What Is Lymphedema?


What is Lymphedema?

Lymphedema occurs when there is trauma or blockage of the lymph nodes, making it difficult for lymphatic fluid to drain properly, therefore; you have chronic swelling as you see in my picture.

What causes Lymphedema?

There are numerous causes of lymphedema, such as genetics, parasitic infection, damage or injury, surgery, tumors, radiation therapy, and skin infections. The most common cause is breast cancer. Women tend to develop lymphedema in their arms after treatment.

Is there a cure for Lymphedema?

Unfortunately, no there isn’t. However, there are many treatment options to help manage it, such as compression garments and pumps, manual lymph drainage massages (MLD), water therapy and low impact exercises. As you can see with my Lymphedema, it can be progressive and lead to other complications, so it’s VERY IMPORTANT to manage it.

What is the Lymphatic system and why do I need to understand it?

Our lymphatic system is responsible for collecting and removing waste products that are left behind in our tissues, such as fluid and debris, pathogens, and cancer cells. It is a clear, protein-rich fluid that carries the waste hence, called lymph, and it contains plasma and lymphocytes (white blood cells), which fight infections and the growth of tumors.The lymphatic system is our second circulatory system

How does it work?

There are smooth muscle cells that make up the interior lining of the lymphatic vessels, and they are the “pulse” that function to move lymph through our bodies.  This pulsing is far less powerful in its magnitude compared to the heart muscle which pumps blood through the circulatory system, but that lining of smooth muscle cells creates the pulse for lymphatics and is activated by the amount of fluid that might build up in each section of lymph vessel between the lymph valves….so when the lymph vessel is stretched by a quantity of lymph fluid, that triggers the smooth muscle inside the vessel to push that quantity of fluid forward and out of that section of lymph vessel into the next, to move it forward and back into the central circulation.

All of this is also assisted by the movement of our skeletal muscles, (ie quadriceps, hamstrings, etc), that are in the vicinity of our lymphatic vessels.  Especially if we are exercising with our short stretch bandages on! It is also assisted in its pulsating contractions by deep abdominal breathing.

In LE, the chronically stretched lymphatic vessel stops pulsing effectively and for numerous reasons the vessels leak….ie damaged lymphatic system after radiation or surgery,  or congenital issues with lymphatics such as you have experienced….so the smooth muscle lining does not work right and cannot effectively work therefore; becomes stagnant.  Once this happens, all the issues of tissues changes and inflammation/infection occur when the swelling in the different regions of the body is not able to be well controlled.

Primary Lymphedema

Primary Lymphedema is caused by malformations of the lymphatic system, either through hereditary or congenital influences, and can either be present at birth or expressed later in life, such as during puberty or pregnancy. It is most common in the legs, but may also occur in the arms or torso. The National Institutes of Health (NIH) states that the incidence of primary lymphedema could be as high as 1 in 300 live births[A1] .

Secondary Lymphedema

Secondary Lymphedema results from damage to the lymphatic system through traumatic injuries, surgical procedures, infections and etc. The World Health Organization estimates that over 150 million people worldwide have secondary lymphedema[A2] .

Stages of Lymphedema

Lymphedema is a chronic condition, and so a staging system established by the International Society of Lymphology (ISL) is used for identifying the progression and severity of the condition[A3] . It is based on details about the amount of swelling and the condition of the tissues and skin. When the lymphedema is identified by stage, it makes it easier for a doctor or lymphedema therapist to accurately diagnose and prescribe treatment to improve, control, and monitor the patient’s swelling effectively.

Stage 0

Stage 0 is the “preclinical” stage when there is a risk of developing lymphedema but no signs of swelling just yet. It can be assessed through an MRI,lymphoscintigraphy, or bioimpedance (a non-invasive method of assessing the composition of body tissues). At this stage, it’s possible to prevent the lymphedema from developing further with immediate treatment.

Stage I

Stage I is when the affected limb is swollen and feels heavy. When you press down on the swollen area, it leaves a “pit” (indention). The symptoms worsen during the day, but can resolve with elevation. THIS IS ONLY TEMPORARY. Prompt treatment at this stage can help control and manage the condition, in some cases it can prevent it from becoming a stage II.

Stage II

Stage II occurs when pitting edema has progressed and changes in the tissues have begun. The limb is swollen but feels spongy, and, if fibrosis has developed, the limb will feel hard. The tissue changes happening at this stage increase the risks of even greater swelling, fibrosis, infections, and skin problems; elevation won’t reduce swelling, but intense treatment can usually improve Stage II lymphedema.

Stage III

Stage III is the most advanced stage, and is also known as lymphostatic elephantiasis. The tissue has become extremely swollen and thickened, and infections are more common due to increased risks of skin breaks. A number of changes to the skin may occur, including changes in elasticity, color, and thickness.

What is Lipedema?

Lipedema is fat that is being distributed in an irregular way right underneath your skin. If the condition goes without being treated, it can eventually cause severe pain and other problems. Lipedema is commonly mistaken as obesity.

What are the symptoms of Lipedema?

The typical symptoms are a large lower half and column-like legs, which are often tender and bruise easily. For example, the top half of your body may be a size 7, but the bottom half may be a size 14. As the condition progresses, fat continues to build up, and your lower body grows heavier. You can develop lipedema in your arms as well.

Over time, fat cells block the vessels of your lymphatic system. This blockage prevents the proper drainage of lymph fluid, causing lymphedema. If not treated, this can lead to infections, wounds, fibrotic “scar-like” tissue and hardening of the skin.

Causes of Lipedema

The cause is not known, but doctors suspect female hormones play a role. That’s because the condition affects mostly women, and it often begins or worsens at puberty, during pregnancy, following gynecologic surgery, and around the time of menopause.

Lipedema Treatments

Manual lymphatic drainage. The same form of massage as we use for lymphedema treatment. Gentle, rhythmic pumping movements to stimulate the flow of lymph around blocked areas to healthy vessels, so it can drain into the venous system.

Compression. The use of stretch bandages or custom-fitted compression, or even spandex shorts. This helps prevent the fluid to build back up.

Liposuction, water-assisted liposuction  and tumescent liposuction, can remove the lipedema fat. The procedure uses a hollow tube that is placed under the skin to suction the fat tissue. Several sessions may be needed depending on the amount of abnormal fat.

Living with Lymphedema, what’s next?

I remember trying to find a lymphedema therapist. The process was difficult to say the least. So, how do you find a lymphatic therapist that is “qualified”?

According to LANA  and NLN, the minimum requirements for Lymphedema therapist are at least 135 hours of lymphatic training beyond their certification as an occupational therapist or a physical therapist. Massage therapist, doctors and nurses can also become LANA certified lymphatic therapists as well. Each therapist should spend one-third of these training hours learning how the lymphatic system works, the other two-thirds in a lab and hands-on patients. They need to learn how to move the lymph fluid. A “qualified” therapist must have at least one year of experience treating lymphedema patients, recertification every six years and continuous education courses.

There are several online resources and organizations available at our fingertips.

Yay! You’ve found a therapist!

Evaluation time! Your therapist should be able to tell you about your stage of lymphedema during your evaluation. Your treatment needs will be determined by this as well as your medical history, physical exam, and of course measurements of your limb.

** I was very surprised to see that my left leg was swelling due to “spillage”. I wasn’t aware of any other swelling in my body until the measurements were taken.

Questions to ask your therapist:

  1. How many hours of lymphedema training do they have and from where did they receive their training from?
  2. Do they take continuing education courses?
  3. Are they aware of the standards for therapist training established by the Lymphology Association of North America (LANA), and do you meet those standards.
  4. How lymphedema patients do they see?
  5. They should discuss your treatment plan and goals, and show you how it compares to the National Lymphedema Network’s position paper on Treatment?
  6. How will they help you with getting Durable Medical Equipment (sleeves, gloves, compression bras, night garments and fitting)?
  7. How often will my visits be scheduled?

What does therapy consist of?

Lymphedema treatment consists of Complete Decongestive Therapy-CDT.

Manual Lymph Drainage

Manual Lymph Drainage (a light massage) along with compression bandaging. In the beginning of your therapy, your therapist will do this. It is important to learn how to bandage and do MLD yourself to ensure a successful reduction.

Bandaging or Wrapping

Bandaging or wrapping is one of the most effective forms of compression for patients because of the low pressure exerted when muscles are relaxed or active. When the muscles pumps during activity, the bandages provide additional resistance.

Compression Garments

Compression garments are a MUST for fluid reduction. Your therapist will tell you when it is time for a compression garment. You want your fluid reduction to be at a point where you can maintain your lymphedema. It is important to go back to your therapist once you receive your garments to ensure they fit correctly.


Exercising promotes lymph drainage and reduces swelling. It also helps keep a full range of movement. Deep breathing before exercising helps clear your lymphatic system in your chest. This helps by changing the pressure in your chest and abdomen, which helps the lymph to flow back into your blood.

Pumps or Intermittent Pneumatic Compression

Kinesio Tape