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Family Health Magazine
MODERN LIVING

Managing Lymphedema
A practical approach to a chronic condition

Lymphedema is a condition where your body cannot properly drain lymph fluid. Most often, it is an arm or leg that swells with collecting liquid. This happens because your lymphatic system is not working the way that it should.

What does lymphedema feel like?

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.

Why does it happen?

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.

Primary lymphedema

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.

Secondary lymphedema

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:

• Chronic edema is swelling that lasts more than three months. Resting or elevating the limb does not help. It may be caused by a fracture, blood vessel conditions (chronic venous insufficiency), chronic skin disorders and inflammation, orthopedic surgery, obesity, and post thrombotic syndrome following a blood clot in a vein. Kidney and heart disease can also play a role.
• Lymphatic filariasis is an infection caused by a parasite carried by mosquitoes. It causes blockage of the lymphatic system. It is a major cause of lymphedema worldwide in tropical and subtropical countries.

What should I do if I think I have lymphedema?

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.

Recommended treatments

Complex decongestive therapy (CDT)

This treatment typically includes these five approaches:

• Manual lymphatic drainage (MLD) is a special light massage technique. It helps re-route lymph flow around blocked areas into healthy lymph vessels. It also softens hardened (fibrotic) areas.
• Compression bandaging uses short stretch bandages over layers of padding. This bandaging creates graded compression to move fluid up the limb and soften tissue.
• Exercise programs are designed to fit your needs. Exercises are done at least 20 to 30 minutes, three to four times a week.
• Self-management includes skin care, preventing infection, bandaging, massage and wearing special day and night garments.
• Education and learning through research, absorbing information, and asking questions.

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.

Preventing infection

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.

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.

Care for your skin well.

• Keep your skin spotlessly clean. Shower every day, and apply a moisturizer that does not contain perfume.
• If your leg is affected, keep your heels soft with regular moisturizer. A good foot bar is available from Rocky Mountain Soap Company. Do not let skin build up on your heels - use a gentle pumice stone regularly.

Avoid cuts, scratches and skin irritations.

• Wear rubber gloves for washing dishes and all cleaning activities. Wear garden gloves and long sleeves when gardening. (You can find thin, durable gloves at Lee Valley.)
• Only use deodorants, soaps and lotions that do not irritate your skin.
• When shaving, use a shaving gel. Replace the blades often, or use an electric razor.
• If your skin cracks or breaks, clean it with soap and water. Hydrogen peroxide or tea tree oil are excellent wound cleansers. Follow with Polysporin™ and a band-aid if the wound is open. Check daily to make sure the area is clean and healing.
• If you have a manicure or pedicure, do not have your cuticles clipped. Use a cuticle cream regularly, and keep cuticles pushed back.
• With new footwear, be very careful that you do not get blisters. Limit time spent barefoot as it puts you at risk of cracks in your heels. You may also step on a sharp objec
• Do not have acupuncture, injections, intravenous infusions, vaccinations or blood pressure done on your affected side.
• If having surgery, post a sign at the head of your bed to alert caregivers. Your therapist may have bright reusable armbands.
• Buy a medical alert bracelet and wear it on your affected side.

Avoid mosquitoes, wasps, bees and other biting insects.

• Spray your clothes with insect repellent and wear long sleeves. Insect bites typically take longer to heal on the affected side. If you are bitten, watch the bite for signs of infection.

Avoid hot temperatures, burns and sunburns.

• Always use a sunscreen with a SPF of at least 30. A sunburn inflames the lymphatics and increases swelling.
• Do not use hot tubs and saunas.
• Showering is better than bathing. If you love long hot baths, try to keep them cooler, shorter and less often.
• When baking, protect your forearms with extra long oven mitts or purchase rack guards from a kitchen store or Lee Valley.

Avoid wearing clothing and jewellery that binds or leaves creases in your skin.

Your lymph system will try to create new pathways for fluid to move. Tight clothing can block these paths.

• The biggest offender is the bra. Silicone pads, available at department stores, can cushion your shoulders. Make sure the chest straps are not too tight.
• If you wear a breast prosthesis, be sure it fits well and does not pull the shoulder strap down.
• Do not purchase bras with underwire. Remove underwire from bras you already own.
• Tight waistbands can affect your legs.
• Carry your purse on the opposite shoulder.
• If you hike, keep your pack light. Be sure it fits well, with its weight shared by both hips.

Avoid straining your affected limb.

• This is usually more of a problem for arms than legs. Use common sense, and get help with heavy tasks. Spring cleaning and furniture moving are not the best activities for you.
• Carrying a carload of groceries into the house may not be a good idea. Ask for help, use a cart, park close, carry fewer items at a time, and use your affected arm less.

Too much of anything can aggravate the problem.

• Computer keying can affect arms, while standing or sitting may irritate legs. Take regular breaks and do some deep belly breathing.
• Elevate your limb if you can. Go for short walks through the day if possible. When traveling, always wear your compression garments. Pack your bandages or night compression garments in your carry-on luggage.
• Remember, you must stay active for your lymphatic system to work well. If you stay sitting during a long flight, your limb will likely swell. Get up and move around every half hour if you can. If your arm is affected, elevate it on the seat ahead of you. If it is your leg, work your ankles and knees throughout the flight. Remember deep belly breathing exercises.

Care for your garments.

• Wash your daytime garments every night. Use a few drops of dish soap and rinse well. Allow to air dry overnight.
• Remember to reorder garments every four to six months, or if runs show.

Do not lie on your affected side at night.

• This affects drainage, as lying on your affected side will compress and stop detours from taking fluid to the heart.

Change your lifestyle if necessary and maintain a healthy body weight.

• Eat a well balanced diet. Drink at least eight glasses of water a day. Limit caffeine to one to two cups per day. Avoid stress when possible. Maintain a healthy body weight, as obesity makes lymphedema worse.

Exercise regularly.

• Being active for 20 to 30 minutes every day is very important. The lymph system is more efficient when you are active. Always wear your daytime compression garments while exercising.
• Ask a friend or family member to exercise with you. Pick an activity you enjoy. Walking is great. If you have arm or hand edema, add walking poles to help reduce swelling by using more forearm muscles. Yoga can be an issue for some. Positions like ‘plank’ and ‘downward dog’ can be a problem since you are bearing weight on your arm or leg.
• There are conflicting opinions about exercise and lymphedema, but again, common sense rules. Return to your favourite activities gradually and watch how your limb responds. One to two pound free-weights for your arms are an excellent addition to a workout.
• When you add a new activity, follow up with your therapist for re-measuring. This will give you feedback on how the activity affects your limb.

Keep an eye on your condition

• Follow up with your therapist on a regular basis, every six to 12 months. You may need an intensive course of treatment once or twice a year.
  

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.