It’s very common to have swelling (edema) that doesn’t go away, especially as you get older. People often have chronic swelling in their legs, but it can happen throughout the body.

One cause of chronic swelling is lymphedema, a medical condition that can develop when there are problems with the lymphatic system. Lymphedema may get worse over time and won’t go away on its own. That’s why it’s important to seek treatment if you think you have lymphedema.

Below, we explain the causes and stages of lymphedema, plus treatments to help keep symptoms under control.

What is lymphedema? A buildup of lymph fluid under your skin

Lymphedema is a condition that causes swelling in different parts of your body, including your legs, arms, stomach, neck and genital area. It happens if your lymphatic system doesn’t work properly because your lymph nodes have been damaged or removed.

The lymphatic system includes a network of vessels, nodes and ducts, and is an important part of your immune system. It collects fluid, proteins and toxins from your cells and tissues, and destroys the old or abnormal cells. It also moves a colorless, watery fluid (lymph fluid) back into your bloodstream.

Lymph nodes are the part of the lymphatic system that trap and destroy the foreign substances like tumor cells, bacteria and viruses. If your lymph nodes are damaged or removed, your lymphatic system may not be able to collect and distribute the excess fluid from your tissues. Instead, lymph fluid builds up in your tissues, causing them to swell.

Where lymphedema starts: Anywhere you have lymph nodes

Lymphedema can start in any part of your body where you have lymph nodes – you have about 600 of these tiny bean-shaped organs throughout your body. They are mostly located where major blood vessels come together in your neck, armpits, chest, stomach, genital area and behind your ears.

Lymphedema symptoms by stage: How the condition can worsen over time

Lymphedema symptoms can be hard to spot at first but become more obvious with time. Without treatment, the condition can become serious. But if you start on a treatment plan when lymphedema is in its early stages, you’ll likely need fewer ongoing treatments. So, it’s important to make an appointment with a primary care doctor or follow-up with your oncologist if you think you have symptoms of lymphedema.

Lymphedema stages: What they mean

Stage 0-3: The affected area feels different

The first symptom of lymphedema is usually a change in how your body feels. With mild lymphedema, you may notice new aching, fullness or heaviness in an area of your body. On the other hand, you may not notice anything at all.

Later stages of lymphedema can be more uncomfortable, even painful. Lymphedema pain may feel like tightness, tingling, burning or itching. If you have a related skin infection (more on that below), your skin may be hot to the touch.

Stage 1-3: Swelling is the most obvious sign

With lymphedema, it’s most common to have swelling in part or all of one arm or leg – including fingers or toes – but you can also have swelling in your face, trunk, stomach or genital area.

Even if you haven’t gained weight, you might find you can’t get your arm in your jacket sleeve or button your pants. You may need to loosen your watch or leave the top button of your shirt open.

Since the excess fluid collects around the affected lymph nodes, swelling may be localized in one area of the body – your arms or legs may even be different sizes. For example, if you have lymphedema in your leg, you may find your shoe and pant leg are tight on one side but fit fine on the other.

In early stages, lymphedema swelling can be minimal and come and go. In later stages, chronic swelling can make an area appear twice (or more) its normal size.

Stage 2-3: Skin can harden and thicken

When you have a lot of swelling, it can make the affected skin look shiny and feel tight. If the swelling doesn’t go away, it can cause skin to harden and thicken – this is called fibrosis. The skin can also become darker in areas, flaky or develop small cracks.

If a person has severe lymphedema in one of their legs, they may develop dry warty spots on their ankles, feet and toes. In very severe cases, the skin can develop very thick folds and bulges, making it resemble elephant skin.

Stage 3: It’s harder to move the affected area

Chronic swelling and thicker skin around your joints can restrict your range of motion. If you have lymphedema in an arm or a leg, you may be unable to move the limb on its own. Instead, you may need to use your unaffected arm to move it along. This can make it difficult to do daily activities or exercise.

Stage 3: Skin infections can cause serious problems

Skin infections called cellulitis are more likely with later stage lymphedema. Since the immune system isn’t working as well, the body has a hard time fighting off bacteria from small injuries like a cut or scratch. These skin infections can look swollen, be painful and feel warm to the touch. Cellulitis is a medical emergency and can lead to sepsis if not treated.

Severe swelling can also cause small breaks in the skin and blisters that lymph fluid drains through. Without proper care, these sores can cause nonhealing wounds or skin infections.

Lymphedema causes: Why your lymphatic system may be damaged

Damage to the lymphatic system is usually the result of surgery, trauma, radiation therapy or another medical condition. In rare instances, it’s possible for lymphedema to be an inherited condition. Specific causes of lymphedema include:

Cancer treatment

Radiation therapy can cause damage or inflammation to lymph nodes. And surgery to remove lymph nodes may be recommended if there’s a chance that cancer has spread to them. You won’t necessarily get lymphedema after radiation or even after lymph node removal – there’s just a higher chance that you will.

Lymphedema after cancer treatment can show up soon after the procedure, or it can take months or years to develop. And while lymphedema can follow treatment of nearly any type of cancer, it’s more common when treating:

• Breast cancer
• Prostate cancer
• Pelvic area cancers (such as bladder, penile, testicular, endometrial, vulvar or cervical cancer)
• Lymphoma
• Melanoma
• Head and neck cancers

The location of lymphedema is often related to the area that was treated. For example, if lymphedema follows breast cancer treatment it can affect the breast, chest, armpit and arm.

Cancer and other tumors

If a tumor blocks part of the lymphatic system, such as a lymph node or a lymph vessel, your body may not be able to return lymph fluid to the bloodstream.

Trauma

It’s possible for a traumatic accident to cause damage to the lymphatic system, even if there’s no injury to the skin.

Infection

Infections, such as skin infections, can damage your lymph nodes and affect your body’s ability to move lymph fluid.

Being very overweight

Carrying extra weight can increase the pressure on lymph nodes and vessels, making it harder for lymph fluid to move into the bloodstream.

Inherited conditions

About 1 in 100,000 people get lymphedema caused by inherited conditions that affect how the lymphatic system works. These conditions almost always develop during childhood and include:

• Milroy’s disease – some babies are born with it
• Meige’s disease – affects people going through puberty, or pregnancy before age 35
• Lymphedema tarda – causes leg swelling in people over 35

A physical exam may be enough to diagnose lymphedema if you’re at an increased risk due to radiation or surgery that could have affected your lymph nodes.

If it’s unclear why you have swelling in your body, your doctor may recommend imaging tests (such as an ultrasound) to see if the cause is blocked lymph nodes or something else.

Can lymphedema go away? There’s no cure, but lymphedema treatments can help

It’s not possible to reverse the lymph node damage that causes lymphedema. And if lymph nodes have been removed, they’re gone permanently. But there are a range of treatments that can reduce swelling, discomfort and the risk of complications. And the sooner you start treatment, the easier it will be to manage your symptoms long term.

The goal of lymphedema treatment is to manage symptoms

One of the main goals of treatment is to keep the lymphatic fluid moving through your body. The best treatment for lymphedema is usually a combination of lymphedema therapy and self-care. Surgery may also be an option if you have severe lymphedema and other treatments don’t work.

Lymphedema therapy can help move trapped lymph fluid

We have specially trained occupational and physical therapists who provide rehabilitation for lymphedema. They can help with:

• Lymphatic massage (manual lymphatic drainage) – Your therapist will use light pressure to gently move trapped fluid toward an area with working lymph vessels.
• Compression bandages or garments – Your therapist may recommend wearing compression bandages, stockings or sleeves to reduce swelling and help move lymph fluid back into circulation. There are different levels of compression, and you may need a prescription to ensure you get the right one.
• Exercise and movement plan – In some cases, moving your muscles can help move lymph fluid away from a swollen area. Your therapist will recommend exercises if they make sense for you.
• Education – Your therapist will provide tailored information that will help you manage swelling on your own.
• Pneumatic compression therapy – For this therapy, you wear an inflatable sleeve over your affected arm or leg. When the sleeve is inflated, the pressure helps move lymph fluid away from swollen fingers and toes.

Medications are used for skin infections

If you get a skin infection, it will be important to start treatment right away. Your doctor may prescribe antibiotics to keep at home, so you can begin taking the medication immediately.

Self-care can help prevent skin infections and support healing

If you have lymphedema, you’ll need to work with a therapist or doctor to manage your symptoms, but there are things you can do at home that can help.

• Daily skin routine – Wash, moisturize and check your skin for damage such as cracks and cuts.
• Avoid skin injuries – You’ll also want to take extra steps to avoid injuring your skin, since burns, scrapes and cuts make it more likely that you’ll get skin infections and nonhealing wounds. For example, use an electric razor and wear kneepads when you garden.
• Make healthy choices – Your body may be able to heal more quickly when you eat a nutritious diet, make time for regular exercise and get the sleep you need.

Lymphedema surgery may reduce symptoms for severe cases

If you have severe lymphedema and other treatments don’t work, your doctor may recommend surgery to reduce (not cure) your symptoms.

• Creating new drainage paths: The doctor reroutes your lymphatic vessels and veins, so they go around the blockages that are preventing the lymph fluid from draining.
• Lymph node transplant: The doctor replaces damaged lymph nodes with healthy ones taken from a different part of the body.
• Removing hardened tissue: If lymphedema has caused soft tissue to harden, the doctor may surgically remove skin, fat or tissues that are blocking the lymph nodes.

When to see a doctor about swelling

There are different reasons why you may have swelling that won’t go away or keeps coming back. But it’s best to seek treatment as soon as possible since swelling can be a sign of a more serious condition.

If you think the swelling may be related to cancer treatment, contact your oncologist. Otherwise, make an appointment with your primary care doctor. Either doctor can help identify what’s causing your symptoms and how to manage them. If necessary, they can provide a referral for specialty treatment.