What Is Lymphedema?

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Most of the functions of the human body come down to basic plumbing. Your heart, kidneys, and liver are no exception. All of these organs work to move or filter fluids in the body. Not every fluid is controlled by a pumping organ, though, as there is fluid that lies between tissues, too.

The fluid that flows through and between most tissues in the body is called lymph. It's made up mostly of chyle, which is an intestinal fluid containing proteins and fats, and white blood cells called lymphocytes.

Lymph fluid collects from tissue spaces around the body, moving through at least one of your roughly 600 lymph nodes. The lymph nodes filter out potentially harmful or infectious particles from the lymph fluid, moving about 4 liters of this fluid around your body every day.

The lymphatic system is generally pretty effective at moving fluid around the body and maintaining a balance. But when the flow of this fluid is interrupted and builds up, it can cause a painful type of swelling called lymphedema that usually occurs in the arms or legs. This article will explore why some people develop lymphedema and what can be done to treat it.

Lymphedema legs

Angkhan / Getty Images

Types of Lymphedema

Lymphedema is the term used to describe the swelling that occurs when lymph fluid builds up in the tissues of your body. This usually happens because of damage or some type of blockage in the lymph system. There are two main types of lymphedema: primary and secondary.

Primary Lymphedema

Primary lymphedema develops as a rare, inherited condition. It typically appears at one of these stages:

  • Infancy: This is a congenital form of lymphedema also known as Milroy's disease.
  • Puberty, during pregnancy, and before age 35: Lymphedema that develops in these stages of life may be caused by a combination of genetic and environmental factors. It may also be called Meige's disease.
  • After 35: This late-onset form of lymphedema is rare and usually only causes swelling in the legs.

What's in a name?

Primary lymphedema's name might make it seem like this is the main form of this disease, but it is the rarest, affecting about 1 out of every 100,000 people in the United States. The name primary is given to this type of lymphedema because the condition develops on its own and not due to another medical condition or injury.

Secondary Lymphedema

Secondary lymphedema is the most common form of the disease, affecting about 1 in 1,000 Americans. It develops when there is trauma, injury, or another type of damage to the drainage of the lymphatic system. Secondary lymphedema is a common complication from cancer treatments.

Lymphedema Symptoms

Swelling is the main symptom associated with lymphedema, but you may also experience other feelings or sensations because of the strain this swelling can place on your body.

Common symptoms of lymphedema include:

  • Swelling, mostly in the arms or legs
  • Skin that feels tight, hot, hard, or has texture changes
  • Aching or tingling
  • Numbness in the swollen area
  • A heavy feeling in your limbs
  • Loss of mobility or flexibility
  • Changes in how your clothes or jewelry fit without weight gain

Causes

Any condition, injury, or treatment that affects your immune or lymphatic system can lead to a disruption in the flow of your lymph fluid. Some of the common causes linked to the development of secondary lymphedema are:

Diagnosis

A diagnosis of lymphedema is usually made from a review of your medical history and a physical examination. For the physical examination, your doctor may take measurements and inspect the skin on the affected limb or body area.

Your healthcare provider may also look for something called the Stemmer sign. If they attempt to pinch a bit of tissue on the back of your hand or the top of your foot and cannot, this is a positive Stemmer sign. A positive Stemmer sign is usually consistent with a lymphedema diagnosis.

Your medical history and details about any recent injuries or infections is also an important part of the diagnosis. If you've had an injury, cancer, or other events that put you at a higher risk of developing lymphedema, a diagnosis may be easier to make.

If there is doubt as to what is causing your swelling, your doctor may perform additional tests.

The primary test for lymphedema is called perometry. This is a computer-based test that helps to measure fluid volumes and displacement inside your body. Other tests that can help narrow the cause of swelling include tonometry to measure pressure or imaging studies like computed tomography (CT).

There are also a number of more detailed studies that are generally reserved for chronic, severe, or late stage lymphedema. These include:

  • Bioimpedence spectroscopy (BIS)
  • Lymphoscintigraphy
  • Near Infra-Red Fluorescence Imaging (NIRF)
  • Lymphography
  • Magnetic resonance lymphangiography

Treatment

There are both surgical and nonsurgical options for treating lymphedema.

Complete decongestive therapy (CDT) is a primary nonsurgical option, and it combines a number of therapies including:

  • Manual lymph drainage
  • Compression therapy
  • Compression devices or garments
  • Skincare
  • Exercise

Good self-care is important to managing lymphedema without surgery, and weight loss or weight management may also be a part of your treatment plan.

Surgical options are usually reserved for cases of lymphedema that have not responded to other, less invasive treatments. The main intent of these surgeries is to clear the lymph system and/or remove sections of tissue affected by lymphedema. Some common surgeries that may be performed to treat lymphedema include:

  • Lymphatic bypass procedure to reroute the drainage of lymph fluid
  • Lymph node transfer to move healthy lymph nodes to areas that have poor drainage
  • Liposuction to remove fat and other tissue from affected areas
  • Debulking to remove larger areas of tissue and put a skin graft in its place

Prognosis

In some cases, lymphedema may be temporary, but for most people affected by this condition, it is a chronic and progressive disease. Early diagnosis and treatment can help keep swelling in check and help you avoid severe swelling or infections.

Lymphedema is not usually life-threatening, but untreated or severe cases of lymphedema can lead to complications like lymphangiosarcoma, a type of soft tissue cancer.

Coping

Living with any chronic disease can be difficult. Living with lymphedema means practicing good self-care and making lifestyle changes to help you avoid complications.

Things you can do to help you maintain control over your lymphedema include:

  • Exercise that is not strenuous
  • Keeping skin clean to avoid infection
  • Treating even minor injuries carefully
  • Avoiding tight clothes, shoes, or jewelry
  • Sitting with good posture and avoid crossing your legs
  • Consider wearing compression garments regularly
  • Eating a healthy diet

Summary

Lymphedema is a chronic disease that can cause swelling that makes your skin painfully tight and may even restrict your movement. Some surgeries can be used for advanced or severe cases, but most treatments for this condition focus on meticulous skincare, avoiding infections, and a healthy diet and exercise regimen.

A Word From Verywell

Living with lymphedema can be frustrating because it can limit your activities and cause discomfort. There is no cure for lymphedema, and this chronic condition requires some significant lifestyle changes and self-care. Talk to your doctor about a management strategy that works for you. With the proper care, lymphedema isn't usually fatal and can be controlled to avoid serious complications.

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