General Guidelines for Self-Care

John Fuller Beckwith3/14/2024

Living with lymphedema may be summed up as: ’manage your lymphedema, live your life.’ In most cases lymphedema will not restrict your choice of activities, only ask that you make thoughtful modifications as needed. With good management, you can keep your lymphedema under control while also enjoying the lifestyle you choose. Below are a few guidelines to help you be most successful managing your lymphedema.

Compression

Compression is the cornerstone of lymphedema management. Your therapist may have provided you with several, ‘tools,’ for compression. These may include a compression sleeve or stocking, instruction in self-bandaging, and/or a device with Velcro closure. An elastic sleeve or stocking is for use during waking hours and should not be worn while sleeping. Bandages or Velcro devices are meant for night time but are allowed to be worn anytime in a 24-hour period. Please follow the compression schedule as recommended by your therapist, which could include times when you may safely go without compression. If you have questions about your compression schedule, please feel free to contact your therapist.

Self-MLD

Self manual lymph drainage should continue once per day. This will help mobilize and redirect fluid to alternate drainage pathways. The time of day you perform this is up to you and should be convenient in order to allow for daily or near daily MLD.

Skin Care

Skin care is central to prevention of infection. Since with lymphedema there is an increased risk of infection, daily meticulous skin and nail care is the primary method of preventing the occurrence of infection. Inspect your skin closely for signs of infection. Try to use a low pH soap and low pH lotion on your skin. Your therapist can provide more detailed instructions for infection prevention.

Lymphedema Exercises

These are the remedial exercises meant to specifically assist with reducing both the fluid and fibrosis of lymphedema and should be done with compression on the limb or body part. Perform once per day. Remember to stop if there is any unexplained pain or discomfort.

Air Travel

Air travel presents a risk (but not a certainty) to bring on or increase lymphedema. This is not a reason to avoid air travel. The key to managing this risk is to wear adequate compression and to be thoughtful about your activity while on the plane. If you have lymphedema be sure to wear your sleeve or stocking. If you are at risk but don’t have lymphedema, you should at least carry a well-fitted sleeve or stocking with you on the plane so you may have it to put on if swelling were to occur during the flight. You may consider supplementing the sleeve or stocking with one compression bandage. Your therapist can show you how to apply the bandage over top of the sleeve or stocking.

Exercise/Activity

In this instance we are talking about general exercises such as running, aerobics or resistance training. There has been a lot of discussion and many questions about exercise in the presence of lymphedema. Generally, exercise is a good thing, but there are important caveats and not all people respond in the same way. Follow the adage, “All things in moderation.” Begin activities/exercises slowly and increase the level of intensity (resistance, frequency, duration, reps) very incrementally. Listen to your body – many people learn to recognize the sensation changes that signal they are doing too much, indicating it is time to rest and, ‘dial back,’ on the intensity.

Living with lymphedema is a learning process. You will become more adept over time and learn the unique ways your body responds. You don’t need to be perfect, rather it is important to be mindful and consistent. Most persons with lymphedema experience setbacks, this is not unusual. Setbacks can seem discouraging, yet can easily be brought back under control by returning to the basics as noted above. When in doubt, reach out to your therapist.