Lymphedema Patient Education

What is primary lymphedema?

Lymphedema refers to swelling that generally occurs in one of your arms or legs. Sometimes both arms or both legs, as well as other body parts (trunk, head and neck, genitals) may be affected by the swelling.

Lymphedema occurs when your lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg. Lymphedema can be either primary or secondary. This means it can occur on its own (primary lymphedema), or it can be caused by another disease or condition (secondary lymphedema). Secondary lymphedema is far more common than primary lymphedema.

What is secondary lymphedema?

Secondary lymphedema results from an identifiable damage leading to disruption or obstruction of normally-functioning lymph vessels and/or lymph nodes and may present in the extremities, trunk, abdomen, head and neck and external genitalia. 

SECONDARY LYMPHEDEMA CAUSES

• Filariasis: caused by a parasite infection, usually only found in 3rd world countries. This is the most common cause of lymphedema in the world.
• Cancer and the treatment of cancer:
  • The tumor itself can cause damage
  • The surgery to remove the tumor or lymph nodes
  • Radiation
  • Chemotherapy
• Trauma
  • Falls, car wrecks
  • Events with significant injuries, especially to the circulatory system.
• Surgery to other areas or for other conditions
• Infections and/or cellulitis
• History of blood clots
• Obesity
• Paralysis, or inability to contract a muscle

SIGNS AND SYMPTOMS OF LYMPHEDEMA

A feeling of heaviness, tension, or aching in the involved area

• A sensation of pins and needles
• Puffiness in the involved area
• Pitting of the skin, or indentations in the skin when pressed by a finger
• Changes in the shape of the involved area
• A feeling of heat in the involved area
• Hardening of the tissue in the involved area
• Loss of motion
• Pain in the involved area
• Leakage of a clear fluid
• Odor
• Frequent wounds or slow healing wounds
• Skin Discoloration, or loss of hair the involved area(not related to chemo)
• Frequent infections

*If you notice any of these symptoms, please let your doctor know. You may benefit from a referral to a lymphedema Therapist

Why is complete decongestive therapy (CDT) considered the gold standard in the treatment of lymphedema, and what are the components of this treatment modality?

Applied correctly by a skilled lymphedema therapist, CDT shows excellent long-term results in both primary and secondary lymphedema. Numerous published studies describe the effectiveness of this non-invasive, safe and reliable treatment approach. In order to reduce the swelling it is necessary to re-route the stagnated lymph fluid - to include excess protein and water molecules - around the blocked area(s) into more centrally located healthy lymph vessels. This goal is achieved by a combination of different treatment modalities, all of which are integral components of CDT, and include Manual Lymph Drainage (MLD), compression therapy,
decongestive and breathing exercises and skin and nail care

What are decongestive and breathing exercises and why are they an important part to manage lymphedema?
The benefits of exercises for those individuals at risk of, or have lymphedema include improved limb flexibility, range of movement, and most importantly increased lymphatic drainage and venous return from the swollen areas, which can result in reduction of limb size and subjective limb symptoms. The positive impact on lymphatic and venous return of muscle and joint activity during exercise, especially while compression garments are worn, and abdominal (diaphragmatic) breathing exercises explain the benefits of a well rounded and tailored exercise regimen for those individuals affected by lymphedema of the extremities.

Why is skin care important for those affected by lymphedema?

Patients who already have, or had lymphedema are susceptible to infections of the skin and nails. Prevention is in the patients' best interest and a great tool to avoid the onset of lymphedema. The skin is the first line of defense against foreign invaders and is usually impermeable to bacteria and other pathogens. However, any defect in the skin such as burns, chafing, dryness, cuticle injury, cracks, cuts, splinters, and insect bites can present an entry site for pathogens or infectious agents and cause infection.

Which lotions and ointments are suitable for skin care in lymphedema?

Ointments, as well as soaps or other skin cleansers used in lymphedema management, should have good moisturizing qualities, contain no fragrances, be hypo-allergenic and should be in either the neutral or acidic range of the pH scale (around pH 5). To identify possible allergic reactions to skin care products, they should be first tested on healthy skin before the initial application to areas affected by lymphedema. Skin care products often used by lymphedema patients include Eucerin, Lymphoderm, or Lindi Skin products.

Why is important exercising with Lymphedema

• Increases lymphatic fluid uptake by the vessels.
• Increases pumping of the lymphatic vessels and nodes.
• Improves joint mobility and motion
• Will strengthen muscles

Do's and Don'ts with exercises with lymphedema:

• Do wear garments/bandages
• Do drink plenty of water
• Do a proper warm up AND cool down
• Do combine Self-MLD to help move fluid
• Do check your body for adverse signs
• Don't push yourself to fatigue, or get overheated
• Don't wear cuff weights or tie an elastic band around your involved wrist/ankles
• Don't lie on your involved extremity for long periods of time

Why is compression therapy in the treatment and management of lymphedema important?

Compression therapy in lymphedema management is provided either via bandages, compression garments or alternative compression devices (depending on the stage of treatment). Compression bandages and garments by themselves will not reduce existing swelling and must therefore not be worn on an untreated, swollen extremity. Individuals affected by lymphedema graduate from padded short-stretch bandages, which are applied by the lymphedema therapist in the intensive phase of CDT to elastic compression garments only when the affected extremity is decongested. To assist in the movement of fluids back to the heart, a pressure gradient between the lower (higher pressure) and the upper part (lower pressure) of the extremity is provided with bandages and garments. Even after successful treatment, the body part affected by lymphedema is at permanent risk for re-accumulation of fluid and most individuals affected by lymphedema are aware of the fact that this condition requires life-long care. Without the benefits of external compression successful long-term management of lymphedema would be very difficult and in most cases impossible.

Why is it important to wear compression garments?

Compression therapy applied by padded short-stretch bandages, compression garments, or alternative materials, such as adjustable compression devices, is an integral part of lymphedema management. The goal of compression therapy is to maintain and improve the reduction of the swelling achieved during lymphedema treatments.

What role do short-stretch compression bandages play in the treatment and management of lymphedema?

Compression bandages are used during the decongestive (intensive) phase of CDT. In this sequence of the treatment the volume of the affected limb changes almost on a daily basis, and it is necessary that external compression adapts to these changes. Bandages are much better suited for this task than compression garments (sleeves, stockings), which would have to be re-fitted constantly. Garments are used in the second phase of CDT, when the limb is decongested and volume changes are minimal.

What role do compression garments play in the treatment and management of lymphedema?

The external support provided by compression garments are an essential component of lymphedema management. Without the benefits of compression therapy, the lymphatic fluid removed by successful treatments would re-accumulate, and long-term management of lymphedema would be impossible.

What is the difference between ready-made (off-the-shelf) compression garments and custom-made garments?

Selecting an appropriate compression garment is a challenging task, and many important factors, such as mobility and activity level, age, coverage area, general shape of the limb/body part, compression class, material, appearance, cost, skin sensitivity/integrity, possible presence of arterial diseases and donning/doffing issues need to be considered. Some of these factors play a major role in the process to determine if a custom-made or ready-made compression garment would be the better choice for the individual.

Why do some patients need a custom-made compression garment?

Although ready-made garments are available in a wide variety of sizes from most manufacturers, they are generally made for a limb of average proportion and length. Although some ready-made garments allow for an extra-wide calf/elbow and thigh/upper arm, a patient with a distorted or disproportionate limb will generally require a custom-made garment. Even if the individual circumferential measurements fall within the range of a specific ready-made garment size, some patients may have a disproportionate large calf, with measurements at the top end of the range and a relatively thin ankle with measurements on the low end of the range. The result would be a looser fit around the ankle area, which could result in a "ballooning" effect with fluid accumulating in the ankle area.

Can I order custom-made compression garments from you?

Yes, your therapist can help you with taking your measurements, and filling out  measurements forms with all the specific data to the garment provider and process your custom garment and class.

What are compression classes?

The level of compression within the different classes is determined by the value of pressure the garments produce on the skin; these pressure values are measured in units of millimeters of mercury (mmHg). For a compression garment to work effectively, the pressure needs to gradually decrease from the most distant part of an extremity (ankle, wrist) to the nearest part (shoulder, hip). This gradient is necessary to avoid tourniquet effects and subsequent obstruction of lymph flow.

Compression class: The level of compression within the different classes is determined by the value of pressure the garments produce on the skin. The correct class of compression is determined by your therapist and/or physician. Typically, compression classes I and II are suitable for lymphedema of the arm, classes I-III (and IV for custom garments) are suitable for the leg. The compression class can be chosen in the drop down menu attached to each of the products

How are short-stretch bandages washed?

Bandages can be hand or machine washed. Compression bandages (and compression garments - see below) used in the management of lymphedema should be properly washed on a regular basis, so skin cells and oils won't become trapped in the fibers of the bandages and damage the integrity of the textile. Compression bandages may be machine or hand washed; machine wash is generally the preferred method. Once the bandages go through the spin cycle they are easy to hang and will dry much faster. Daily washing is recommended, especially if lotions or creams are being used. If the bandages are machine washed it is recommended to place the unrolled bandages in a mesh laundry bag in order to protect the fabric during the washing cycle (the gentle cycle should be utilized).

Bandages are best washed in warm water (between 108 - 140oF); if the bandages are very dirty, they may be boil-washed up to 203oF.

How are compression garments washed?

Sleeves and stockings are generally worn from first thing in the morning until night time, and although compression stockings are constructed of strong elastic and durable materials, they stretch out after about twelve hours of wearing. This is especially true in regions of increased stretch (knee, elbow) where garments wear out more than in other areas, which may result in pooling of edema fluid in those areas. Daily washing of compression garments helps them to restore and retain their elastic properties as well as removes perspiration, oils, dirt, bacteria and dead skin that accumulate inside the garment from normal wear. Frequent washing does not harm compression garments if done properly. However, the garments can be damaged easily, and its compressive qualities may be lost with even one tough rinse cycle, the wrong dryer setting or using the wrong cleaning agents.

What are "compression alternatives" for lymphedema?

In addition to traditional compression garments and bandages, there are a number of compression devices and products available. These products are used for nighttime compression instead of padded short-stretch bandages or for those cases when traditional compression can't be used. Most of these products offer Velcro closing systems, which can be easily adjusted by the patient.

What are the differences between lipedema and lymphedema?

Lipedema is a chronically progressive, symmetrical accumulation of fat in the subcutaneous tissue occurring almost exclusively in women. Primarily the lower extremities are affected, but lipedema may occur in combination with the upper extremities as well. Lipedema is characterized by symmetric enlargement of the limbs, combined with tenderness and easy bruising.
Lymphedema is caused by developmental abnormalities of the lymphatic system (primary lymphedema), or damage to the lymphatic system such as the removal or radiation of lymph nodes in cancer surgery, or infection of the lymphatic system (secondary lymphedema). Lymphedema can present in the extremities, head and neck, trunk, or external genitalia.

What is Chronic Venous Insufficiency (CVI)?
Chronic venous insufficiency develops most commonly as a result of blot clots in the deeper veins of the legs. This condition, known as deep venous thrombosis (DVT), results in changes in the fluid dynamics in the veins and causes the pressure in the veins to increase and the system of valves to become insufficient. The problems associated with CVI do not disappear without treatment and the complexity of treatment increases as the disease progresses. Untreated CVI can lead to serious complications, to include lymphedema, and early diagnosis and treatment is of utmost importance.

Why infections are frequent in a body part affected by lymphedema and how are they treated?

There are numerous reasons why patients with lymphedema are at an increased risk for infections. The skin in lymphedema tends to be dry and scaly, causing a disruption of the protective acid layer, or if deepened skin folds are present, moisture collecting in these folds may create a breeding ground for bacteria.

Other than appropriate treatment for lymphedema, what can I do to avoid increased swelling or infection in my affected body part?
Certain activities may trigger the onset of lymphedema, or may exacerbate the symptoms of existing lymphedema. Individuals affected by lymphedema and those at risk for developing it (everyone who has undergone lymph node excision and/or radiation treatments) should perform appropriate skin care, avoid any tight clothing or jewelry, make sure the compression garment and compression class are the right size, just to name a few of the necessary precautions.

What is the difference between daytime and night compression?

Many patients affected by lymphedema benefit from nighttime compression, especially if the swelling tends to increase at night, the swelling tends to fluctuate, or if you have persistent skin thickening associated with your swelling. Most compression garments worn during the day are not appropriate to wear at night when you sleep. The amount of compression needed to overcome gravitational forces during the day would be too high at nighttime and could cause a tourniquet effect; in addition, compression sleeves and garments are prone to slipping at night. Nighttime compression can be applied by padded short-stretch bandages, or alternative non-elastic compression materials.

I plan to travel - are there any precautions I should consider for my lymphedema?

While traveling with lymphedema does have some drawbacks and requires more planning, it should not stop you from taking a trip. However, getting to your destination may require hours of sitting, which causes a considerable slow down in the venous and lymphatic circulation, and fluid to pool in the extremities. In order to avoid the onset of swelling and to prevent the worsening of pre-existing lymphedema, it is recommended to wear a compression garment during travel. In some cases it may even be necessary to apply additional bandage(s) on top of a compression garment. Compression increases tissue pressure and considerably aids in the prevention of fluid accumulation in the tissues.

Is there a special diet for lymphedema?

An accepted nutritional approach in the management of lymphedema is to follow a balanced diet, which in addition to physical activity and exercises promotes weight loss. Excessive weight contributes to greater demands on the lymphatic systems ability to drain fluid from the tissues; weight control therefore positively affects lymphedema.

What food should I avoid if I have lymphedema?

Here's a list of food and drinks that you may want to avoid consuming to prevent aggravating existing lymphedema:

• Grain products that contain gluten such as bread and cereals
• Processed food including canned goods, cured meats, and fast food
• Sugary food, drinks, and sweeteners including energy bars, high-fructose syrup, artificial sweeteners, sodas, soft drinks, tea-based drinks, coffee, and energy drinks
• Liquors and beers
• Fried food such as fries and chips
• Soy-based products like soy milk

Can I apply for disability because of my lymphedema?

Individuals with severely disabling lymphedema may be able to qualify for benefits if they can meet the blue book criteria under a separate listing.

How does self-manual lymph drainage work and why is it important?

Complete decongestive therapy (CDT) is performed in two phases; in the first phase treatments are administered by trained lymphedema therapists on a daily basis until the affected body part is decongested. The duration of the intensive phase varies with the severity of the condition and averages two-three weeks for patients with lymphedema. However, in extreme cases the decongestive phase may last longer and may have to be repeated several times. Phase two is an ongoing and individualized part of CDT, in which the patient assumes responsibility for maintaining and improving the treatment results achieved in the intensive phase (phase one). During the intensive phase patients are instructed by the therapist in the individual components of self-management, which include self-manual lymph drainage (self MLD, or simple MLD).

My doctor prescribed diuretics for my lymphedema. Is this medication helpful?
Diuretics promote excess fluid in the body to be excreted. Although diuretics may be beneficial in the short-term, and may be indicated in those cases when lymphedema is associated with systemic conditions (ascites, hydrothorax, protein-loosing enteropathy), they may be harmful and contribute to the worsening of lymphedema-related symptoms if used long-term.

How do I find a certified lymphedema therapist in my area?
Complete Decongestive Therapy (CDT) is performed by certified lymphedema therapists. Several schools in the United States offer specialized training and certification to physical therapists, occupational therapists, physicians, chiropractors, nurses, and massage therapists.
Therapists attending these courses receive a minimum of 135 hours of specific lymphedema training in order to learn the necessary skills to effectively treat lymphedema. 

The therapist will have CLT (certified lymphedema therapist), or optional CLT-LANA (certified lymphedema therapist with Lymphology Association of North America certification, listed with the credentials. You can find therapists  in the website of Academy Of Lymphatic Studies or Lana too.

Source courtesy of Academy Of Lymphatic Studies (ACOLS)