or its treatment. It can be disabling if not treated.

The most common symptom of lymphedema is swelling in one or both arms or legs. This swelling, which can extend into the fingers or toes, usually develops gradually over time. But sometimes, it happens suddenly.

At first, the swelling is soft and fluid. Over time, it can become more dense and fibrous, making your skin look grainy. Other symptoms of lymphedema may include:

  • Clothing and jewelry that feel too tight
  • Skin that looks red, puffy, or thick, and may feel hard
  • Arms or legs that look like they're different sizes
  • Pain, heaviness, or limited motion in the affected limb
  • Stiff joints
  • Veins and tendons in your hands or feet no longer being visible
  • Repeated infections

What does lymphedema pain feel like?

You may feel like your skin is too tight, or your arm or leg could feel heavy. You also might notice numbness, tingling, or a burning or itching feeling. If you have lymphedema in your belly or genital area, it might hurt to walk, have sex, or move in other ways.

Doctors group lymphedema into stages based on how serious it is:

Stage 0. The area where you have lymphedema might feel tight or heavy but doesn't look swollen. Some people don't have any symptoms at this stage.

Stage I. You sometimes have swelling and a heavy feeling in the affected area. When you press on it, it leaves a temporary dent in your skin. You may get relief from rest or by propping up the affected arm or leg.

Stage II. The part of your body where you have lymphedema looks swollen most of the time and feels harder than the surrounding area. There's no dent when you press on it. Rest and propping up the limb don't help.

Stage III. The affected area looks very swollen and the skin there feels thick and firm. You may lose some range of motion.

Many different conditions can cause swelling. To figure out what's causing it, your doctor will start by asking about your symptoms and medical history. If they think you may have lymphedema, there are several imaging tests to help them make a diagnosis.

These tests include:

Lymphoscintigraphy. Your doctor injects you with a trace amount of radioactive material and then uses a scanning machine to trace its flow through your lymph nodes. This can detect blockages or missing lymph vessels. 

Indocyanine green (ICG) lymphography. Your doctor injects you with a type of medical dye and observes how well the dye travels through your lymphatic system.

CT scan. This type of scan uses X-rays to create a cross-section view of the inside of your body and reveal any blockages.

MRI. Radio waves are used to make 3D images of the inside of your body. This allows your doctor to see if something like a tumor has affected your lymphatic system.

Ultrasound. This test uses high-frequency sound waves to create images that help your doctor spot any blockages in your lymphatic or vascular systems. It helps them see whether you might have another condition, such as a blood clot, that could cause swelling.

Lymphedema vs. edema

"Edema" is a general term that means swelling, while lymphedema is swelling due to an issue with your lymphatic system. You can get edema as a result of heart conditions, kidney failure, or vein problems. While these conditions affect your entire body, lymphedema affects only one particular area.

Lymphedema vs. lipedema

With lipedema, you have an abnormal buildup of fat on both sides of your lower body that doesn't respond to diet and exercise. Doctors aren't sure what causes it, but it runs in families. The two conditions aren't the same, but lipedema can sometimes cause lymphedema.

Your treatment for lymphedema will depend on what caused it and how serious it is. It usually includes techniques that aim to physically move lymphatic fluid away from the swollen area, such as physical therapy, compression garments, and bandages. Physical therapists specially trained in lymphedema can teach you about these treatments.

Treatments might include:

Compression garments. These tight-fitting fabric sleeves or stockings put pressure on the affected limb to help lymph fluid circulate.

Bandages. Wrapped in just the right way, they help push lymph fluid toward the trunk of your body. You may also wear them to help prevent excess lymph fluid from returning to your affected limb.

Lymphedemamassage. This type of light massage moves fluid from swollen areas to other parts of the body, where healthy lymph vessels can carry it away. You can learn how to use these massage techniques on yourself. You might also hear this called manual lymph drainage.

Lymphedema pump. A compression sleeve is attached to a pump that applies and removes pressure on your arm or leg on a timed schedule to move lymph fluid out.

Lymphedema exercise.You gently tense muscles in the affected area to promote lymph drainage and strengthen the affected limb.

Medications. Your doctor may prescribe antibiotics if your lymphedema is due to an infection. They can also prescribe pain medication.

Surgery for lymphedema

If you have advanced lymphedema and other treatments haven't helped, your doctor might recommend one of these procedures:

Lymphatic bypass. A surgeon creates connections between your lymphatic system and your blood vessels to allow lymph fluid to drain into your vein system.

Lymph node transplant. Your surgeon will transplant healthy lymph nodes from another part of your body into the area affected by lymphedema.

Fibrous tissue removal. if you end up with hardened skin that limits your movement, a doctor can remove this fibrous tissue with liposuction or surgery.

Over time, lymphedema may lead to other problems including infection, and in very rare cases, cancer. That's why it's important to see a doctor if you have any swelling that doesn’t go away.

Lymphedema and cellulitis. Cellulitis is a potentially serious skin infection that can result from lymphedema. It's easy for germs to grow in the fluid that collects under your skin. It's also easy to get an injury that could lead to infection when the skin over the swollen area is stretched thin. See your doctor right away if you have a fever, or if your skin feels warm or looks red and more swollen than usual. They can prescribe antibiotics to treat the infection.

Sepsis. Left untreated, cellulitis can move into your bloodstream. This can cause a very dangerous condition called sepsis that requires emergency medical care.

Changes in your skin. Serious lymphedema can make the skin in the area become very thick and hard. This may make it harder to move.

Lymph fluid leakage. Serious swelling can cause the lymph fluid to leak out through tiny breaks in your skin. This is called lymphorrhea. The constant dampness makes your skin more prone to damage and infection.

Cancer. Serious lymphedema that goes untreated could lead to a type of soft tissue cancer called lymphangiosarcoma.

To keep yourself as comfortable as possible and avoid making your lymphedema worse, take these steps:

Wash your hands often. This is one of the most important ways to prevent infection. Use soap and warm water. It's especially important to clean your hands after you use the restroom and before you prepare food.

Use elevation. When possible, keep the swollen area lifted higher than your heart. You can prop your arm or leg on a pillow or rolled blanket.

Keep moving. Physical activity helps lymph fluid keep flowing and boosts heart health. Talk to your doctor about what type of exercise you do and how much. Don't overdo it. Always take time to warm up and cool down, and don't do any exercise that's painful.

Reach and maintain a healthy weight. If you have extra weight, it worsens swelling from lymphedema by putting pressure on the lymph nodes.

Protect yourself from injury. To avoid a cut or scrape that could lead to infection, wear gloves when you do household or outdoor chores. Opt for an electric razor instead of a manual one, and use bug repellents to prevent bites.

  • Treat injuries quickly. If you get a cut or scrape -- even a minor one -- wash it with soap and water. Put antibiotic ointment on the wound and cover it with a bandage.

Lymphedema diet

A diet mostly made up of fruits, vegetables, whole grains, and lean proteins is best for overall health. It can also help you reach and maintain a weight that's right for you, which helps keep lymphedema under control.

Drink enough fluid to stay hydrated, which can help you flush out extra fluids. For most people, that's about eight 8-ounce glasses of water a day. Also cut down on salt, which can lead to fluid retention.

What should you not do with lymphedema?

Avoid the sun and high temperatures. Heat can make your condition worse.And sunburn causes skin damage that raises your risk for infection. If you're planning to be out in the sun, wear a hat and protective clothing and use sunscreen.

Don't put pressure on the swollen area. Avoid tight clothing, shoes, and jewelry. If one of your arms is affected by lymphedema, don't carry a purse or use a blood pressure cuff on that side.

Lymphedema is swelling that results from the buildup of too much lymph fluid in one area of your body, usually an arm or leg. It's most commonly caused by an infection, cancer, or a treatment for cancer. There's no cure, but there are ways to reduce the swelling and prevent complications.

How does a person get lymphedema?

Lymphedema is caused by damage to the lymph nodes. The most common cause in developing countries is infection with tiny worms that block the lymph nodes. In the U.S., it's most often caused either by cancer itself or by radiation treatment or surgery for cancer. Some people have inherited conditions that cause defective lymph nodes.

What is life expectancy with lymphedema?

Lymphedema itself isn't life-threatening, but it raises your risk of skin infections that can be. It's rare, but lymphedema can also lead to a type of soft tissue cancer called lymphangiosarcoma.

Will lymphedema ever go away?

Sometimes, a very mild case of lymphedema will get better without treatment. But once your lymph system is damaged, it can't be fixed. Still, treatment can help manage your symptoms.