The interactive Lymphedema Wellness Manual is a comprehensive guide to the therapeutic management of secondary lymphedema, packed with information (380 color pages 8.5 x 11″ illustrated softcover includes a separate bound Patient Handbook). From evaluation to treatment to risk reduction, all aspects of secondary lymphedema care for the patient are encompassed. The book centers around evidence-based best practices for lymphedema treatment and incorporates a wealth of resources, including 6 acclaimed Manual Lymph Drainage Topic Cards 2-page reference sheets. The Wellness Manual is intended to help trained clinicians develop individual treatment plans and collaboratively inform their patients’ treatment decisions. Lymphedema patients are able to purchase this book for reference value, but not as a self-treatment guide.
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Tips on reducing the risk of injury or infection to the arm
If you have an infection, injury or any of the symptoms listed above, see your health care provider.
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General Information About Lymphedema
- Lymphedema is the build-up of fluid in soft body tissues when the lymph system is damaged or blocked.
- The lymph system is a network of lymph vessels, tissues, and organs that carry lymph throughout the body.
- Lymphedema occurs when lymph is not able to flow through the body the way that it should.
- There are two types of lymphedema.
- Possible signs of lymphedema include swelling of the arms or legs.
- Cancer and its treatment are risk factors for lymphedema.
- Tests that examine the lymph system are used to diagnose lymphedema.
- Stages may be used to describe lymphedema.
Lymphedema is the build-up of fluid in soft body tissues when the lymph system is damaged or blocked.
Lymphedema occurs when the lymph system is damaged or blocked. Fluid builds up in soft body tissues and causes swelling. It is a common problem that may be caused by cancer and cancer treatment. Lymphedema usually affects an arm or leg, but it can also affect other parts of the body. Lymphedema can cause long-term physical, psychological, and social problems for patients.
The lymph system is a network of lymph vessels, tissues, and organs that carry lymph throughout the body.
The parts of the lymph system that play a direct part in lymphedema include the following:
- Lymph: A clear fluid that contains lymphocytes (white blood cells) that fight infection and the growth of tumors. Lymph also contains plasma, the watery part of the blood that carries the blood cells.
- Lymph vessels: A network of thin tubes that helps lymph flow through the body and returns it to the bloodstream.
- Lymph nodes: Small, bean-shaped structures that filter lymph and store white blood cells that help fight infection and disease. Lymph nodes are located along the network of lymph vessels found throughout the body. Clusters of lymph nodes are found in the underarm, pelvis, neck, abdomen, and groin.
Lymphedema occurs when lymph is not able to flow through the body the way that it should.
When the lymph system is working as it should, lymph flows through the body and is returned to the bloodstream.
- Fluid and plasma leak out of the capillaries (smallest blood vessels) and flow around body tissues so the cells can take up nutrients and oxygen.
- Some of this fluid goes back into the bloodstream. The rest of the fluid enters the lymph system through tiny lymph vessels. These lymph vessels pick up the lymph and move it toward the heart. The lymph is slowly moved through larger and larger lymph vessels and passes through lymph nodes where waste is filtered from the lymph.
- The lymph keeps moving through the lymph system and collects near the neck, then flows into one of two large ducts:
- The right lymph duct collects lymph from the right arm and the right side of the head and chest.
- The left lymph duct collects lymph from both legs, the left arm, and the left side of the head and chest.
- These large ducts empty into veins under the collarbones, which carry the lymph to the heart, where it is returned to the bloodstream.
When part of the lymph system is damaged or blocked, fluid cannot drain from nearby body tissues. Fluid builds up in the tissues and causes swelling.
There are two types of lymphedema.
Lymphedema may be either primary or secondary:
- Primary lymphedema is caused by the abnormal development of the lymph system. Symptoms may occur at birth or later in life.
- Secondary lymphedema is caused by damage to the lymph system. The lymph system may be damaged or blocked by infection, injury, cancer, removal of lymph nodes, radiation to the affected area, or scar tissue from radiation therapy or surgery.
This summary is about secondary lymphedema in adults that is caused by cancer or cancer treatment.
Possible signs of lymphedema include swelling of the arms or legs.
Other conditions may cause the same symptoms. A doctor should be consulted if any of the following problems occur:
- Swelling of an arm or leg, which may include fingers and toes.
- A full or heavy feeling in an arm or leg.
- A tight feeling in the skin.
- Trouble moving a joint in the arm or leg.
- Thickening of the skin, with or without skin changes such as blisters or warts.
- A feeling of tightness when wearing clothing, shoes, bracelets, watches, or rings.
- Itching of the legs or toes.
- A burning feeling in the legs.
- Trouble sleeping.
- Loss of hair.
Daily activities and the ability to work or enjoy hobbies may be affected by lymphedema.
These symptoms may occur very slowly over time or more quickly if there is an infection or injury to the arm or leg.
Cancer and its treatment are risk factors for lymphedema.
Lymphedema can occur after any cancer or treatment that affects the flow of lymph through the lymph nodes, such as removal of lymph nodes. It may develop within days or many years after treatment. Most lymphedema develops within three years of surgery. Risk factors for lymphedema include the following:
- Removal and/or radiation of lymph nodes in the underarm, groin, pelvis, or neck. The risk of lymphedema increases with the number of lymph nodes affected. There is less risk with the removal of only the sentinel lymph node (the first lymph node to receive lymphatic drainage from a tumor).
- Being overweight or obese.
- Slow healing of the skin after surgery.
- A tumor that affects or blocks the left lymph duct or lymph nodes or vessels in the neck, chest, underarm, pelvis, or abdomen.
- Scar tissue in the lymph ducts under the collarbones, caused by surgery or radiation therapy.
Lymphedema often occurs in breast cancer patients who had all or part of their breast removed and axillary(underarm) lymph nodes removed. Lymphedema in the legs may occur after surgery for uterine cancer, prostate cancer, lymphoma, or melanoma. It may also occur with vulvar cancer or ovarian cancer.
Tests that examine the lymph system are used to diagnose lymphedema.
- Physical exam and history: An exam of the body to check general signs of health, including checking for signs of disease, such as lumps or anything else that seems unusual. A history of the patient’s health habits and past illnesses and treatments will also be taken.
- Lymphoscintigraphy: A method used to check the lymph system for disease. A very small amount of a radioactive substance that flows through the lymph ducts and can be taken up by lymph nodes is injected into the body. A scanner or probe is used to follow the movement of this substance. Lymphoscintigraphy is used to find the sentinel lymph node (the first node to receive lymph from a tumor) or to diagnose certain diseases or conditions, such as lymphedema.
- MRI (magnetic resonance imaging): A procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body. This procedure is also called nuclear magnetic resonance imaging (NMRI).
The swollen arm or leg is usually measured and compared to the other arm or leg. Measurements are taken over time to see how well treatment is working.
A grading system is also used to diagnose and describe lymphedema. Grades 1, 2, 3, and 4 are based on size of the affected limb and how severe the signs and symptoms are.
Stages may be used to describe lymphedema.
- Stage I: The limb (arm or leg) is swollen and feels heavy. Pressing on the swollen area leaves a pit (dent). This stage of lymphedema may go away without treatment.
- Stage II: The limb is swollen and feels spongy. A condition called tissue fibrosis may develop and cause the limb to feel hard. Pressing on the swollen area does not leave a pit.
- Stage III: This is the most advanced stage. The swollen limb may be very large. Stage III lymphedema rarely occurs in breast cancer patients. Stage III is also called lymphostatic elephantiasis.
- Patients can take steps to prevent lymphedema or keep it from getting worse.
- Preventive steps include the following:
- Tell your health care provider right away if you notice symptoms of lymphedema.
- Keep skin and nails clean and cared for, to prevent infection.
- Avoid blocking the flow of fluids through the body.
- Keep blood from pooling in the affected limb.
- Studies have shown that carefully controlled exercise is safe for patients with lymphedema.
Patients can take steps to prevent lymphedema or keep it from getting worse.
Taking preventive steps may keep lymphedema from developing. Health care providers can teach patients how to prevent and take care of lymphedema at home. If lymphedema has developed, these steps may keep it from getting worse.
Preventive steps include the following:
Tell your health care provider right away if you notice symptoms of lymphedema.
See the General Information section for symptoms that may be caused by lymphedema. Tell your doctor right away if you have any of these symptoms. The chance of improving the condition is better if treatment begins early. Untreated lymphedema can lead to problems that cannot be reversed.
Keep skin and nails clean and cared for, to prevent infection.
Bacteria can enter the body through a cut, scratch, insect bite, or other skin injury. Fluid that is trapped in body tissuesby lymphedema makes it easy for bacteria to grow and cause infection. Look for signs of infection, such as redness, pain, swelling, heat, fever, or red streaks below the surface of the skin. Call your doctor right away if any of these signs appear. Careful skin and nail care helps prevent infection:
- Use cream or lotion to keep the skin moist.
- Treat small cuts or breaks in the skin with an antibacterial ointment.
- Avoid needle sticks of any type into the limb (arm or leg) with lymphedema. This includes shots or blood tests.
- Use a thimble for sewing.
- Avoid testing bath or cooking water using the limb with lymphedema. There may be less feeling (touch, temperature, pain) in the affected arm or leg, and skin might burn in water that is too hot.
- Wear gloves when gardening and cooking.
- Wear sunscreen and shoes when outdoors.
- Cut toenails straight across. See a podiatrist (foot doctor) as needed to prevent ingrown nails and infections.
- Keep feet clean and dry and wear cotton socks.
Avoid blocking the flow of fluids through the body.
It is important to keep body fluids moving, especially through an affected limb or in areas where lymphedema may develop.
- Do not cross legs while sitting.
- Change sitting position at least every 30 minutes.
- Wear only loose jewelry and clothes without tight bands or elastic.
- Do not carry handbags on the arm with lymphedema.
- Do not use a blood pressure cuff on the arm with lymphedema.
- Do not use elastic bandages or stockings with tight bands.
Keep blood from pooling in the affected limb.
- Keep the limb with lymphedema raised higher than the heart when possible.
- Do not swing the limb quickly in circles or let the limb hang down. This makes blood and fluid collect in the lower part of the arm or leg.
- Do not apply heat to the limb.
Studies have shown that carefully controlled exercise is safe for patients with lymphedema.
Exercise does not increase the chance that lymphedema will develop in patients who are at risk for lymphedema. In the past, these patients were advised to avoid exercising the affected limb. Studies have now shown that slow, carefully controlled exercise is safe and may even help keep lymphedema from developing. Studies have also shown that, in breast-cancer survivors, upper-body exercise does not increase the risk that lymphedema will develop. (See the Exercise section under Treatment of Lymphedema for more information.)
Treatment of Lymphedema
- The goal of treatment is to control the swelling and other problems caused by lymphedema.
- Treatment of lymphedema may include the following:
- Pressure garments
- Skin care
- Combined therapy
- Compression device
- Weight loss
- Laser therapy
- Drug therapy
- Massage therapy
- When lymphedema is severe and does not get better with treatment, other problems may be the cause.
The goal of treatment is to control the swelling and other problems caused by lymphedema.
Damage to the lymph system cannot be repaired. Treatment is given to control the swelling caused by lymphedemaand keep other problems from developing or getting worse. Physical (non-drug) therapies are the standard treatment. Treatment may be a combination of several of the physical methods. The goal of these treatments is to help patients continue with activities of daily living, to decrease pain, and to improve the ability to move and use the limb (arm or leg) with lymphedema. Drugs are not usually used for long-term treatment of lymphedema.
Treatment of lymphedema may include the following:
Pressure garments are made of fabric that puts a controlled amount of pressure on different parts of the arm or leg to help move fluid and keep it from building up. Some patients may need to have these garments custom-made for a correct fit. Wearing a pressure garment during exercise may help prevent more swelling in an affected limb. It is important to use pressure garments during air travel, because lymphedema can become worse at high altitudes. Pressure garments are also called compression sleeves and lymphedema sleeves or stockings.
- Talk with a certified lymphedema therapist before beginning exercise.
Patients who have lymphedema or who are at risk for lymphedema should talk with a certified lymphedema therapist before beginning an exercise routine. (See the Lymphology Association of North America Web site for a list of certified lymphedema therapists in the United States.)
- Wear a pressure garment if lymphedema has developed.
Patients who have lymphedema should wear a well-fitting pressure garment during all exercise that uses the affected limb or body part.
When it is not known for sure if a woman has lymphedema, upper-body exercise without a garment may be more helpful than no exercise at all. Patients who do not have lymphedema do not need to wear a pressure garment during exercise.
- Breast cancer survivors should begin with light upper-body exercise and increase it slowly.
Some studies with breast cancer survivors show that upper-body exercise is safe in women who have lymphedema or who are at risk for lymphedema. Weight-lifting that is slowly increased may keep lymphedema from getting worse. Exercise should start at a very low level, increase slowly over time, and be overseen by the lymphedema therapist. If exercise is stopped for a week or longer, it should be started again at a low level and increased slowly.
If symptoms (such as swelling or heaviness in the limb) change or increase for a week or longer, talk with the lymphedema therapist. It is likely that exercising at a low level and slowly increasing it again over time is better for the affected limb than stopping the exercise completely.
More studies are needed to find out if weight-lifting is safe for cancer survivors with lymphedema in the legs.
Once the lymph fluid is moved out of a swollen limb, bandaging (wrapping) can help prevent the area from refilling with fluid. Bandages also increase the ability of the lymph vessels to move lymph along. Lymphedema that has not improved with other treatments is sometimes helped with bandaging.
The goal of skin care is to prevent infection and to keep skin from drying and cracking. See skin care tips, in the Managing Lymphedema section.
Combined physical therapy is a program of massage, bandaging, exercises, and skin care managed by a trained therapist. At the beginning of the program, the therapist gives many treatments over a short time to decrease most of the swelling in the limb with lymphedema. Then the patient continues the program at home to keep the swelling down. Combined therapy is also called complex decongestive therapy.
Compression devices are pumps connected to a sleeve that wraps around the arm or leg and applies pressure on and off. The sleeve is inflated and deflated on a timed cycle. This pumping action may help move fluid through lymph vessels and veins and keep fluid from building up in the arm or leg. Compression devices may be helpful when added to combined therapy. The use of these devices should be supervised by a trained professional because too much pressure can damage lymph vessels near the surface of the skin.
In patients who are overweight, lymphedema related to breast cancer may improve with weight loss.
Lymphedema is not usually treated with drugs. Antibiotics may be used to treat and prevent infections. Other types of drugs, such as diuretics or anticoagulants (blood thinners), are usually not helpful and may make the lymphedema worse.
Lymphedema caused by cancer is rarely treated with surgery.
Massage therapy (manual therapy) for lymphedema should begin with someone specially trained in treating lymphedema. In this type of massage, the soft tissues of the body are lightly rubbed, tapped, and stroked. It is a very light touch, almost like a brushing. Massage may help move lymph out of the swollen area into an area with working lymph vessels. Patients can be taught to do this type of massage therapy themselves.
When done correctly, massage therapy does not cause medical problems. Massage should not be done on any of the following:
When lymphedema is severe and does not get better with treatment, other problems may be the cause.
Sometimes severe lymphedema does not get better with treatment or it develops several years after surgery. If there is no known reason, doctors will try to find out if the problem is something other than the original cancer or cancer treatment, such as another tumor.
Lymphangiosarcoma is a rare, fast-growing cancer of the lymph vessels. It is a problem that occurs in some breast cancer patients and appears an average of 10 years after a mastectomy. Lymphangiosarcoma begins as purple lesionson the skin, which may be flat or raised. A CT scan or MRI is used to check for lymphangiosarcoma. Lymphangiosarcoma usually cannot be cured.
Current Clinical Trials
Check the list of NCI-supported cancer clinical trials for supportive and palliative care trials about lymphedema that are now accepting participants. For more specific results, refine the search by using other search features, such as the location of the trial, the type of treatment, or the name of the drug.
General information about clinical trials is also available from the NCI website.
About This PDQ Summary
Physician Data Query (PDQ) is the National Cancer Institute’s (NCI’s) comprehensive cancer information database. The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries come in two versions. The health professional versions have detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions have cancer information that is accurate and up to date and most versions are also available in Spanish.
PDQ is a service of the NCI. The NCI is part of the National Institutes of Health (NIH). NIH is the federal government’s center of biomedical research. The PDQ summaries are based on an independent review of the medical literature. They are not policy statements of the NCI or the NIH.
Purpose of This Summary
This PDQ cancer information summary has current information about the causes and treatment of lymphedema. It is meant to inform and help patients, families, and caregivers. It does not give formal guidelines or recommendations for making decisions about health care.
Reviewers and Updates
Editorial Boards write the PDQ cancer information summaries and keep them up to date. These Boards are made up of experts in cancer treatment and other specialties related to cancer. The summaries are reviewed regularly and changes are made when there is new information. The date on each summary (“Date Last Modified”) is the date of the most recent change.
The information in this patient summary was taken from the health professional version, which is reviewed regularly and updated as needed, by the PDQ Supportive and Palliative Care Editorial Board.
Clinical Trial Information
A clinical trial is a study to answer a scientific question, such as whether one treatment is better than another. Trials are based on past studies and what has been learned in the laboratory. Each trial answers certain scientific questions in order to find new and better ways to help cancer patients. During treatment clinical trials, information is collected about the effects of a new treatment and how well it works. If a clinical trial shows that a new treatment is better than one currently being used, the new treatment may become “standard.” Patients may want to think about taking part in a clinical trial. Some clinical trials are open only to patients who have not started treatment.
Clinical trials are listed in PDQ and can be found online at NCI’s website. Many cancer doctors who take part in clinical trials are also listed in PDQ. For more information, call the Cancer Information Service 1-800-4-CANCER (1-800-422-6237).
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National Cancer Institute: PDQ® Lymphedema. Bethesda, MD: National Cancer Institute. Date last modified <MM/DD/YYYY>. Available at: http://www.cancer.gov/about-cancer/treatment/side-effects/lymphedema/lymphedema-pdq. Accessed <MM/DD/YYYY>.
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Updated: May 29, 2015
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The positive impact a well-tailored regular exercise program can have on a healthy lifestyle, improvement of general well being, increased energy level, and stress and weight management is well known. Additional 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.
Research indicates that the transport of lymph fluid and proteins from swollen areas increases during and after exercises. Studies show that lymph flow increased five-fold in the first 15 minutes and two to three fold during the remaining time of a two hour exercise protocol. In addition to the benefits to the lymphatic system, it is known that muscle activity and diaphragmatic breathing also have a considerable impact on venous blood returning from the extremities back to the heart, which in turn also positively affects fluid management within the interstitial spaces; increased venous return is of particular importance for those individuals affected by lower extremity lymphedema.
To better understand these effects it is necessary to take a look at the anatomy and physiology of the lymphatic and venous systems:
The lymphatic system is closely associated with the blood system and represents an accessory route by which lymph fluid flows from the body’s tissues back into the blood stream. Contrary to the blood system, the lymphatic network and its vessels do not form a closed circulatory system. It begins with small lymphatic vessels (lymph capillaries) in the body tissues, and continues with successively larger lymphatic vessels (collectors and trunks), which ultimately connect to the venous part of the blood system via the venous angles, which are comprised of the internal jugular and subclavian veins on either side of the neck. While the flow of blood through the arteries and veins is uninterrupted, the transport of lymph fluid through the lymph vessel system is interrupted by lymph nodes. The lymphatic system has no central pump; lymph vessels produce their own propulsion system with a network of smooth musculature located in the walls of lymph collectors and trunks.
The superficial lymphatic vessels are located between the muscle layers and the skin. With activity, the muscle contracts and relaxes against the skin, which increases lymphatic activity and return of lymph fluid. In most cases of lymphedema, the elastic fibers in skin tissues affected by lymphedema are damaged and unable to provide adequate resistance against the musculature working underneath, and the blood and lymph vessels within these tissues; therefore it is advisable to wear compression bandages or garments during exercise. External compression compensates for the elastic insufficiency of the affected tissue, providing the resistance necessary to improve lymphatic return and to maintain the reduction of the swelling.
The blood circulatory system represents a closed system with the heart as its central motor, and blood and blood vessels as the other structural elements. The main purpose of the blood vessels is the uninterrupted supply of all body tissues with nutrients and oxygenated blood, and the removal of metabolic waste and carbon dioxide from the tissue cells. The blood pressure inside the venous part of the blood system is considerably lower than the pressure in the arterial side; pooling of venous blood, especially in the lower extremities, is prevented by a system of valves inside the larger veins, which helps to ensure the efficient transport of venous blood back to the heart. A sufficient return of blood to the heart would not be possible without a functioning valvular system and the help of the muscle and joint pumps, diaphragmatic breathing, and the suction effect of the heart during its relaxation phase (diastole).
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.
Which exercises can be incorporated into the patient’s self-management regimen?
There is no real consensus on the type of exercise regimen for individuals affected by lymphedema. Research suggests that a program of progressive exercises, i.e. starting with gentle exercises and increasing intensity moderately over time, tailored to each patient’s needs and abilities, is not likely to increase the risk of lymphedema.
Although research has shown that strenuous exercises can be undertaken by those individuals at risk of, or already having lymphedema without negative effects, it is advisable to start the exercise regimen slowly, which avoids the risk of increased swelling, strains and injury to muscles, and allows the individual to observe how the edematous extremity responds to exercise.
In some cases it is not an easy task to come up with a general statement of which exercises should be avoided for individuals with lymphedema. Many patients find it important to continue their pre-lymphedema activities, even if these activities are considered “high-risk” for lymphedema. Tennis or golf for example does not rank very high on the list of beneficial activities for individuals with upper extremity lymphedema. For patients with lymphedema of the leg, kick-boxing and step-aerobics are activities that bear a great risk of injury and are considered “high-risk activities”. However, for many individuals engaging in these activities, exercise plays such a vital role in their daily routine, and is so ingrained in their personality, that giving up these “high-risk activities” would have a serious impact on their well-being.
The fact is that nobody knows better than the lymphedema patient her-or himself what is good for their body and spirit. As long as the patients are careful and under the care of a trained lymphedema therapist or health care professional with experience in lymphedema, wear their compression garment during these physical activities, and the exercise regimen does not cause discomfort or pain, continuing with these activities should not have any negative impact. However, if the affected limb hurts, feels strained, or increases in volume during and after the activity, the patient should adjust as necessary and consult with their lymphedema therapist or physician. The keywords here are caution and moderation; gradual progression is imperative while trying to accomplish an improved return of lymphatic fluid without adding further stress to an impaired lymphatic system.
For the majority of patients at risk for or diagnosed with lymphedema an exercise regimen typically includes some combination of:
- Flexibility and stretching exercises – these exercises move the skin, muscle, and other tissues in the affected area, and assist in relieving the feeling of tightness that is often associated with lymphedema. An effective flexibility training program can also improve physical performance and help reduce risk of injury. By improving range of motion, the body requires less energy to make the same movements; it also contributes to more flexible joints and ligaments thus lessening the likelihood of injuries. Mild Yoga may be especially helpful to promote both flexibility and relaxation.
- Deep breathing exercises are beneficial as well. Studies have shown that the venous return and lymphatic drainage in the thoracic lymphatic duct is positively impacted by changes in the intra-thoracic pressure caused by deep breathing exercises. The downward and upward movement of the diaphragm in deep abdominal breathing is an essential component for the sufficient return of lymphatic and venous fluid back to the bloodstream. The movement of the diaphragm, combined with the outward and inward movements of the abdomen, rib cage, and lower back, also promotes general well-being, peristalsis and return of venous blood back to the heart.
- Strength training – strength exercises improve muscular power, increase the strength in ligaments, tendons and bones, and positively contribute to weight control. Resistive exercises are typically performed in a repetitive fashion against an opposing load. Gradual progression is crucial and exercise programs should be comparable to the patient’s fitness level. More research is needed to determine whether weight-training and other forms of exercise help reduce the risk of lymphedema.
- Aerobic exercise – aerobic conditioning is generally performed in a repetitive fashion using large muscle groups. Some long-term benefits include decrease in resting heart rate, improved muscular strength, weight control and increased return of venous and lymphatic fluids. Aerobic exercises assist with weight loss and encourage deep breathing, which in turn supports lymphatic and venous return.
As mentioned above, high speed activities such as golf, tennis, soccer or running are not suggested as they may actually increase lymphedema. Activities such as walking, swimming, water aerobics (optimal water temperature about 82F/28C), light weight training or cycling, in contrast are generally safe and considered beneficial. Patients should use caution with hot tubs and lakes during the summer (in warmer climates any time of the year) as they present an increased risk for various types of infections caused by bacteria.
Some general rules on exercising with lymphedema:
- Use common sense
Lifting heavy weights or running a marathon is not the best way to start a lymphedema exercise regimen. An exercise program should start gradually to avoid sprains and injury to muscles and should be followed by a warm down after active exercises. Studies have shown that a 10-15 minute warming down assists the lymphatic system in the removal of excess fluid and metabolites, which have accumulated in the interstitial space.
Watch your extremity during and after exercise activity for any change in comfort level, size, shape, texture, heaviness, or firmness. Any changes could be an indication that you need to adjust a particular activity or take a break. If a change persists for more than a few days, consult with your doctor or lymphedema therapist.
- Work with a lymphedema therapist or other health care professional with knowledge in the treatment and management of lymphedema
Use the resources available to locate a lymphedema therapist. In the beginning of an exercise regimen it is beneficial to work with someone with expertise in lymphedema management who can provide guidance and feedback. In many cases the exercise program needs to be individualized to take into consideration the stage of your lymphedema, possible accompanying medical conditions (heart problems, pulmonary issues, diabetes, etc), or if you are taking any medication that has side effects. Once you are familiar with the exercise program, you will be able to work on your own. If, for any reason, you do not have access to a lymphedema therapist, or a health care professional with knowledge in lymphedema, consult with a Physical Therapist and explain your specific situation. These professionals have access to information specific to lymphedema, and will be able to provide guidance.
Working with instructors and trainers without a medical background and no knowledge of the specific issues regarding lymphedema may have adverse effects, such as increased swelling or injury.
Copyright © 2015 StepUp-SpeakOut Inc.
This article is reprinted with permission as it appeared 09/29/2015.
With lymphedema, it sometimes seems there are no answers, only mysteries. Has it always been that way? Or were there answers once, ideas that might have been known long ago but are lost to us now, perhaps forever?
In a strange little book by Cornelius Stetter called “The Secret Medicine of the Pharaohs,” there is a brief reference to the depiction of pathologic medical conditions in Egyptian art and hieroglyphics. He mentions one figure in particular among the thousands of relief sculptures on the South-facing façade of Queen Hatasu’s temple at Deir el-Bahari, carved into the limestone wall nearly 3500 years ago.
Here the ancient artists have recorded the celebrated voyage of the Egyptian Queen to the neighboring country of Punt, in what is now coastal Somalia. She is greeted by the Prince of Punt and his wife, the Princess Ati, whom Stetter believes to be suffering from a serious disease condition: lymphedema. “Bags of flesh hang from her arms and thighs,” he tells us, “and only the joints of her hands and ankles are visible.” It’s a description that sounds depressingly familiar.
Lymphedema can have many causes. In the Western world of today the most common cause is the destruction of lymph nodes and vessels due to cancer surgery and radiation. Though not an especially rare side effect of cancer treatment, it is little understood by the medical community, much less by the public. For that reason each new diagnosis has the impact of a complete surprise. The doctor is puzzled. The life-long process of keeping the swelling under control is delayed while a specially trained therapist is located and the insurance company informed, through appeals and grievances, of the treatment required for a disease they claim they never heard of.
Ati must have struggled with her doctors, too. In the austere view of the early Egyptians, it was the enjoyment of meals that was the source of human grief. Eating with pleasure resulted in poorly digested food, a toxic potion called “pain and slime” that flooded the body with illnesses of all kinds. With that in mind, preventive medicine in Ati’s day involved the routine use of laxatives, emetics, and enemas. To these early doctors, Ati’s medical condition would have seemed the result of too many meals, too richly enjoyed. But could they seriously have considered her guilty of enjoying her food? In her deformed and desperate condition, we wonder, was she capable of enjoying anything at all?
Like our doctors today who too often fail to diagnose lymphedema and offer little treatment and less support, we can imagine Ati’s doctors considering her condition and pursing their lips in frustration. The prescription? Enemas probably, and emetics to vomit up the “pain and slime” responsible for her disfigurement. All of which must have been about as distressing as our rituals of therapy and garments. And still, nearly 4000 years later, we have no cures, no miracles – only the daily coping.
Having read Stetter’s sorry description of Ati, we launched a hunt for a picture of the wall sculpture. We googled Deir el-Bahari, and in moments discovered the complete text of an 1891 publication on Egyptology and, amazingly, a drawing of the very relief we were looking for. There they stand, all these centuries later: the Prince of Punt presenting rich gifts to the visiting monarch, and beside him his remarkably ungainly wife, the Princess Ati.
In the traditional perspective of ancient Egyptian art, they stand with their feet and faces in profile and their torsos facing outward toward the viewer. But unlike the typically slim and shapeless limbs in other paintings and sculptures, Ati’s flesh hangs in lumpy folds from her arms and legs. In procession behind her are her two sons, her daughter, a few retainers and the so-called “Great Ass,” the beast appointed to carry Ati’s unmanageable weight wherever she might wish to go.
Poor Ati. We expect slouched shoulders, lowered eyes, all the signs of humiliation we understand to be part of our condition. But to our wonder, she is not a pitiful figure at all, as she presents herself unabashedly before the glorious Queen Hatasu, acknowledged daughter of the Sun. Ati stands erect and proud, performing her princessly duties with no shadow of self-consciousness. That, as much as the dramatic folds of her flab, is what must have caught the artist’s eye. It has certainly caught ours.
There is no hiding lymphedema. Either your limbs bulge like Ati’s, or you begin the unending routine of daily self-massage, fussy skin care, and wrapping in layered bandages or conspicuous compression garments night and day. But for Ati, it seems, there’s nothing about it she wishes to hide. She’s a princess, after all. Chin up, no holding back, she takes her rightful place in the royal procession without a qualm.
If Ati could see us now, she would no doubt be surprised by the rhythmic massage and the mummy-like bandages that we call our lymphedema treatment, and amazed at the reduction in swelling that these methods produce. But it’s clear from these few pictures we have of her that she’d be even more baffled by our efforts to camouflage our deformed arms and hands, the all-too-common attitude of shame that makes us shrink in the face of our vulnerability.
Maybe Ati’s doctors had no answers for her, but Ati herself had an idea that gave her a quality of life we can only envy. In spite of everything – the “bags of flesh”, the “Great Ass,” and the nosy limestone-carving paparazzi of her day – Ati knew she was a princess, inside and out. Hopefully that lesson, carved in the limestone of Queen Hatasu’s temple, isn’t entirely lost on us today.
Copyright © 2014 StepUp-SpeakOut Inc.
This article is reprinted with permission as it appeared 11/17/2014.
Lymphedema develops when the lymph system is unable to remove the lymph fluid from an area of the body, and the protein rich lymph fluid is left behind to accumulate in the tissues, and this stagnant tissue causes damage. It’s not “just swelling”.
The lymphatic system is a crucial, yet poorly studied, entire body system of lymph nodes and collecting tubes that captures the protein rich fluid that leaves our arteries and veins and is a crucial component of our immune system. You can see an illustration of it here: http://www.sasklymph.ca/lymph_diagram_wide.php
Although the lymphatic system runs nearby the blood vessels, unlike our circulatory system, it doesn’t have a heart to pump the fluid and it relies on the actions of our surrounding muscles and some contractions of the lymph vessels to move this important lymph fluid back into the circulatory system. The lymph system is in “quadrants”: right and left upper quadrants and right and left lower quadrants and each has pathways back to our venous system. It’s a fragile system, nearly impossible to see and easy to damage. Lymphatics run throughout our intestines and along our bones as well.
Edema is swelling, and “lymphedema” is swelling due to excess lymphatic fluid. But, it’s not so simple.
- Lymphedema can exist without obvious swelling, but the tissue is still being damaged by the inflammation caused by the fluid. Often, before there is swelling, there are symptoms of heaviness, tingling, warmth, numbness and/or pain.
- Over time, extra lymph fluid in the tissue causes changes in the skin, the “subcutaneous tissues,” with extra fat being deposited and fibrosis (hardening) of the tissues.
Lumphatic fluid is part of the body’s immune system so a damaged lymphatic system, with lymphedema, both decreases the body’s protective defenses and is prone to infection.
The lymphatic system can be damaged by surgery, radiation, chemotherapy or trauma. Some people have lymphatic systems that are genetically predisposed to fail. They may have a condition called “primary lymphedema”, which can occur at birth or later in life, or they may more easily acquire lymphedema after damage to the lymphatic system—called “secondary lymphedema”.
Most people who get lymphedema after cancer treatments develop it within three years of treatment, but the risk is life-long. Our lymphatic system is also prone to aging, so the onset can be at any point after the damage has occurred. There can be triggering events that overwhelm a fragile system: infection, overuse, extreme heat, air travel, medical trauma—such as IV’s, injections or excess pressure on the body.
Unfortunately, there’s no single agreed upon scientific definition of lymphedema, so it’s a “clinical” diagnosis. It’s important to look at the whole picture: not just size and volume measurements, but the appearance of the limb or other body part. As Andrea Cheville, MD of Mayo Clinic has written:
“There is no one value or standard you can use to say, ‘OK, if you meet that you have lymphedema, and if you don’t, well then you don’t have it,’” says Dr. Cheville. “For example, there may be no size or volume changes in the arm, but you could have subtle hand swelling or pitting on the arm. So it’s important not to be too locked into arm measurements alone, as that can create a false sense of security. You also need to be watching the arm and looking for the loss of what we call ‘anatomic architecture’ — an inability to see the veins and tendons in the arm as clearly, or less pronounced knuckles, or skin that is less wrinkled and therefore looks younger.”
Lymphedema is defined as stages:
- Stage 0: Latent lymphedema: an at risk-area that may have excess tissue but no lingering swelling
- Stage 1: swelling that pits—indents when pushed, but can be reduced with treatment
- Stage 2: swelling that persists, even with treatment, causing the skin to harden
- Stage 3: advanced swelling with extensive tissue changes, some changes irreversible
Please look at these images of hand and arm lymphedema: http://www.stepup-speakout.org/What_does_lymphedema_look_like.htm