What is lymphedema?

Published: Wednesday, August 9, 2023
Amy Henderson
Physical Therapist

Lymphedema is an abnormal accumulation of protein-rich fluid in the interstitium which usually causes chronic inflammation and reactive fibrosis of the affected tissues.

We all have a lymphatic system that is working to remove excess fluid from our circulatory system, which is made up of arteries and veins. When the lymphatic system is damaged, such as with lymph node removal during cancer-related surgeries, this then reduces the lymphatic system’s ability to remove excess fluid from our bodies.

Breast cancer, and other forms of cancer, are the most common cause of secondary lymphedema.

It is estimated that there are between 3-5 million people in the U.S. that have lymphedema.

Lymphedema Signs & Symptoms

  • Generally, it only affects one side OR is worse on one side compared to the other
  • Patients complain of heaviness, achiness or even feelings of numbness
  • Cellulitis, an infection with the skin, is common
  • Progressive disorder (gets worse with time)
  • Patients are not typically aware of swelling in the early stages
    • Swelling can be rapid after an injury in some cases
  • Pitting edema is usually present

Stages of Lymphedema

  • 0 – Latency: There is lymphatic damage, but swelling is not visible.
  • 1 – Reversible: There can be substantial regression of swelling with simply elevating the affected limb.
  • 2 – Spontaneously Irreversible: The ability to reduce swelling with simple elevation is no longer present and becomes worse over time
  • 3 – Lymphostatic Elephantiasis: The most severe stage of lymphedema. There is progressive hardening of tissue, as well as inflammation and other skin/tissue changes. Affected limb does not always have to be excessively large to be classified into Stage 3.

Primary Lymphedema Vs. Secondary Lymphedema

Primary Lymphedema

With primary lymphedema, there is generally an abnormal development of the lymphatic system at the time of birth (too many or too few or even absent lymphatic vessels).This form of lymphedema is hereditary – meaning that it can be passed down through family members. Primary lymphedema is more common in females.

Some characteristics of primary lymphedema include:

  • Incomplete separate of toes (syndactyly)
  • A double or triple row of eyelashes (distichiasis)
  • Yellow nails
  • Vertebral abnormalities
  • Cerebrovascular malformations
  • Hearing loss

Secondary Lymphedema

Secondary lymphedema can be caused by breast cancer, due to removal or radiation of lymph nodes as well as any other cancer that affects lymph nodes. Other causes include, but are not limited to, obesity and chronic venous insufficiency.

Learn More

Living with lymphedema can be challenging, but you’re not alone in this journey. NGMC provides valuable information, support and resources to help you manage and cope with lymphedema more effectively. Recovering from lymphedema requires a comprehensive and personalized approach, and NGMC Rehabilitation is here to guide you every step of the way. To learn more about our rehabilitation services and find our locations visit https://www.nghs.com/rehabilitation-services.