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Lymphedema 101

Updated: Mar 2, 2023

Did you know ... up to 10 Million Americans suffer from lymphedema and lymphatic disease.

What is lymphedema?

Lymphedema is swelling due to an abnormal build up of protein-rich lymphatic fluid (consisting of white blood cells, bacteria, cell debris, water, and protein). Lymphatic fluid normally moves throughout the body and gets recirculated via the lymphatic system but when the system is damaged or malformed the lymphatic fluid will start to build up and cause the affected area(s) to swell.

Lymphedema is most commonly seen in the arms and legs but can happen anywhere in the body including the head and neck area, breasts, chest, abdomen, and genitals. Unfortunately, there is no cure for lymphedema, so proper management is important so it doesn’t progress.

There are two types of lymphedema: Primary lymphedema: Swelling occurs due to abnormal formation of the lymphatic system from birth and can occur at any age (most commonly in the teenage years). It is a rare hereditary condition.

Secondary lymphedema: When swelling develops after the lymphatic system has been compromised or damaged due to: surgery, radiation, cancer, or an infection.

Stages of lymphedema?

Stage 0: This stage is also called latent or sub-clinical swelling. Swelling is not evident but the movement of lymph fluid is altered, for example when lymph nodes are removed. People can be in stage 0 for months or years without any swelling.

Stage 1: Swelling is present and reversible in this stage. Swelling improves with limb elevation and pitting (indentation with gently pressing into the skin) is present.

Ideally - this stage is considered the best time to begin lymphedema treatment before it progresses to later stages.

Stage 2: Swelling does not resolve with elevation. Pitting gets more difficult as the tissues start to thicken and get fibrotic.

Stage 3: Severe edema with skin changes including hard, scaly skin. Skin folds are common and wart-like growths can develop on the skin.

Who is at Risk?

· Anyone who has undergone a mastectomy or lumpectomy with removal of lymph nodes

· Anyone who has had a prostatectomy

· Anyone who has received radiation therapy in areas close to the lymph nodes

· Those who are obese

· Anyone who has had surgery or cancer with involvement of the lymph nodes

· Those with prolonged immobility of arms or legs

· Anyone with crush or high impact injuries

· Anyone who has an infection of the affected limb

What to look for!

Signs and symptoms of lymphedema may include:

  • Swelling in the affected area (arm, leg, breast, abdomen, genitals, head/neck)

  • Feeling of heaviness or tightness

  • Aching or discomfort

  • Decreased range of motion or movement

  • Thickening of the skin

  • Pitting edema

  • Clothes and jewelry are too tight

  • Difficulty talking or swallowing if you have swelling in the head and neck area

  • Repeated infections in the swollen area

When Should I Seek Treatment?

Seek treatment if you exhibit any of the above signs and symptoms. As any condition, it is best to treat as early as possible, ideally seeking treatment in phase 1. Ask your physician for a referral for a Certified Lymphedema Therapist (CLT) or CLT-LANA for evaluation and treatment.

How to Treat Lymphedema?

Working with a Certified Lymphedema Therapist (CLT) is a provider who has completed a training course of 135+ hours in anatomy and physiology, evaluation, and treatment of lymphedema and related conditions. Some people have a CLT-LANA, this indicates that they took a written test after earning their CLT. A majority of CLTs are physical and occupational therapists, however a small percentage of other medical providers can be trained as well, such as physicians, nurses, and massage therapists.

Resources for locating a CLT near you:

A Certified Lymphedema Therapists will provide individualized & comprehensive evaluations and treatment to optimize your function and comfort. A typical program includes complete decongestive therapy, which is as described below:

· Manual lymphatic drainage (MLD) A specialized hands-on technique used to mobilize fluid

· Compression

Multi-layer compression bandages Low stretch bandages are applied to the involved limb to assist in mobilizing fluid, supporting the skin’s elasticity and reducing limb size.

Compression garments A transition into the maintenance phase (long term management) of your care after reaching maximal decongestion using the multi-layer compression bandage technique (intensive phase). Compression garments a can include: sleeves, bras, stocking etc.

· Therapeutic exercises Specific exercises are performed while wearing the bandages to enhance lymphatic flow and reduce swelling.

· Skin care Training is provided on how to properly clean and care for your skin. This portion is critical to aid with avoiding infection.

· Patient/caregiver education and training

Preventive and Maintenance Activities if diagnosed with lymphedema

If you show any of the signs and symptoms of lymphedema or have been diagnosed, you should:

· Avoid additional medical procedures on the affected side, such as blood draws, injections and blood pressure measurements.

· Wear long sleeves and long pants as well as gloves and shoes outdoors.

· Do not wear tight-fitting clothing or jewelry.

· Wear gloves and protective finger coverings when washing dishes, using strong detergents or gardening.

· Avoid lifting or moving heavy objects. Carry groceries in small loads.

· Inspect the skin daily for signs of warmth, redness, or sudden increase in swelling or pain.

· Clean and apply antibiotic cream to any cuts or open areas of skin.

· Apply moisturizer daily.

· Avoid sitting for long periods of time.

· Move the involved arm or leg every one to two hours.

· Use an electric razor to avoid cuts in the affected area.

*Check out the National Lymphedema Network for more details on risk reduction practices

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