Lymphedema of arm.jpg — Hundreds of millions of people worldwide have lymphedema.

Although lymphedema has a significant financial burden and can lead to difficulty with mobility, getting dressed, swallowing, performing job duties, and sexual health (among other problems), it is still significantly underdiagnosed throughout the world. *Learn what lymphedema is and how i't’s treated in the blog post.*

What is lymphedema?

Lymphedema is swelling due to an abnormal build up of lymphatic fluid (made up of white blood cells, bacteria, cell debris, water, and protein). Lymphatic fluid normally moves throughout the body and gets recirculated via the lymphatic system, but when the system is damaged, lymphatic fluid will start to build up.

Lymphedema is most commonly seen in the arms and legs but can happen anywhere in the body including the head and neck area, breasts, chest, abdomen, and genitals. Unfortunately, there is no cure for lymphedema, so proper management is important so it doesn’t progress.

There are two types of lymphedema:
Primary lymphedema: This is a rare hereditary condition. Swelling occurs due to abnormal development of the lymphatic system from birth, and can occur at any age but commonly starts around the time of puberty.

Secondary lymphedema: Swelling develops after the lymphatic system has been damaged due to surgery, radiation, cancer, or infection.

lymphatic system square.jpg — Think of the lymphatic system like a bunch of highways running throughout the body.

If lymph nodes are removed, the lymphatic system isn’t working correctly, or the lymphatic vessels are damaged, there will be a buildup of “traffic” (lymph fluid). If the lymph fluid is not able to leave that region, then the area will continue to get larger and the condition will progressively worsen.

What are the stages of lymphedema?

Stage 0: This stage is also called latent or sub-clinical swelling. Swelling is not evident but the movement of lymph fluid is altered, for example when lymph nodes are removed. People can be in stage 0 for months or years without any swelling.

Stage 1: Swelling is present and reversible in this stage. Swelling improves with limb elevation and pitting (indentation with gently pressing into the skin) is present. Ideally, lymphedema treatment is started early in stage 1 before it progresses to later stages.

Stage 2: Swelling does not resolve with elevation. Pitting gets more difficult as the tissues start to thicken and get fibrotic.

Stage 3: Severe edema with skin changes including hard, scaly skin. Skin folds are common and wart-like growths can develop on the skin.

Signs and Symptoms of Lymphedema

Swelling in the affected area (arm, leg, breast, abdomen, genitals, head/neck)
Feeling of heaviness or tightness
Aching or discomfort
Decreased range of motion or movement
Thickening of the skin
Pitting edema
Clothes and jewelry are too tight
Difficulty talking or swallowing if you have swelling in the head and neck area
Repeated infections in the swollen area

Who treats lymphedema?

Certified Lymphedema Therapists (CLT) are providers who have completed a training course of at least 135 hours in anatomy and physiology, evaluation, and treatment of lymphedema and related conditions. Some people have a CLT-LANA which indicates that they took a written test after earning their CLT. Although most CLTs are physical therapists and occupational therapists, other medical providers can be trained as well, including physicians, nurses, and massage therapists.

Resources for finding a CLT:

What should I expect at my first visit for lymphedema treatment?

First, a thorough physical exam will be performed. This may include assessing strength, flexibility, joint mobility, reflexes, sensation, posture, and how you walk and move. Your height and weight may also be taken; weight will decrease as the swelling decreases, especially if you have a lot of swelling in your legs.

Then, an in-depth assessment of the swollen area will be performed. This may include assessing the skin condition, pitting edema, and measurements of the affected area (typically with a measuring tape, but your therapist may use a device to detect fluid in stage 0-1). I often take pictures for the medical record to track progress.

Once the assessment is complete, your CLT will review the findings and their recommendations for treatment.

How is lymphedema treated?

Complete Decongestive Therapy (CDT) is the gold standard for treating lymphedema. Stay tuned for the next blog post that goes into detail, but briefly, the four components of CDT include:

Manual lymphatic drainage (MLD): A specialized, gentle, hands-on technique to help promote movement of the lymphatic fluid out of the affected region.
Compression: Use of compression bandaging using multiple layers of bandages to reduce the swelling, then transitioning to a compression garment like a sleeve, bra, or stocking to manage the swelling long-term.
Exercise: Muscle pumping in combination with wearing compression garments can help move fluid out of the affected area.
Skincare/self-care: Includes use of lotion or cream to maintain skin health, which is critical to avoid infection.