Lymphedema

This month's blog post is centered around lymphedema.

March 6th is World Lymphedema Day. This is the day that we as healthcare providers, patients living with the lymphedema, and any advocate helps to spread awareness for this condition all around the world. Visit https://lymphaticnetwork.org/wld/ for more information.

Let's start with what is lymphedema?

Lymphedema is an abnormal accumulation of protein-rich fluid in the tissue which can result in the swelling of a body part.

There are two types of lymphedema; primary and secondary. Primary lymphedema occurs from birth or can develop later in life due to a dysfunction of the lymphatic system. Secondary lymphedema occurs when there is damage to the lymphatic system; trauma, radiation, or surgery. When a person with cancer develops lymphedema this is called secondary lymphedema.

What are the signs and symptoms of lymphedema?

Lymphedema usually develops slowly over time. This means that the earliest signs are not usually detectable to the naked eye. A person will usually feel a difference in his or her limb before swelling actually occurs. Changes that a person may feel are; heaviness, achiness, tightness, and fullness. This would be considered stage 1 lymphedema. As swelling starts to occur, sleeves or pant legs may feel tighter on one side, rings and/or shoes may feel like a person has gained weight on only 1 limb. As a person starts to see swelling, it will manifest usually at the end of the day and go away overnight. As swelling intensifies, the swelling does not go away, elevation helps but it does not completely resolve the swelling, this is stage 2 lymphedema. Stage 3 lymphedema is characterized by changes in the skin, such as; skin hardening (fibrosis), nail changes, and cellulitis infections will occur more often.

Swelling will only occur in the area of lymph node removal or lymph system damage. For example, if a person has radiation to his or her neck as a result of esophageal cancer, swelling will only be present in the neck or facial region.

If a person has radiation to the lymph nodes in their groin or pelvis due to endometrial or colorectal cancer, they will have swelling in the leg or genital region.

What is the treatment for lymphedema?

Unfortunately, there is no cure for lymphedema, this is a lifelong condition. It is important to know the signs and get treatment early.

Physical, Occupational, and Massage Therapists who are trained in complete decongestive therapy (CDT) called certified lymphedema therapists (CLT's) are qualified to treat this condition. You can find a CLT in your area by visiting, https://www.clt-lana.org/search/therapists/. At Be Strong Therapy, we have TWO CLT's on staff.

CDT combines four components:

1. Compression - wraps to decrease swelling and a sleeve/stocking to prevent return of fluid

2. Skin care - cleansing and lotioning the skin daily prevents infection and skin dryness

3. Manual lymph drainage - a type of massage focused on stretching the skin to assist with lymph movement

4. Exercise - muscle movement helps to pump lymph fluid out of the swollen area

I would add a 5th component, self care! Taking care of your body and living a healthy lifestyle will help manage your lymphedema and make the other four items successful.

Each of these items could be their own blog post, but it's important to know that all components are essential to improving lymphedema. There are two phases of treatment in which all areas of CDT are put to use.

Phase 1 (or the intensive phase) of treatment starts by getting an evaluation done by one of our therapists. You and your therapist will determine the best treatment course for you based on your goals and lifestyle. You will then come to therapy to see your CLT regularly to improve your swelling and learn the essential tools for taking care of your lymphedema.

Phase 2 (maintenance phase) of treatment begins when your therapist determines that you have reached your maximum reduction of fluid. Sometimes coming to therapy in this stage of treatment is necessary and sometimes you are discharged from therapy. Either way, in this phase you are working hard to maintain the size of the limb that you achieved during phase 1 of treatment.

Raising awareness

Please continue to raise awareness for lymphedema by; educating others on what lymphedema is, the importance of early treatment, and joining the lymphedema treatment act. Despite the number of people in America with this condition, 3-5 million!, it is vastly under-diagnosed. Most medical providers are unaware of the early signs and how important early treatment is. Medicare and other insurance companies do not pay for the necessary compression, despite patients needing to replace these materials every 6 months for a lifetime! The lymphedema treatment act is a federal bill that has been passed in the house and is now in the senate. You can go to their website lymphedematreatmentact.org to learn how to advocate!

Join a support group

The lymphatic research and disease network (LE&RN) has a list of support groups in your area. We will be hosting our 1st support group here at Be Strong Therapy Services on April 1st @6pm! We hope to see you there!