Lymphedema Patient Education

What is Lymphedema?

Lymphedema is swelling that happens when too much lymph fluid collects in your tissues. This usually happens in an arm or leg. The lymph system helps your body fight infections and keeps fluids balanced. When it is blocked or damaged, the fluid builds up and causes swelling.

Causes and Risk Factors

Surgery or radiation that hurts lymph nodes (common in cancer treatments)
Infections that damage lymph vessels
Injury or trauma to lymph nodes or vessels
Being born with a faulty lymph system (rare)
Being very overweight (obesity)
Blood clots blocking lymph flow

Signs and Symptoms

Swelling in the arm, leg, hand, or foot
Feeling heaviness or tightness in the limb
Pain or discomfort in the swollen area
Reduced movement or stiffness
Skin thickening or hardening
Recurring infections in the swollen area

Early Warning Signs

Mild puffiness or swelling in your limb
Tight feeling or heaviness after surgery or injury
Skin feels tight or harder than usual

Complications if Untreated or Not Following Treatment

Swelling gets worse and harder to manage
Skin may become thick and hard
Frequent infections like cellulitis
Loss of movement in the limb
Permanent damage to skin and tissues

Treatment and Self-Care

Compression garments: Special sleeves or stockings help move fluid
Exercise: Gentle movements help lymph flow
Skin care: Keep skin clean and moisturized to avoid infections
Manual lymph drainage: Special massage by trained therapists
Elevation: Raise your limb above heart level when resting
Avoid tight clothes or jewelry on the swollen limb
Maintain a healthy weight

Common Medications

Antibiotics (to treat infections)
Pain relievers (to ease discomfort)

Medication Purpose and Side Effects

Antibiotics: Fight infections; possible side effects include stomach upset or allergic reactions
Pain relievers: Reduce pain; some may cause drowsiness or stomach irritation

Dietary Needs and Lifestyle Changes

Eat lots of fruits, vegetables, and whole grains
Limit salt to help reduce swelling
Drink plenty of water
Keep a healthy weight
Avoid smoking

Safety Considerations

Protect your swollen limb from cuts, burns, and insect bites
Do not have blood pressure taken or get shots in the swollen arm or leg
Watch for signs of infection: redness, warmth, pain, or fever
Call your healthcare provider if infection signs appear

Prevention and Maintenance Tips

Follow your treatment plan closely
Wear compression garments as directed
Keep skin clean and moisturized
Exercise regularly
Monitor your swelling and report changes

When to Call for Help

Call your Home Health Agency or Doctor if:
- Swelling slowly worsens
- You notice redness, warmth, or pain in the limb
- You have mild fever or chills
- You have new pain or limited movement in the limb
Go to the Emergency Room if:
- Swelling suddenly gets much worse
- You have high fever, chills, or feel very sick
- You have severe pain or redness spreading quickly
- You have difficulty breathing or chest pain (signs of a serious infection or blood clot)

PATIENT HOMEWORK/ASSESSMENT

Learning Check: True or False Quiz

Instructions: Read each statement below. Circle “True” if you think the statement is correct. Circle “False” if you think the statement is wrong. For any false statements you choose, please correct them by writing the right information next to the statement.

True / False Lymphedema is caused by too much lymph fluid building up in the body.
True / False Lymphedema only affects the legs.
True / False Surgery and radiation can cause lymphedema.
True / False Swelling and heaviness are signs of lymphedema.
True / False Skin infections are not a concern for people with lymphedema.
True / False Compression garments help reduce swelling in lymphedema.
True / False You should always protect your swollen limb from cuts and insect bites.
True / False Blood pressure should never be taken on the swollen limb.
True / False Exercise can help improve lymph flow.
True / False It is okay to ignore mild swelling after surgery because it will always go away.
True / False Antibiotics are used to treat infections related to lymphedema.
True / False High salt intake can make swelling worse.
True / False Drinking lots of water is bad for lymphedema.
True / False You should wear tight jewelry on your swollen arm to keep it from moving.
True / False Early treatment helps prevent lymphedema complications.
True / False You should call your doctor if your limb becomes red and warm.
True / False Elevating the swollen limb can help reduce swelling.
True / False Skin care is not important for people with lymphedema.
True / False Lymphedema can cause permanent damage if untreated.
True / False You should go to the emergency room if you have sudden, severe swelling and fever.

ASSESSMENT of WELL-BEING INDIVIDUALIZED PATIENT HOMEWORK

Individualizing Learning

To help you learn best about your lymphedema, please think about these questions. Your answers will help your healthcare team teach you what you need to know about your health:

What part of your body is affected by lymphedema?
Have you noticed any changes in swelling or pain recently?
Are you wearing your compression garments as your doctor advised?
What medications do you take for your lymphedema or infections? Do you know their names and how to take them?
Have you had any side effects from your medications?
Do you have any allergies to medicines?
Are you able to do the recommended exercises daily? If not, what makes it hard?
How do you care for your skin on the swollen limb?
Have you had any infections or fever since your diagnosis?
Do you understand when to call your doctor or seek emergency care?
What questions do you have about your lymphedema or treatment plan?