Lymphedema Frequently Asked Questions
The following are frequently asked questions about the lymphedema treatment program for upper, lower, primary and secondary Lymphedema. Please be advised that these answers are only meant to serve as a guide to you. Each individual's situation is unique and each person should personally consult with their own supervising physician/therapist about their own condition.
"Why do I have to wear my compression garment/bandages when I exercise?"
When an individual has lymphedema, the pressure of the edema stretches out the skin so that it no longer provides a firm surface for the muscles to contract against. Exercise causes increased blood flow which caused an increase in lymph load in an already compromised limb. The compression of the garment/bandage provides a "new firm skin" for the muscles to contract against so that the pressure will be exerted on the lymph vessels and the fluid will move. Without the garment/bandage, the skin will just stretch and the force of the muscle contraction will not be translated to the lymph vessels. The involved limb could swell more if you exercise without compression.
"Why do I need to change my compression garment twice a day?"
Compression garments are made of elastic materials that stretch out after wearing for about 12 hours. The areas where a limb bends (knee, elbow) stretch out more than the rest of the garment and then those areas do not receive the correct amount of compression which can allow pooling of edema fluid that can cause constriction at those areas. Some individuals can wear compression garments day and night and do not need to bandage their involved limb at night. These individuals should change their garments in the morning and again in the evening. Others may need to apply compression bandages for nighttime wear or use an alternative device such as a Reid sleeve, Tribute, or Jovi. Consult with your treatment team to discuss which option is right for you.
"Why do I have to wash my compression garment every time I change it?"
Compression garments are made of elastic materials that stretch out after wearing. Washing them daily helps them to retain their elasticity as well as removes perspiration, bacteria and dead skin that accumulate inside the garment from normal wear.
"Why do I have to use moisturizer on my affected limb?"
Moisturizing the skin helps to retain the elasticity of the skin which helps to avoid cracks/breaks in the skin. This is important because any break in the skin allows bacteria to enter the limb which is at risk for infection because of the lymphedema.
"Why do I have to wear compression on my affected limb 24 hours a day?"
Our tissues are supplied with oxygen and nutrients by the blood. This blood is pumped around the body by the heart. With every beat of the heart, blood is filtering into our tissues. 90% of the blood volume in the tissues is picked up by the veins and brought back to the central circulation. 10% of the fluid volume in the tissues can only be brought back to the central circulation by the lymphatics. So, even when you are sleeping, even if your arm is elevated, blood is getting to your tissues (thank goodness!). Remember that in an impaired lymphatic system, the muscles need something to contract against to assist the flow of lymph fluid. Otherwise, the fluid will just pool under the skin and the limb will swell overnight. Then you may not be able to fit properly into your compression garment the next morning. That 10% of fluid volume, the lymph fluid, amounts to 2 liters a day in the whole body. Remember that a compression garment is not engineered to "reduce" a limb. It is engineered to "hold" a limb that has already been reduced. However, you should always discuss your individual case with your treatment team, as there are no absolutes and each person is different. 24 hour compression may not be right for you.
"How long can I keep my garment off?"
Generally, in the first few months of CLT treatment it is not recommended that you remove your garments for more than 30-60 minutes at a time. Again, the skin of a lymphedematous limb is often stretched and will allow edema fluid to rapidly re-accumulate if there is no compression on the skin. The goal after treatment is for the skin and subcutaneous tissues to remodel to the new "smaller" size. This will not happen if the skin is allowed to stretch significantly. Once the limb has remodeled (6-12 months after CLT treatment) you may be able to remove the garment for longer periods without the limb swelling.
"Why do I have to exercise?"
Appropriate exercise stimulates the flow of lymph. Muscle contraction and changes in pressure in the chest from deep breathing cause changes in pressure on the lymphatic vessels. When the muscles contract against the compression of the compression bandages or compression garments worn on the affected limb this creates changes in tissue pressures that help the lymph to flow.
"How long after treatment will I have to wear the garment?"
Generally, for as long as the lymphatic impairment lasts. The short answer is until someone finds a way to reverse that impairment. Right now that means forever as there is no cure for lymphedema. In the case of impairment secondary to the surgical removal of lymph nodes/vessels, this is usually not reversible. In the case of lymphatic impairment due to primary lymphedema, this is not reversible. Microsurgical techniques to re-connect lymphatics with other lymphatics or veins have not been very successful. Scientists are working on techniques to encourage re-growth of lymphatic vessels but these are in the experimental stages and on animal models. But, this is encouraging. Finally, there are scientists interested in the lymphatics! This is progress!
"Can I go swimming and if so, do I have to wear the garment in the water?"
Swimming is one of the best exercises for lymphedema. If the affected limb is submerged in the water, then you do not have to wear your garment because the hydrostatic pressure of the water is providing the compression on your limb. Some people like to wear an old garment in the water because they like the extra compression that it provides, and they don't worry about getting in and out of the water and putting on and taking off the garment repeatedly. Always rinse the garment well after swimming, whether in chlorinated, fresh or salt water. Take care walking at poolside or on the shore to avoid cutting your feet. Wear water shoes or sneakers on the beach. Wear rubber soled shoes/sandals at poolside and in shower/locker room areas to avoid catching fungal infections. And always wear sunscreen outdoors to avoid sun damage to the skin.
"Why can't I put my garment in the dryer?"
You can but the heat will ruin the elasticity of the garment and perhaps shrink it. Some manufacturers say that you can put them in the dryer, but that will wear them out faster and they are costly to replace. Garments are best air dried - out of direct sunlight.
"Can I remove my garment to have relations with my partner?"
Yes, of course, and if you fall asleep without it, that's OK too. There are always exceptions to the rule. While you want to do the best for your condition, you need to work your lymphedema home program into your lifestyle, keeping in mind the basic principles of the lymphatic system and lymphedema management. Consistent compression is important but there are times when you need to be without compression. Just make sure that you are monitoring your limb and that any increase in swelling is addressed quickly to avoid problems.
"When I receive lymphatic drainage treatment, where is all that fluid going?"
The fluid is directed back into the central circulation and whatever volume of fluid is in excess of the "normal" volume of your limb is excreted from your kidneys in your normal urine.
"What are the signs of infection in my affected limb and how do I know whether I have an infection?"
Infection in a lymphedematous limb/area can look different in each individual and with each infection. Common signs of infection are unusual redness, warmth, blotchy appearance to the skin of the affected limb/area. This is sometimes accompanied by a sensation of itching, burning, or pain in the area. Some people develop a fever or feel like they "have the flu" in the affected limb/area. Regional lymph nodes can be painful and swollen. Some people are nauseous. The problem with these symptoms is that they also occur with other conditions. You can have a red rash from an allergic reaction or insect bite. You can have nausea and fever from the flu or a viral or bacterial infection that does not involve your affected limb. Sometimes, the inflammatory reaction to a rash or insect bite can precipitate an infection. That is why you should always carefully inspect your involved/at risk areas carefully every day for any signs of breaks in the skin, redness, increased swelling, etc. As soon as you notice something different, call your physician/therapist to discuss it with them. Many physicians provide their patients with oral antibiotics and instructions that they start to take them if they feel that they have an infection and then to call the office IMMEDIATELY to come for an emergency visit to have the area evaluated. You should never attempt to "treat" an infection yourself. The reason to have antibiotics on hand is to be able to start them at the first sign of infection, just until you can get medical attention. Abuse of antibiotics is dangerous, but under-treating an infection in a lymphedematous limb or limb at risk for lymphedema is also dangerous.
"Why should I avoid prolonged sun exposure?"
Fist of all, the sun is hot and direct exposure causes the skin temperature to rise. The application of heat to the involved extremity causes the blood vessels to open up (dilate) and more blood to flow into the area. This causes an increase in fluid load in the affected extremity and can cause an increase in swelling. The sun's rays damage the skin. A "tan" is really the skin's way of responding to damage from the sun by depositing melanin, a skin pigment, in the upper layers of the skin. Even if you don't normally "burn", you should wear sunscreen on your affected limb as well as the quadrant of your body that connects to that limb. For example, if you have lymphedema in your right arm, you should also have sunscreen on your neck, shoulder and chest and back on the right side. Actually, you should always use sunscreen on your entire body to avoid skin cancer, but at least have good coverage on your affected areas.
"Why are people with lymphedema of the arm/hand told to avoid manicures?"
The skin is a very porous organ. It absorbs chemicals. Acetone and other nail polish removers are chemicals. The solvents that are used to remove artificial nails are strong chemicals. Cutting cuticles too close can allow bacteria that are always on the skin to enter and possibly trigger an infection. Nail salons are public places and instruments are not sterile. People who wear artificial nails are more prone to develop fungal infections