Living with lymphedema: Take precautions, get support

Lymphedema refers to swelling that occurs in one of your arms or legs that is caused by a blockage in your normal flow of the lymphatic system, an important part of your immune and circulatory systems. The blockage prevents lymph fluid from draining normally, therefore as the fluid builds up, the swelling continues.

In people who have been treated for cancer, lymphedema may occur as the result of surgery or radiation during the treatment for cancer of the breast, ovaries, prostate, as well as sarcoma, lymphoma and melanoma in both men and women.

Lymphedema symptoms include:

Swelling of part of your arm or leg or your entire arm or leg, including your fingers or toesA feeling of heaviness or tightness in your arm or legRestricted range of motion in your arm or legAching or pain in your arm or legRecurring infections in your affected limbHardening and thickening of the skin on your affected arm or leg

Because of improvements in radiation and surgical techniques (such as the use of sentinel node biopsy), lymphedema is less common today. However, lymphedema, when it does occur, requires careful attention and can be difficult to manage on a daily basis.

There's no cure for lymphedema. Treatment focuses on reducing the swelling and controlling the pain. Lymphedema treatments include:

Exercises. Light exercises that require you to move your affected arm or leg may encourage movement of the lymph fluid out of your limb. Ask your doctor for a visit with a lymphedema therapist who can recommend exercises and strategies that are best for you.Wrapping your arm or leg. Special compression sleeves and bandages to reduce swelling may be part of your recommended treatment.Massage. A special massage technique called manual lymph drainage encourages the flow of lymph fluid out of your arm or leg. Manual lymph drainage involves special hand strokes on your affected limb to gently move lymph fluid to healthy lymph nodes, where it can drain. Pneumatic compression. If you receive pneumatic compression, you'll wear a sleeve over your affected arm or leg. The sleeve is connected to a pump that intermittently inflates the sleeve, putting pressure on your limb. The inflated sleeve gently moves lymph fluid away from your fingers or toes, reducing the swelling in your arm or leg.

If you are living with lymphedema, it is important to take special precautions:

Avoid vaccinations, injections, blood pressure monitoring, blood drawing, and intravenous administration in the arm affected.Do not wear tight-fitting clothing or jewelry.Be aware of exposure to extreme temperatures, such as sunburns, hot baths, and saunas.Watch for early signs of infection such as redness, swelling, increased warmth, tenderness, or fever.

If you have lymphedema and are struggling to manage the symptoms, request an appointment with your health care team to discuss your plan. Specifically ask for a visit with a lymphedema specialist so that you can learn as much as possible about potential management strategies.

During your visit, request the documentation needed to assist you with insurance coverage of the treatment recommended. Many times, physical and massage therapy will require a letter of medical necessity for your medical insurance to cover the costs.

Get support from others who are also experiencing lymphedema. Breast cancer survivors have formed dragon boat teams throughout the country to support each other through a successful training and exercise program. Also, visit the National Lymphedema Network website to find support groups in your area. Share your experiences and ideas with each other through this blog.

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