Lymphedema Screening Test
Lymphedema FAQs

*Barb from Granville, Illinois, suffered from Lymphedema for almost 25 years before getting a correct diagnosis.  Her feet hurt terribly, and her ankles would swell so badly she got blisters – the fluid build up had nowhere else to go but out. 

She would tape her ankles in the morning to avoid getting the blisters by the end of the day.  In the 25 years she suffered without a correct diagnosis, she was incorrectly given nitroglycerin, coumadin and other medications to treat conditions she didn’t even have. 

Then she developed Restless Leg Syndrome, a condition which doctors told her she probably got as a result of her untreated Lymphedema. 

An estimated 5 million people in the United States are afflicted with this condition, yet it continues to go undiagnosed, untreated and mistreated. 

Even with all the medical advances we have made through the years, treatment for this condition was not available in the United States until the late 1980’s.  Now, getting a correct diagnosis is still an issue, as it continues to go undiagnosed for millions of children and adults.  

However, once diagnosed, a simple treatment can prevent life threatening infections, disfigurement, loss of mobility, and total disability. 

What Is Lymphedema?

Very simply, Lymphedema is the abnormal accumulation of lymphatic fluid in the tissues, causing swelling of a limb or body part.  Lymph is a clear fluid filled with infection-fighting cells.  This lymph fluid carries foreign bodies, including impurities, germs and cancer cells, away from internal organs.

Lymphedema Therapy, also called Complete Decongestive Therapy (CDT) can:

  1) Reduce healing time for open wounds on swollen limbs
  2) Reduce swelling following surgery for orthopedic conditions or plastic surgery
  3) Reduce swelling following a trauma including fractures and facial trauma 
  4) Provide education and risk management for prevention of swelling

Before we go any further, I want to let you know that Barb is now doing very well.  She came to me for Complete Decongestive Therapy (CDT) and no longer has pain or blisters.  Her swelling has gone down so much, she can now wear her favorite shoes! 

Lymphedema is much more common than we realize, since it is significantly undiagnosed.  It is most often diagnosed following surgery (such as breast cancer surgery) because there is an obvious "cause and effect."  But people who have Lymphedema without an obvious "cause" often go untreated. 

Treatment for Lymphedema is critically important, since it is a progressive condition and makes the sufferer prone to infections which can affect the entire body. 

Sonnie is a LANA Certified Lymphedema Therapist
and Certified Garment Fitter

One component of Lymphedema Therapy is a custom fitted garment, which helps to maintain the proper compression on the affected limb.  A properly fitted custom made compression garment is also critical to the treatment's success.  In fact, an improperly fitted garment can do more harm than good. 

Every patient is different, which makes garment fitting an art.  It's pretty rare that over-the-counter, generic-sized garments will be the right fit.  And you certainly can't get custom fitted garment at your local super store.   

If a garment is too tight, it can hinder the flow of lymph fluid and circulation.  If it's too loose, it is constantly slipping down and hitting the extremity in the wrong place, potientially causing damage.  A custom fitted garment is, as Goldilocks would say, "just right." 

What Does Lymphedema Look Like?

Lymphedema is often recognized by the appearance of the following symptoms:  

• Swelling
• Thickening or hardening of the skin
• Tight or shiny skin
• Appearance of blisters that leak clear fluid
• In more advanced lymphedema, the skin can become difficult to indent when you press it
• The feeling of tightness or heaviness in the limb (even without the presence of swelling)

What Does Lymphedema Feel Like?

Patients describe Lymphedema in a number of ways:

   • Feeling like you're carrying an extra limb
   • General uncomfortable feeling
   • Heaviness in the affected limb
   • Tightness in the skin
   • Feeling areas of fullness in the affected limb

Patients also say:

• It affects the clothing and shoes you can wear
• It's embarrassing
• It limits what you can do
• You don't do as much as you would normally do