If you ever experience a feeling of heaviness, tightness or aching in your arms or legs, you could have lymphedema.
Lymphedema is swelling caused by an accumulation of lymph, a protein-rich fluid found throughout the body. (Lymph also has white blood cells that help fight infection.) Often the swelling is in the arm or leg, but lymph fluid can also build up in the breasts, trunk, genitals, head or neck. The swelling can range from mild and hardly noticeable to obvious changes in the affected areas.
So what causes lymphedema, and what can you do to prevent it?
We talked to UNC REX lymphedema therapist Valerie Hunsel to learn more.
Your Lymphatic Waste Collector
To understand lymphedema, it’s important to explain how the lymphatic system works. The lymphatic system is made up of lymph vessels, lymph nodes and organs that help the body get rid of waste, toxins and other material such as bacteria and viruses.
“The lymphatic system is like your body’s waste collector,” Hunsel says. “It takes out the waste products through your lymph vessels, which lead to lymph nodes. The lymph nodes then filter out the waste products. Once filtered, the lymph flows in one direction upward toward the neck, where it joins the circulatory system. The heart then pumps the fluid toward the lungs and kidneys to assist with waste removal from the body.”
Lymphedema: The Roadblock
Damage to the lymph system can cause a buildup of lymph, which can prevent the fluid from draining properly. This can lead to swelling.
“I equate it to construction on a freeway. If you have six lanes and two of the lanes are blocked, you still have traffic flowing, but it flows at a much slower pace,” Hunsel says. “That’s what happens when there is damage to the lymphatic vessels or lymph nodes.”
There are two types of lymphedema: primary and secondary. Primary lymphedema is often called hereditary lymphedema, because people are born with an abnormality in the lymphatic system. Symptoms can occur at birth, which is called Milroy’s disease, or later during adolescence or adulthood.
Secondary lymphedema, which is more common in the United States, occurs when the lymphatic system is disrupted. Surgery, cancer treatments, radiation and axillary lymph node dissection, where some lymph nodes are removed as part of treatment or diagnosis, can disrupt the lymphatic system and put a person at risk for secondary lymphedema.
Symptoms of lymphedema include:
- Swelling of the arms, legs or other affected areas
- Full or heavy feeling in the arms, legs or other affected areas
- Tautness, or a tight feeling, in the skin
- Thickening of the skin with or without skin changes
- Feeling of tightness when wearing clothing, shoes, bracelets, watches or rings
- Pitting edema, where an indentation or pit remains after pressing on a swollen area of the body
Stages of Lymphedema
There are four stages of lymphedema.
Something may be going on at the cellular level, but there is no visible swelling at stage 0. People often describe this as a feeling of fullness or tightness in the affected area. “Maybe the roadblock might just be starting to get a little bit congested, but you still don’t have a traffic jam,” Hunsel says. “Some people would say it feels heavy, but they really don’t see swelling.”
People start to see swelling in this stage, but it goes away with elevation. Patients can also see pitting edema. Treatment at this stage or sooner is ideal, Hunsel says, because the effects are still reversible.
The affected area becomes more swollen in stage 2, tissue can be hard and thick (called fibrosis), and elevating the limb doesn’t reverse the condition. “The lymphatic fluid is like Jell-O at room temperature, which solidifies if it sits too long, gets thicker” and is harder to drain, Hunsel says.
Stage 3 is progressive lymphedema, also called elephantiasis. “You get more pronounced tissue changes. It gets thicker and more fibrotic,” Hunsel says. “And it needs more intensive treatment because the limb starts to become more abnormal in size, girth and feeling.”
People with advanced lymphedema are also at increased risk of cellulitis, a serious bacterial skin infection, because waste product is sitting in the tissue instead of being circulated and pushed out of the body.
Hunsel says it’s important to ask your doctor for a referral to a certified lymphedema therapist for treatment. Most insurance plans also require a doctor’s referral for lymphedema services.
“A certified therapist will cater treatment and educate you based on your particular needs. They will make sure you get information on risk reduction practices for lymphedema depending on its stage,” Hunsel says.
Treatment options for lymphedema depend on severity and include:
- Patient education about risk reduction and treatment options.
- Manual lymph drainage, a gentle massage technique that stimulates lymphatic circulation and assists in redirecting the flow away from the disrupted areas.
- Compression therapy using either multilayered compression bandages that help move lymph fluid from the affected areas or compression garments fitted by a compression garment fitter or lymphedema specialist.
- Therapeutic exercise that assists with improving circulation and moving lymph.
- Pneumatic compression therapy that uses a vasopneumatic compression pump, or a garment worn over an affected body part that is connected to a pump that periodically inflates the sleeve, putting pressure on the limb and moving lymph fluid. Your therapist will determine if a pump is right for you, based on your condition.
If you are at risk for lymphedema, Hunsel says the following tips can help prevent it.
Maintain a healthy body weight.
Obesity is a known risk factor for lymphedema, so try to maintain a normal body weight if you are at risk. If you do not know the recommended body weight for your age and height, talk to your doctor.
Take care of your skin.
Moisturize your skin to avoid cracks, limit sun exposure and wear sunblock with SPF 30 or higher to prevent sunburn.
Pay attention to temperature.
Avoid prolonged exposure to extreme heat or cold. Heat can increase swelling, so use caution with saunas and hot tubs.
Keep your nails clean.
Be careful when getting a manicure. Use clean instruments, and don’t have your cuticles cut.
Watch for infections.
Know the signs and symptoms of cellulitis, which may include redness, warmth, pain, increased swelling, fever and flu-like symptoms. Contact your doctor immediately if you experience any of these signs.
Avoid trauma to the affected area.
If you have scratches, punctures or breaks in the skin near an at-risk part of your body, wash with soap and water, pat dry and use a topical antibacterial ointment. You should also avoid having blood drawn, IVs placed or blood pressure cuff readings done on the affected area.
Avoid excessive constriction, or squeezing, on the at-risk body part. For example, don’t wear a compression sleeve garment that is too tight on arm lymphedema, tight bras on breast lymphedema or tight shoes on leg lymphedema.
Be careful with air travel.
Ask for air travel recommendations from a lymphedema specialist. Some people at risk for lymphedema use a prophylactic compression garment. Also try to stand, stretch and walk during long flights to increase circulation.
Talk to your doctor if you notice that any part of your body has increased in size.
Although these tips can help prevent the condition, talk to your doctor if you do experience symptoms of lymphedema. “We can’t cure lymphedema, but we can offer management options to maintain it just like you would maintain for conditions like diabetes or hypertension,” Hunsel says.
Make an appointment with your doctor if you notice persistent swelling in one area of your body. If you need a doctor, find one near you.