Most people with lymphedema complain that a limb feels heavy, achy or full. Clothes may suddenly not fit right or cut at the wrist or ankle. If feet are affected, it is difficult getting shoes to fit. Pain is reported by about half of patients and is very individual. It may interrupt both sleep and day-to-day activities.
Swelling can be visible and makes the limb look waxy. Tendons, bones and blood vessels may be hard to see. Joint stiffness is common, especially in small joints like those in the hand. Jewellery may feel tight, and should be removed if it indents the skin. Early on, swelling may get slightly worse during the day and disappear at night. Heat, travel, repeated activity and overuse can intensify symptoms.
Lymphedema is chronic. Left untreated, it may get worse. The limb may continue to gradually swell. Recurring infection, pain, and potential loss of use of the limb are all possible. Since swelling is not widely recognized as a medical concern, lymphedema often goes undiagnosed from months to years.
Lymph nodes are the body’s natural filtration system. They are key in removing waste, viruses, bacteria and dead cells from lymph, a protein-rich fluid. The lymph system collects lymph from tissue just beneath the skin. Gradually this fluid makes its way to the nodes, located mostly in the groin, armpits, deep abdomen and at the base of the neck. The lymph then moves on to end in the venous system just above the heart. Normally the lymphatic system transports and filters about 10 per cent of the fluid back to the heart. Two types of lymphedema, primary and secondary, can affect the system.
This type occurs when a defect in the lymphatic system prevents lymph fluid from being collected and transported. Type I (Milroy’s) is hereditary, typically appearing at birth. Type II (Meige’s Syndrome) is also hereditary and shows up during puberty. Type III (lymphedema tardum) does not have a family link. It is more common in women than men, and appears after age 35. Around one in 6,000 people develop primary lymphedema. In about three-quarters of cases, it affects only one side of the body. In others, it appears on both sides but there is usually quite a visible difference. Of those who have it only in one leg, a quarter will eventually get symptoms in the other one.
The secondary type is by far more common. It is caused by blockage or interruption in the lymph system. Surgical removal of lymph nodes, radiation therapy, infection, trauma, cancer and chronic wounds are all common causes. Most often, secondary lymphedema affects those who have had breast cancer, and had lymph nodes removed in the armpit area. Having lymph nodes removed carries a 12 to 60 per cent chance of developing swelling. Lymphedema will affect the arm or leg that had lymph nodes removed. Most often, swelling appears within the first year after surgery. However, it can also emerge years later.
Secondary lymphedema can take other forms:
See your family doctor or oncologist. You may be referred to a certified lymphedema therapist. This specialist may be a physiotherapist, registered massage therapist, registered nurse, physician or licensed athletic trainer who also has special training in lymphedema. Your provincial lymphedema organization should be able to give you a listing of therapists in your area. Although most cancer clinics across Canada do treat lymphedema, often funding is only for cancer patients. Your family doctor can provide a referral.
Being assessed can help in many ways. It will confirm the diagnosis and the stage of your lymphedema. Your limbs will be compared so that you know the volume difference between them. Afterward, you will have a basic understanding of the lymph system. You will be given treatment options, strategies to help you manage, and ways to prevent related problems. Based upon your assessment, your therapist will make recommendations for your situation.
Complex decongestive therapy (CDT)
This treatment typically includes these five approaches:
Your therapist will give specific recommendations for all of these treatments. Ideally, you should treat large limbs daily for two to six weeks, an hour or so per day, until a stable reduction in volume is achieved. Since treatment is not always covered by insurance, this may not be possible for everyone. Talk to your therapist and make a plan that works for both of you. Your commitment is the most important factor. Lymphedema is managed very well by those committed to following the routine.
At the same time, remember the condition changes. You will realize certain daily activities make swelling worse. You may have concerns with your body image. Learning how to deal with and remain consistent in managing lymphedema is key to success. You are likely to see your therapist every six to 12 months for assessment or treatment.
For instance, after a mastectomy you might experience a 20 per cent difference in arm size. Typical treatment would involve four to five sessions of one hour per day. During this time, the therapist would do manual lymphatic drainage and compression bandaging, teach strategies like self-bandaging and massage, and develop an exercise program. After a week of intense treatment, a custom or standard compression sleeve and perhaps a glove would be fitted.
Until daytime garments are fitted, it is vital to keep up with night bandaging. Otherwise, you will lose the gains you worked so hard to achieve. A custom garment typically comes from Germany and takes two to four weeks to arrive. Follow-up is recommended at two and six weeks to check that measurements are not increasing.
Daytime garments wear out after four to six months. Stay on top of reordering garments, as you will lose ground on swelling control without them. Generally, the larger and more changeable the limb, the more frequent assessments should be.
Many garments on the market can replace or simplify night bandaging. They are easy to put on, and apply accurate graded compression to your limb. If you are interested in alternatives to bandaging, ask your therapist. Many insurance plans cover all or part of the cost of these garments, but you must check.
Lymph fluid is rich in protein. In a petri dish in the lab, it grows bacteria beautifully. This means that infection is a risk. We rely on our lymphatic system to help us fight infection. In lymphedema, lymph fluid takes longer to clear the affected limb. The lymphatic system in that limb does not work as well as it should, so steps must be taken to avoid infection.
Living Well With Lymphedema
Anna Ehrlich, Alma Vinje-Harrewijn, Elizabeth McMahon
Voices of Lymphedema
Anna Ehrlich, Elizabeth McMahon
Lymphedema: A Breast Cancer Patient’s Guide to Prevention and Healing
Jeannie Burt and Gwen White
Lymphedema: Understanding and Managing Lymphedema
after Cancer TreatmentAmerican Cancer Society
Weissleder and Schuchhardt
Textbook of Lymphology
Best Practice for the Management of Lymphedema
Saskatchewan Lymphedema Learning Association
Eunice Mooney at firstname.lastname@example.org
Kim Avanthay at email@example.com
(click on ‘OntarioSite.htm’)
Dr. Vodder School™ International, Victoria, British Columbia
LANA - Lymphology Association
of North America
(listing of certified therapists)
National Lymphedema Network (U.S.)
If a break in the skin allows bacteria in, or a bacterial infection appears in the bloodstream, it may settle into the affected limb. This could develop into cellulitis or infection in the limb. A hot, swollen, painful and red limb is likely infected. This can develop within a matter of hours. You may also have fever or flu-like symptoms. If you ever notice symptoms of infection, it is essential to see a doctor that day. Antibiotics, either intravenous or oral, will be prescribed.
After one infection, you are more likely to have another. If you are going away on holiday, it is wise to carry a two-week supply of oral antibiotics.
You can prevent infection and manage lymphedema in several ways. Follow the advice below that applies to where your lymphedema is located.
Your lymph system will try to create new pathways for fluid to move. Tight clothing can block these paths.
Lymphedema is a chronic condition that requires attention, but it should not rule you or limit your lifestyle. As your condition changes, you will need to keep up with care. It is possible to find a lymphedema routine that allows an active, rewarding life full of adventure.