7 Key Signs and Symptoms of Lymphedema You Should Know

Lymphedema is a chronic condition characterized by abnormal swelling that occurs when lymph fluid accumulates in the body’s tissues, most commonly in the arms or legs. This condition develops when the lymphatic system, which is responsible for draining excess fluid and filtering waste products from the body, becomes damaged or blocked. Lymphedema can be either primary (present from birth or developing later due to genetic factors) or secondary (caused by damage to the lymphatic system from surgery, radiation, infection, or injury).

Understanding the symptoms of lymphedema is crucial for early detection and management. While the condition is chronic and currently has no cure, recognizing the warning signs early can help prevent complications and improve quality of life. The severity of symptoms can range from mild to severe, and they may develop gradually over months or even years, or appear suddenly after a triggering event.

In this comprehensive guide, we’ll explore the seven key symptoms of lymphedema, helping you identify this condition and understand when to seek medical attention.

1. Swelling in the Affected Limb or Body Part

The hallmark symptom of lymphedema is persistent swelling, typically occurring in one or both arms or legs, though it can affect other parts of the body including the chest, abdomen, or genitals. This swelling results from the accumulation of protein-rich lymph fluid in the tissues beneath the skin.

The swelling associated with lymphedema has several distinctive characteristics:

• Progressive nature: The swelling often starts gradually and may be barely noticeable at first, but it tends to worsen over time if left untreated
• Asymmetry: Lymphedema typically affects one limb more than the other, creating a noticeable size difference between arms or legs
• Non-pitting in advanced stages: In early stages, pressing on the swollen area may leave a temporary indentation (pitting), but as the condition progresses, the swelling becomes firmer and doesn’t pit
• Extends beyond joints: The swelling often encompasses the entire limb, from fingers/toes to shoulder/hip, rather than being localized to one area

The swelling may initially be mild and improve with elevation or overnight rest, but as lymphedema advances, it becomes more persistent and difficult to reduce. Some people notice their affected limb feels heavy or full, even before visible swelling becomes apparent.

2. Feeling of Heaviness or Tightness

Many people with lymphedema report a sensation of heaviness, tightness, or fullness in the affected limb before obvious swelling becomes visible. This symptom can be one of the earliest warning signs of the condition and should not be ignored.

This sensation occurs because lymph fluid is accumulating in the tissues, creating pressure and adding actual weight to the limb. Patients often describe it as:

• A feeling that the arm or leg is “weighted down” or pulling on the body
• Tightness in the skin, as if it’s being stretched
• A sensation similar to wearing a tight band or garment around the limb
• Achiness or discomfort that worsens throughout the day or with activity

This heaviness typically worsens with prolonged standing, sitting, heat exposure, or physical activity, and may improve slightly with elevation. The sensation can significantly impact daily activities, making it difficult to use the affected limb normally or causing fatigue from carrying the extra weight.

3. Limited Range of Motion

As lymphedema progresses and swelling increases, many individuals experience decreased flexibility and reduced range of motion in the affected limb and its joints. This symptom can significantly impact daily functioning and quality of life.

The limitation in movement occurs for several reasons:

• Tissue swelling: The accumulated fluid creates physical bulk that restricts joint movement
• Skin tightness: As tissues swell, the skin stretches and feels tight, making it uncomfortable or difficult to bend joints fully
• Tissue fibrosis: Over time, chronic swelling leads to tissue hardening, further limiting flexibility
• Weight of the limb: The added weight makes it more difficult to move the limb through its normal range

Common mobility issues include difficulty bending the knee or elbow, reduced ability to make a fist or curl toes, stiffness in the shoulder or hip, and challenges with everyday tasks like reaching overhead, walking, or gripping objects. This reduced mobility can create a vicious cycle, as decreased movement further impairs lymph drainage, potentially worsening the swelling.

4. Skin Changes and Texture Abnormalities

Lymphedema causes several distinctive changes to the skin’s appearance and texture on the affected limb. These changes occur because the accumulated lymph fluid alters the skin and underlying tissues over time.

Common skin changes associated with lymphedema include:

• Thickening: The skin may become noticeably thicker and less pliable, sometimes described as having a “woody” or leathery texture
• Peau d’orange appearance: The skin may develop a dimpled, orange-peel texture due to swelling around hair follicles
• Color changes: The affected area may appear darker, redder, or have a different color than surrounding skin
• Dryness and scaling: The skin often becomes very dry, flaky, and prone to cracking
• Hyperkeratosis: Warty, rough patches may develop on the skin surface
• Papillomas: Small, fluid-filled blisters or bumps may appear and can leak clear fluid

These skin changes are not merely cosmetic; they indicate advancing lymphedema and increase the risk of complications such as skin infections. The altered skin barrier function makes it easier for bacteria to enter, while the protein-rich lymph fluid provides an ideal environment for bacterial growth.

5. Achiness, Discomfort, or Pain

While lymphedema is not typically considered a painful condition, many people experience varying degrees of discomfort, achiness, or pain in the affected limb. The nature and intensity of these sensations vary considerably from person to person.

Pain and discomfort in lymphedema can manifest as:

• Dull, aching sensation: A persistent, nagging ache in the swollen limb that worsens with use or at the end of the day
• Burning or tingling: Some people report burning sensations or pins-and-needles feelings
• Pressure sensation: A feeling of internal pressure or bursting in the affected area
• Sharp pains: Occasional shooting or stabbing pains may occur, particularly when the swelling is severe
• Joint discomfort: The joints in the affected limb may become achy or stiff

The discomfort associated with lymphedema often increases with activity, heat exposure, or prolonged periods in one position, and may improve somewhat with rest and elevation. While the pain is usually mild to moderate, it can be significant enough to interfere with sleep, daily activities, and overall quality of life.

6. Recurring Infections (Cellulitis or Lymphangitis)

One of the most serious complications and symptoms of lymphedema is an increased susceptibility to skin and tissue infections, particularly cellulitis and lymphangitis. The compromised lymphatic system cannot effectively fight off bacteria, making infections more common and potentially severe.

Cellulitis is a bacterial infection of the deeper layers of skin and underlying tissue. In people with lymphedema, cellulitis symptoms include:

• Sudden onset of redness, warmth, and swelling in the affected limb
• Fever and chills
• Flu-like symptoms including fatigue and body aches
• Tender, painful skin that may appear shiny or tight
• Red streaks extending from the infected area

Lymphangitis is an infection of the lymphatic vessels themselves, characterized by red streaks running along the affected limb, often accompanied by fever and swelling of nearby lymph nodes.

These infections require immediate medical attention as they can worsen rapidly and lead to serious complications. Each infection episode can also cause additional damage to the lymphatic system, creating a cycle of worsening lymphedema. People with lymphedema may experience multiple infection episodes per year, and preventing infections becomes a critical aspect of managing the condition.

7. Deep Skin Folds and Creases

As lymphedema progresses, the accumulating fluid and changing tissue composition can cause distinctive deep skin folds and creases to develop, particularly at the base of fingers or toes and around joints. These changes represent more advanced lymphedema and indicate significant tissue alteration.

Characteristic features include:

• Stemmer’s sign: This is a diagnostic indicator where it becomes impossible or very difficult to pinch and lift a fold of skin at the base of the second toe or finger due to thickening. A positive Stemmer’s sign strongly suggests lymphedema
• Bracelet-like creases: Deep horizontal creases may develop around the wrist or ankle, appearing like tight bracelets
• Squared-off appearance: The normal tapering of limbs may be lost, with the limb taking on a column-like or squared appearance
• Skin folding: Excessive tissue may cause the skin to fold over itself, particularly around joints or where the limb meets the body

These deep folds create additional challenges, as they can trap moisture and debris, increasing the risk of fungal infections and skin breakdown. The folds may also make proper skin care and hygiene more difficult, requiring extra attention to keep the area clean and dry.

Main Causes of Lymphedema

Understanding what causes lymphedema is essential for both prevention and early recognition of the condition. Lymphedema is classified into two main categories based on its underlying cause:

Primary Lymphedema

Primary lymphedema results from congenital abnormalities in the development of the lymphatic system. These conditions are relatively rare and can be present at birth or develop later in life:

• Congenital lymphedema: Present at birth due to malformed or missing lymphatic vessels
• Lymphedema praecox: Typically appears during puberty or pregnancy, most commonly affecting females
• Lymphedema tarda: Develops after age 35, often without an obvious trigger
• Genetic syndromes: Certain hereditary conditions like Milroy disease or Meige syndrome affect lymphatic development

Secondary Lymphedema

Secondary lymphedema is much more common and occurs when the lymphatic system is damaged by external factors:

• Cancer treatment: Surgical removal of lymph nodes, radiation therapy, or both can damage the lymphatic system. Breast cancer treatment is a particularly common cause, but any cancer treatment involving lymph nodes can lead to lymphedema
• Surgery: Operations that involve removing or cutting lymph nodes or vessels, particularly in the groin, armpit, or pelvis
• Radiation therapy: Can cause scarring and inflammation of lymph nodes or lymphatic vessels
• Infection: Parasitic infections (particularly lymphatic filariasis in tropical regions), bacterial infections, or other infections that damage lymphatic vessels
• Trauma or injury: Severe injuries, burns, or wounds that damage lymphatic vessels
• Venous insufficiency: Chronic vein problems that lead to swelling can eventually overwhelm the lymphatic system
• Obesity: Excess weight can impair lymphatic function and increase the risk of developing lymphedema
• Immobility: Prolonged lack of movement can reduce the muscle contractions needed to pump lymph fluid

In the case of lymphedema in the legs specifically, common causes include pelvic or abdominal surgeries, radiation to the pelvis or abdomen, gynecological cancers and their treatments, chronic venous insufficiency, obesity, and infections affecting the lower extremities.

Prevention Strategies

While not all cases of lymphedema can be prevented, particularly primary lymphedema, there are important strategies that can reduce the risk of developing secondary lymphedema or minimize its severity:

For Those at Risk After Cancer Treatment

• Protect the at-risk limb: Avoid injections, blood draws, blood pressure measurements, and IV lines in the affected limb when possible
• Prevent injuries: Use caution with activities that could cause cuts, scrapes, burns, or insect bites; wear gloves for gardening and household chores; use electric razors instead of manual ones
• Avoid extreme temperatures: Limit exposure to very hot baths, saunas, or hot tubs, and protect the limb from extreme cold
• Maintain healthy weight: Obesity significantly increases lymphedema risk, so achieving and maintaining a healthy weight is crucial
• Exercise regularly: Gentle, progressive exercise helps maintain lymphatic flow; consult with healthcare providers about appropriate activities
• Avoid tight clothing and jewelry: Don’t wear restrictive clothing, tight jewelry, or elastic bands that might impede lymph flow

General Prevention Measures

• Skin care: Keep skin clean, moisturized, and intact to prevent infections; treat any cuts or breaks promptly with antibiotic ointment
• Avoid constriction: Don’t cross legs when sitting, avoid carrying heavy bags on the at-risk shoulder, and don’t wear tight blood pressure cuffs
• Monitor for early signs: Watch for any swelling, heaviness, or changes in the at-risk limb and report them promptly to healthcare providers
• Consider compression garments: For some high-risk individuals, preventive use of compression garments during air travel or strenuous activity may be recommended
• Prompt infection treatment: Seek immediate medical attention for any signs of infection in the at-risk limb

Early intervention is key—recognizing and addressing lymphedema in its earliest stages can prevent progression to more severe forms of the condition.

Frequently Asked Questions

What is lymphedema?

Lymphedema is a chronic condition characterized by swelling that occurs when lymph fluid accumulates in body tissues, usually in the arms or legs. It happens when the lymphatic system, which normally drains excess fluid from tissues, becomes damaged or blocked and cannot function properly.

What are the early warning signs of lymphedema?

Early warning signs include a feeling of heaviness or fullness in the limb, mild swelling that may come and go, aching or discomfort, tightness in the skin, reduced flexibility in joints, and changes in how clothing, shoes, or jewelry fit. These symptoms may be subtle initially but should prompt medical evaluation, especially in those at risk.

Can lymphedema go away on its own?

No, lymphedema is a chronic, progressive condition that does not resolve on its own. However, with proper management including compression therapy, manual lymphatic drainage, exercise, and skin care, symptoms can be controlled and progression can be slowed or stopped. Early intervention provides the best outcomes.

What causes lymphedema in legs specifically?

Lymphedema in the legs is commonly caused by cancer treatments affecting the pelvic or abdominal lymph nodes (such as for gynecological, prostate, or colorectal cancers), surgeries involving lymph node removal in the groin or pelvis, chronic venous insufficiency, obesity, infections, or prolonged immobility. It can also result from primary (congenital) lymphatic system abnormalities.

Is lymphedema painful?

Lymphedema itself is not typically severely painful, though many people experience aching, heaviness, tightness, or discomfort in the affected limb. The sensations are often described as annoying or uncomfortable rather than sharp or severe. However, complications like infections can be painful, and advanced lymphedema may cause significant discomfort.

How is lymphedema different from regular swelling?

Unlike temporary swelling from injury or fluid retention that resolves with elevation and rest, lymphedema is persistent and progressive. It typically affects one limb more than the other, creates a heavy or tight sensation, may be accompanied by skin texture changes, and doesn’t fully resolve with elevation alone. The swelling in lymphedema is caused by protein-rich lymph fluid accumulation rather than simple water retention.

Who is at highest risk for developing lymphedema?

People at highest risk include those who have had lymph nodes removed or damaged during cancer surgery, those who have received radiation therapy to areas containing lymph nodes, individuals with obesity, people with chronic venous insufficiency, those with a history of cellulitis or lymphatic infections, and individuals with a family history of primary lymphedema.

When should I see a doctor about lymphedema symptoms?

Seek medical attention promptly if you notice any persistent swelling in a limb, feelings of heaviness or tightness, skin changes, or reduced mobility, especially if you have risk factors like previous cancer treatment. Seek immediate medical care if you develop signs of infection including sudden worsening of swelling, redness, warmth, fever, or red streaks on the skin, as infections in lymphedema require urgent treatment.

Can exercise make lymphedema worse?

When done properly, exercise is actually beneficial for lymphedema and is a key component of management. Gentle, progressive exercise helps stimulate lymph flow and maintain muscle function. However, starting too intensely or overexertion can temporarily worsen swelling. It’s important to start gradually, possibly use compression garments during exercise, and work with healthcare providers to develop an appropriate exercise program.

Does lymphedema increase cancer risk?

While lymphedema itself does not cause common cancers, there is a very rare risk of developing lymphangiosarcoma, a cancer of the lymphatic vessels, in limbs with severe, long-standing lymphedema. This complication is extremely rare, occurring in less than 1% of cases, typically only after many years of chronic, untreated lymphedema.

References:

• Mayo Clinic – Lymphedema
• National Cancer Institute – Lymphedema
• Johns Hopkins Medicine – Lymphedema
• NHS – Lymphoedema
• American Cancer Society – Lymphedema
• Cleveland Clinic – Lymphedema