How to treat lymphedema

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I get a lot of emails, asking me how to treat lymphedema. Since I don't have the time to answer all these emails personally, I thought it might be a good idea to try to anwer this question here.
At the same time everyone is invited to write his of her ideas about the treatment of lymphedema down in the guestbook.
Fortunately a lymphedema therapist, Cyndi Ortiz, has offered to write some faqs on the treatment of lymphedema.

I'm not a nurse, or a doctor or a lymphedema therapist, but I have lymphedema in my left arm and hand since 1995. So I have experience with lymphedema and I read a lot about the experiences of other patients and there are the things therapists told me. I don't pretend to know the truth. Everyone must try to find the treatment and way of life that suits him or her best. But there are some basic treatment that, I think, improves every case of lymphedema and that is lymphdrainage and the wearing of compression stockings and/or bandages.
I guess getting lymphedema or not is a matter of having a weak or a strong lymph system and I suppose we who suffer from it, have a weak system. If you get lymphedema or not, seems a matter of genetics. Two of my aunts on mothers' side had the same operation as I had and also had lymphedema afterwards. I guess it's a family affair.
Now about what I do to improve my lymphedema:

• I wear an arm stocking on the left and a small hand or mitten. Both are from Jobst during daytime. The arm stocking has strength number 2 and the hand number 1.
• On top of that I wear 2 bandages around my arm: one for the lower part and one for the higher part, only during daytime.
• I get some exercise: I walk the dog around three times a day and I cycle.
• I try do yoga exercises 5days a week (Hatha yoga).
• I try to eat as healthy as possible: at least two fruits a day and fresh vegetables, not much meat and try to drink a lot of water, but I tend to forget that. I don't smoke, I don't drink much alcoholic drinks. I'm not overweight.
• I'm having lymphdrainage by a physical therapist, who had a training in treating lymphedema, once every three weeks.
• My husband has learned how to do lymphdrainage and treats me once every week. But it's difficult to keep that regularity. Most of the time it's once every three weeks.
• A therapist tried to get me to massage my arm daily, but I tend to forget it. The point is: if I'm going to spend more time on my lyphedema I think I'll get insane. I just cannot spend more time on my arm than I am doing now, or I'll get the feeling I'm a lymphedema myself instead of a human being.

The condition of my arm has improved gradually in the last two and a half years. Two years ago (August 2001) it was swollen. It had some fibrosis at the wrist. The pain was so bad, I could hardly sleep at night. My arm felt heavy.
Now it's still difficult to raise my arm. I don't know why this is so. But especially right after I've had a treatment my arm feels relaxed and the night after I sleep very well.

I think, that patients that are healthy and have a lot of exercise, have less trouble with lymphedema than patients who have no exercise at all or who are, for instance, are obese or who are diabetics.

When you think you have lymphedema: an unaccounted for swelling of a limb, I think you should do the following:

• get a good lymphedema therapist, preferably someone who is a physical therapist, to give you lymph drainage and good advice how to deal with this affliction. Physical therapists that won't tell you to not move your arm or leg, but insist instead of using the limb just as you did before. They know that if you don't use arms, legs, feet, hands etcetera, the body will get rid of these parts. That's only natural. So your muscles and bones will deteriorate. But your muscles are needed to pump the inner lymphedema fluid out of your limb. Lymph drainage deals with the upper fluid under the skin. Muscles with the inner excess fluid.
• you can get lymphedema everywhere.
• try to get a good fitting stocking for the affected limb; Maybe even some compression garments; The stocking prevents your arm/feet/leg/hand from getting thicker.

Frequently Asked Questions on the treatment of lymphedema

by Cyndi Ortiz

1. What is lymphedema?
2. What causes lymphedema?
3. Is it lymphatic, vascular, or both?
4. I was treated for cancer ten years ago, and had no problems with lymphedema until recently, is that normal?
5. How is it treated?
6. Should I use a Sequential Pump?
7. I have edema occurring in areas other than the arms and legs; how is that treated?
8. Should I take diuretics?
9. Is Reflexology or Accupuncture an appropriate method of treatment for Lymphedema?
10. I have blisters and wounds that will not heal; what should I do?
11. Good Skin Care is essential
12. What exercise is best for lymphedema?

and:

• Sources for compression items or bandaging alternatives.
• Conclusion.

1. What is lymphedema?

Lymphedema is a chronic disease, that is caused by lymphatics that did not form correctly, or some other damage to the lymph system. The lymph system consists of nodes that are connected by a vast system of vessels. The lymph system runs parallel to the venous system. When the arteries take the blood down to the feet, a component of the blood called protein plasma is released into the interstitial tissue, which is the tissue "between" the muscles and the skin. Interstitial tissue is "in between spaces". This protein plasma is being delivered to this tissue to deliver nutrients, oxygen and moisture to this tissue. The veins collect some of the excess of this fluid as they pump the blood back up to the heart. Whatever the veins leave behind, the lymph vessels collect. When the lymph system is not sufficient or is damaged, it cannot work properly, therefore this fluid is left behind and begins to accumulate, causing chronic, pitting, edema or swelling. This fluid has not been cleaned yet, and it is dirty fluid. It is very high in bacteria, placing you at risk of cellulitis or erypsypselas (infection in the skin), blisters, and wounds. Symptoms of lymphedema include pitting edema (pitting means the skin stays indented when you press on it) or swelling that will not go away, stasis dermatitis (dry flakey skin), blisters, and sometimes blisters that burst into wounds. Not everyone experiences the blisters, and wounds. Some people experience pain and some do not. If the edema is mild, and is not pitting (skin stays indented when you press on it), then you may have edema due to congestive heart failure, renal failure or incompetancy, harmone problems, or some other reason. If this is the case, see your doctor regarding a proper diagnosis as these other diagnosis can be serious and require immediate medical attention. The swelling caused by these diagnosis is normally temporary and not chronic. If you experienced a trauma or injury, the edema is not reducing after eight weeks, and the edema is becoming hard, you may have lymphatic damage resulting from the injury.

2. What causes lymphedema?

Lymphedema can be caused by the lymphatic system that did not form correctly. This can be a hereditary malformation, or a birth defect. This is called primary lymphedema. There are three types of primary lymphedema: congenital, symptoms are present at birth, praecox, symptoms occur during adolescence, or tarda, symptoms occur later in life. Lymphedema can also occur due to lymph node removal, radiation, surgical procedures interrupting the lymph system, or trauma. This is called Secondary lymphedema. Symptoms commonly occur in the legs or arms, however, it can also occur in other parts of the body. The most common occurrence of secondary lymphedema results from treatment of cancer such as lymph node dissection or removal, and/or application of radiation. Surgical procedures occurring in the lower abdomen (inquinal lymph region), may also cause lymphedema in the legs.

3. Is it lymphatic, vascular, or both?

A venous Doppler can rule out vascular disease. A Doppler exam is an exam that will show whether or not arterial flow and venous flow is adequate or if it is low. Vascular disease presents with mild edema, the skin turns brown or even black (hyperpigmentation), and typically involves chronic non-healing wounds. Some people, however, have both. Lymphedema does not normally cause skin discoloration or hyperpigmentation. If you have hyperpigmentation, and severe edema, you may have both vascular disease, and lymphedema. Both vascular disease and lymphedema are treated the same way. Vascular disease is typically seen in diabetics, but is not only associated with diabetes.

4. I was treated for cancer ten years ago, and had no problems with lymphedema until recently, is that normal?

Yes. Many people who underwent cancer treatment in which lymph nodes were removed and/or radiation applied report no edema for years, and then suddenly, there seems to be a problem. Some people experience lymphedema right away, some never experience it, and some have a delayed reaction. In almost all cases where lymphedema occurred years later, there is some type of trauma, or muscle strain that brought on the onset. Some people reported they twisted an ankle, some people report they lifted something very heavy, some people report a bug bite or cut, and so on. If you have had cancer treatment, and do not have signs or symptoms of lymphedema, just be a bit cautious.

5. How is it treated?

Lymphedema is a chronic disease of which there is currently, no cure. Effective treatment and disease management is essential. This disease can be effectively managed, however, it is an ongoing effort. The earlier treatment is implemented, the easier it is to manage. Effective treatment consists of a physical therapy technique called manual lymph drainage, and good external compression.

1. Manual Lymph Drainage (MLD)/Combined Decongestive Therapy (CDT) The first thing to do is find a good certified physical therapist or occupational therapist who has received at least 135 hours of training in the application of manual lymph drainage or combined decongestive therapy. Manual lymph drainage is a massage technique helps the body open pathways for lymph to flow, and to redirect lymph flow. It basically assists in unclogging or opening up the body(s plumbing system. It also assists lymphatic fluid drainage, as the therapist massages the fluid towards the lymphatic ducts where normal drainage occurs. This therapy should be administered at least three days per week for thirty days, or ten days in a row, and should be applied for at least one hour. If a therapist tells you he or she will treat you less than that, seek out an alternative therapist. Around the time of discharge, or when therapy is just about complete, the therapist will teach you how to apply MLD on yourself. Some therapist spend a little time with each visit teaching therapy, however, if your therapist is requiring that you do the therapy on yourself in the clinic within the first ten visits, this is NOT appropriate care. It is the therapists responsibility to treat your disease, and once significant reduction is achieved, then teach you how to keep the swelling down. In some countries other than the United States, patients are not taught how to apply treatment on their own. Patients are allowed to continue going to therapy, as the health care system in other countries is designed differently. In the United States, health insurance companies limit the number of therapy visits, therefore, Americans are taught to apply MLD on their own, so that they are able to effectively continue managing their disease. It is essential, that MLD is applied for both treatment, and continued regularly throughout your lifetime in order to effectively maintain edema reduction long-term. In the United States, I have seen the best results on patients when MLD is applied by a therapist trained at Klose Training. There is a therapist directory on the Klose Training website, that will help you find someone to help your in your area. This website can be located at www.klosetraining.com. Basically, what you should expect when going to therapy is as follows:
   1. You will have an initial evaluation to determine your needs and the course of treatment.
   2. Therapy should be applied in a series of visits for about one month - sometimes longer if your case is more severe.
   3. Massage should be applied by the therapist for about one hour - should include the entire body.
   4. Massage should be followed by wrapping your affected leg or arm. Alternative compression may be applied for other affected areas of the body.
   5. Towards the end of your treatment, after good reduction has been achieved and you are ready for Discharge, your therapist should educate you on how to apply message yourself, how to bandage yourself, bandaging alternatives, good skin care, proper diet, proper exercise techniques, and you should be measured for compression stockings or a daytime compression garment. You should be provided with information in writing and verbally on continued disease management of lymphedema. If one or more of the above services are not being provided, you may want to seek out a different therapist.
2. External Compression External compression is essential. Without good external compression, manual lymph drainage is not effective. Most therapists apply Compression bandaging immediately after applying MLD. External compression therapy helps by pushing excess edema causing fluid back into the vascular system for removal from the body. The fluid is voided from your body upon urination. This therapy, both MLD and external compression are assisting the body in doing what it normally does, but cannot do on its own. Compression bandaging should always be applied with foam, and ACE wraps are NOT appropriate. Your therapist should utilize compression bandages that were specially designed for lymphedema patients. These bandages look similar to ACE wraps, however they are lighter in color, and not as elastic or tight as ACE wraps. ACE wraps cause an over compression on the lymphatics, and actually block lymphatic flow, making the condition worse. It is very important that your therapist includes foam under the compression bandaging. Bandaging without foam can cause problems with tourniquet, over compression, or bandages can cut into the skin and cause cellulitis (infection in the skin).
3. Bandaging Alternatives Most people utilize compression bandaging while in therapy and for about two weeks after discharge from therapy, grow tired of bandages and discontinue application. Edema returns, and then treatment is needed again. If you are not able to apply compression bandaging, or simply can't tolerate the bandages, there are other items that are just as effective if not more effective that will assist you in treatment and disease management success.
   1. These items include Reid Sleeves and Circ-Aides, which are foam compression binders that are custom measured just for you. There are also directional flow garments such as a Jovi-Pak or Solaris Tribute garments, which include some foam, and seams which assist in directing lymph towards the lymphatic ducts which remove excess fluid. The Jovi-Pak and Tribute garments are available not only for leg and arm edema, but also for edema occurring in the hips, waist, abdomen, buttocks, face, neck, chest, trunk and genitals. These items can be used for nighttime compression, with a sequential pump, or during the day if needed.
   2. Elastic compression stockings or socks should ALWAYS be worn during the day. If you are not wearing some type of daytime compression, you will have difficulty keeping swelling down, even with other compression devices. The Contour company has elastic compression garments for daytime compression that can be applied to any part of the body, just as the Jovi-Pak and Tribute garments. (See resource guide below)

6. Should I use a Sequential Pump?

While there have been clinicians, therapists, and patients who have not had good results with pumps and do not recommend their use, hundreds of people have experienced great results with the proper use of the right pumps. Pumps are not for everyone, and success does depend on which pump is used, and the proper application of pumps. Pumps, like prescription drugs, or even like driving a car, if not used properly can cause damage, or will not achieve results. In providing lymphedema therapy for thirteen years, helping hundreds of people, I have never seen some of the problems some people are reporting. Many of the people I have worked with have successfully used their pump for five to ten years with no complications. The key is using the right pump the right way.
Some therapists may tell you that pumps are a waste of money, that they do not work, that they do not help in opening up lymphatic flow, or that pumps make edema worse. Only part of this is true. When any clinician gives you information on clinical treatment, ask to see scientific clinic studies. Many "opinions" have been published, but no scientific clinical studies have been conducted or published that will back up these statements. There are however, many many scientific, clinical, published studies that prove the efficacy of pumps. Pumps also do not assist in opening up the lymphatics, nor were they designed to, nor are the recommended as such. Pumps are to be used as an alternative for bandaging, and MLD is applied to open up the lymphatic system. It is not appropriate for any clinician or patient to deprive you of any treatment that may really help you, by providing you with misinformation. If your disease is not properly treated and managed, serious health complications can occur. If a pump will assist you in accomplishing effective disease management, and your are given misinformation regarding their effectiveness, this is call for serious concern. Pumps have been clinically proven, beyond opinion, to help hundreds of thousands of people worldwide, but it is important to make sure you are a candidate, make sure you use the right pump, and make sure you use your pump correctly. It is not complicated, and I will review pump information below.
When reviewing pumps, look for a pump that contains ten or more chambers, operates on a short thirty-second cycle time, and applies graduated compression. The body operates on a pressure gradient system, so it is essential to obtain a gradient or graduated compression pump. Gradient or graduated means the pressure at the feet or hand is greater than the thigh or shoulder. Pressure starts at 60mmHg, and is about 1.5% less each chamber as compression moves proximal or towards the thigh or shoulder. Pumps that contain more chambers, and operate on a thirty second cycle versus sixty second cycle more closely mimics massage, and do not over compress the superficial lymphatics. Pumps that are not gradient, operate on a sixty second cycle and contain less than ten chambers can cause a reflux of fluid in the distal veins, and damage the superficial lymphatics. This has been proven upon review of pump compression during Doppler Ultrasonography. The result of this is pain, and edema that does not reduce but actually gets worse. Also, pressures should not be set higher than 60mmHg. Doppler Ultrasonography shows that when external pressures are applied above 60mmHg, venous flow decreases rather than increases. The goal is to increase venous return in order to remove excess edema causing fluid. When venous return decreases, so does lymphatic flow.
Unless you have no other alternative, do not accept a pump from a supplier who is going to ship it to you or drop it off at your door step. Pumps should be set up in your home, and the provider should properly educate you on the proper use of the pump. If your health insurance company requires you to use an in-network provider who will not provide home set-up, have your physician include "home-set-up and patient education", in his written prescription for your pump.
Pumps should not be applied over compression bandaging or compression stockings. They should be applied for about two hours in the morning, and two hours at night during treatment, and then as needed for continued edema reduction. Pumps should not be used during sleep over night, unless you are hospitalized, and your physician is directly monitoring treatment. I recommend the use of a Reid Optiflow, Jovi-Pak or Tribute for use with sequential pumps. These foam compression binders can be very effective in protecting the superficial lymphatics, and assisting the direction of lymphatic flow. Manual lymph drainage should also be applied either before and after pump therapy, or during pump therapy. If you have genital edema, or edema in the hips waist and abdomen, the LymphaPress pump has a bodysuit appliance that applies compression from the feet to the chest area. This has assisted my patients in significant abdominal reduction of edema.
You should not use a pump if you have edema throughout your entire body, if you have a blood clot, if you have an active infection, if you have (kidney)renal failure, if you have active cancer, if you have congestive heart failure, or if you are not applying manual lymph drainage. Pumps are also not normally recommended for babies, or children under age six.

7. I have edema occurring in areas other than the arms and legs; how is that treated?

Edema can be effectively controlled with MLD, and compression. Jovi-Pak, and Tribute have nighttime and daytime compression garments specifically for genital, chest, neck, face, hips, waist, abdomen, buttocks, and trunk edema. For the genital, hips, waist, abdomen and buttock area, compressive stretchy bike shorts or girdles can be applied over these garments to assist with external compression. Contour also carries daytime compressive garments for all areas of the body.

8. Should I take diuretics?

Diuretics should not be taken just for treatment of lymphedema. Diuretics remove only water and essential potassium, but leave behind proteins and bacteria now in a higher concentration. Proteins left behind by diuretics cause the edema to become hard and fibrotic, making edema reduction more difficult. The bacteria left behind increases your risk of cellulitis (infection in the skin). However, do not stop taking diuretics unless your doctor tells you not to take them. You may have other health conditions requiring the use of diuretics. Talk with your doctor about the complications caused by diuretics when they are used ONLY for the treatment of lymphedema, and discuss whether or not it is appropriate for you to discontinue taking them. Never stop or start taking any prescription medication without the permission of your doctor.

9. Is Reflexology or Accupuncture an appropriate method of treatment for Lymphedema?

Reflexology is great as an adjunctive method of treatment, but not a replacement for MLD. Reflexology is not effective by itself for treatment of lymphedema, but can be helpful when applied in addition to MLD. Accupuncture is NOT recommended for lymphedema. Any needle pokes can place you at risk of cellulitis (infection in the skin). It is not recommended to even have blood drawn for testing or the intravenous administration of drugs applied on the affected leg or arm.

10. I have blisters and wounds that will not heal; what should I do?

The excess edema causing fluid is very high in bacteria, in addition, it blocks nutrients and oxygen from getting to the skin to keep it healthy. Removing this fluid is essential, and permanent wound healing will not occur until this fluid is removed. Good skin care is also essential. Keep the skin very clean, as well as your environment. Clean any wounds several times per day with Saline, and utilize good wound care methods as ordered by your physician. Make sure you keep the wound covered with an occlusive dressing in order to keep bacteria out of the wound. If the wound becomes red, warm, and painful, see your physician immediately as it may be infected. Implement a diet that will ensure good nutrition, high in vitamins, nutrients, and antioxidants.

11. Good Skin Care is essential:

Always keep your skin clean and moisturized. You may have to reapply moisturizers throughout the day, as it is very important to keep the skin soft and supple. Do not allow burns, bug bites, cuts, blood draws, or blood pressure to be taken on the affected leg or arm. This places you at high risk of infection. If you do experience any of these, immediately clean the injury thoroughly, and cover it with an occlusive dressing. If it becomes painful, warm, and red, there may be an infection brewing. Contact your doctor immediately as he or she may need to place you on oral antibiotics.

12. What exercise is best for lymphedema?

The best exercise for lymphedema is walking, or water aerobics. Even kicking around or moving your arms around in the pool will help significantly. Water applies some external compression, yet does not cause muscle strain. Muscle strain can cause edema to become worse. If you enjoy lifting weights, do so by making slow precise movements, and do not use weights that will over strain muscles.

Sources for compression items or bandaging alternatives:

• Reid Sleeves
• Solaris Tribute
• Circ-Aid
• Jovi Paks
• Contour Compression Wear
• Gradient pumps
• U.S. Therapists Locator

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