Guidelines on Lymphedema

American Lymphedema Society originally published this.

1. Keep the entire at-risk quadrant spotlesslyclean. Natural gentle cleansing products arestrongly encouraged. Dry skin in a gentle butthorough non-vigorous fashion. Pay specialattention to creases in the skin and the areasbetween toes and fingers.

2. Make certain all fabric making contactwith the skin is regularly laundered. Thisincludes bandages and compressiongarments.

3. Use a top quality moisturizing lotion tohelp maintain the integrity of the skin. Thelotion you choose should not contain alcohol,dyes, lanolin, mineral oil, petroleum products,talc, or perfumes. (Note that pure essentialoils have a fragrance, but are not consideredperfumes.) The lotion should also haveantiseptic properties and correct ph. If youhave lymphedema, apply it before and afterremoving bandages or compression garmentsand after bathing.

4. Avoid chemical hair removers. If possible,use a well maintained electric razor, replacingthe heads regularly. Because of the danger ofcuts and nicks, we do not recommend using aregular razor. If you do use one, wash theblades in hot soapy water, and change themoften.

5. Avoid extreme temperature changes when;a. Bathing, showering, swimming.b. Washing anything; dishes, floors,laundry, etc.c. Receiving therapeutic treatments.d. At the gym; no sauna or hot tub.

6. Protect the affected quadrant from weather extremes;
a. In hot weather seek air conditioning and keep the limb cool.
b. In cold weather seek central heating. If you must go out, have the at risk quadrant well bundled, but not sweaty.
c. In sunny weather, protect the limb with sun screen and/orcovering.

7. Medical care, such as injections, blood pressure, drawing blood,allergy tests, etc., needs to be performed on an unaffected limb.(Note: A leg can often be used if both arms are at-risk.) Anyprocedure which punctures the skin in the affected quadrant is to beavoided, including acupuncture.

8. Avoid all tight clothing, jewelry, and elastic bands on the affectedlimb, including watches, rings and binding stockings.

9. Be careful cutting nails. Do not nick skin or cut cuticles. Ifsomeone does your nails for you, inform them of your risk. If youmust push back cuticles, use a cuticle stick covered with cotton.

10. Avoid all types of trauma; cuts, scrapes, bruises, burns, includingsun burns, sports injuries, insect bites, all animal bites and scratches,and forceful impact. This does not mean withdrawing from living,but be sensible and protect yourself; use seatbelts, use a thimble ifyou sew, wear rubber gloves when washing dishes or gardening, wearclosed shoes to avoid foot injury for an at-risk leg. Wear insectrepellent when outdoors, sunscreen and clothing to cover an at-riskquadrant. Any measure you can take to prevent the onset oflymphedema is worth the effort, as it can mean avoiding a lifetime ofmaintenance and pain.

11. Avoid pushing, pulling, or lifting with the affected limb. Do notkick or slide heavy packages with an affected leg. Do not use over theshoulder straps on an affected arm. Do not lift anything over 15pounds, less if you are out of shape or the weather is hot and humid.This includes the lifting of babies, children and pets. Carrypackages, purses, or briefcases only on your unaffected side, and askbaggers at the store to place your bags in the car for you.

12. Exercise is important. However, if the affected limb begins toache or feels tired, rest it immediately, and elevate it if possible. Consult a lymphedema specialist before proceeding with an exerciseroutine. Safe recommendations are walking, swimming or waterexercise. If you have lymphedema, it is important to be bandagedduring exercise.

13. Avoid any repetitive movements, especially those againstresistance.

14. Never do anything to exhaustion. Your at-risk quadrant willfatigue more quickly than the rest of your body, and will take longer to recover from physical exertion. If your arm or leg begins to ache,rest and elevate the limb. If elevation does not alleviate the symptoms,see your physician.

15. Barometric pressure is reduced at high altitudes, and can lead tothe onset of lymphedema, or exacerbate the condition. Therefore, acompression garment is extremely important if you travel by air, orhike in high altitudes. This is recommended even if you don't havelymphedema. It becomes essential if you have lymphedema, even ifthe swelling has subsided. In this case, you should consider wearingbandages when flying, as they offer greater protection than acompression garment. For an at-risk limb, over the counter garmentsare available for a modest cost. This small step may prevent a lifetimeof maintenance.

16. If you have had an axillary dissection you may want to wear softpads under your bra straps, as this protects the lymph nodes andvessels around the collar bone. Avoid wearing a heavy prosthesis, orunder wire supports.

17. If you live in a damp or humid climate, and your skin isfrequently moist, try dusting the skin with cornstarch. This alsoworks for feet during the summer months. Keeping the skin dryhelps reduce fungi.

18. Maintain your ideal weight and drink plenty of pure water. The recommended quantity of water is one ounce for every two pounds of body weight. Example: If you weigh 128 pounds, drink 64 ounces, ortwo quarts of water daily. If you do not normally drink this muchwater, increase intake gradually until the recommended quantity isacheived

19. Many patients have a misunderstanding about protein. They believe that because lymphedema is ahigh protein edema, they should avoid eating protein. This is not true. While we do not recommend ahigh protein diet, a no protein diet will weaken connective tissues and cells. This in turn will make thecondition worse. We recommend a diet in which easily disgestible proteins make up between 10 and 30percent of your total caloric intake. Know when to get help.

20. It can be helpful to have a professional assessment annually. If you have a leg at risk, visiting apodiatrist can insure that your feet stay healthy. Be sure to inform him or her that you are at risk fordeveloping lymphedema.

21. MLD, manual lymph drainage, is a recognized therapy not only as a treatment for lymphedema, butfor prevention as well. If you have had lymph nodes removed, your immune system is compromised.MLD helps to increase immune response. Other forms of massage therapy should be avoided on theat-risk quadrant, because they temporarily shut down the lymph vessels in that area. These include deeptissue, reflexology, rolfing, shiatsu, Swedish, etc.

22. Thoroughly examine the affected quadrant monthly. Do not ignoreany swelling in the affected arm, leg, chest wall, armpit, back, groin,abdomen or genitals. Report any swelling immediately. Or, if any ofthe following are present; redness, inflammation, blistering, rash,warmth in the limb, fever, change in the texture of the skin, or lymphleakage through the skin, see your oncologist or physician immediately.Any of these can be the onset or worsening of lymphedema.

23. The lymph system is an important part of your immune system,and removal of lymph nodes compromises your immune response inthe at risk quadrant. If you get a cut, scrape, or other break in the skin,use a topical antibiotic, and notify your physician at once. He or shewill probably prescribe an antibiotic to reduce your risk of developingan infection. Remember, an infection in an at-risk limb or quadrantcan lead to the onset of lymphedema if it is not treated promptly.

24. Lymphedema is often preventable, or at least can be postponedfor many years. If you notice any slight increase in fingers, hand, arm, chest wall, back, toes, feet, ankles, abdomen, or genitals, seeyour physician for a proper diagnosis. If you are diagnosed withlymphedema, seek treatment. Lymphedema is easier to control atits onset, as further deterioration can be prevented and often aninitial reversal is possible. Your limb will still be at risk, but youwill remain symptom free. Remember what renowned lymphologistDr. Foldi has written, "There is no insignificant swelling."