Self-care for Lymphedema Hints and Tips - our favourite top ten

By Lori Radke

Lymphedema requires consistent selfcare to manage its complex challenges. The Dutch Best Practice Lymphedema guidelines recommend a chronic care model with an emphasis on active patient involvement, education, self-management and a more hands-off supportive approach by health professionals1 The following tips are a guide for you to successfully take control.

1. Risk reduction and education are the best medicine.

By keeping active, maintaining a healthy weight, preventing infections, and avoiding injury to your affected limb, you will reduce the risk of these main triggers to developing or worsening your lymphedema. Timely diagnosis and early, regular treatment are also important2

Education can provide patients with essential tools to help self-manage their lymphedema. It is important to access current and reliable websites, books, and resources. The Canadian Lymphedema Framework (www.canadalymph.ca) and the National Lymphedema Network (www.lymphnet.org) have two excellent sites. A valuable resource on the CLF website to share with your primary physician is the downloadable “Physician Reference Card” on lymphedema prevalence and treatment in Canada3

2. Compression is your best friend.

Compression bandaging provides the most volume reduction in the intensive phase of Complex Decongestive Therapy (CDT)4

Multi-layer compression bandaging has been used successfully for many years. Alternative compression systems. Alternative (and lighter) compression systems are now available. Having more than one option for compression allows a more customized approach to your lymphedema treatments.

Mastering self-bandaging can help you to successfully self-manage your lymphedema. A retrospective study on a self-bandaging programme in Quebec found the majority of participants were able to reduce their limbs to a level equal to the outcome achieved by trained therapists. When provided with adequate training and follow-up, these patients expressed an increased feeling of control over their lymphedema and appreciation for the effectiveness of bandaging5 The Canada-based Lymphedema Night Compression study (LYNC) showed significant improvement in arm lymphedema volume with the addition of nighttime compression whether through the application of compression bandaging or through the use of a nighttime compression system garment6

3. Compression garments are not all equal.

Each person’s limb is unique and responds differently to compression. Your age, the condition of your skin and tissues, your ability to don/doff the garment, and cost are important considerations in garment choice. Knowing the many and increasing options available and the differences between various garment brands will help find the best garment for you. Replace your garments at least every six months to en- sure you are getting the prescribed compression. Wearing your daytime garment every day in the maintenance phase of CDT will maximize the benefits gained in the intensive phase. Ready-made garments are sometimes a good starting point for upper limbs, if your arm length and shape is fairly normal. If a circular knit garment is not firm enough to control the swelling, you may require a less stretchy, custom flat-knit garment. If you have moderate/severe lymphedema, the shape of your limb is more bulbous in one or more areas, or your limb is extra short or long, you will require a custommade garment. Your lymphedema therapist and fitter will explore options with you to get the best fit and comfort. The garment fit and efficacy should be continually re-evaluated and modified. You may also consider a different garment type or compression level to wear during specific activities such as exercise or gardening.

4. Soft, supple and intact.

Application of a good moisturizer with a low pH to the skin twice a day reduces the risk of skin breakdown and subsequent infection. A key goal of skin care is to prevent the potentially serious outcome of cellulitis (bacterial infection) in the affected body part. Cellulitis can make you very ill, cause lymphedema to get worse, and make you more susceptible to future infections. If the tissues have been irradiated, extra care is needed to protect the fragile skin in the area. If you get a cut or abrasion on the limb or region of swelling, you should clean the area immediately and apply an antibiotic ointment. At the first signs of infection (redness/rash, hot, increased swelling, pain, feeling unwell, fever), you should seek medical attention as the infection can spread very quickly and you may require intravenous antibiotics. Getting back into your compression quickly after cellulitis has been shown to reduce infection recurrences

5. Lymphedema and exercise…they can and should go together.

Exercise can improve strength, quality of life, physical function and reduce fatigue, anxiety and depression in cancer survivors9. Exercise is strongly encouraged to help manage lymphedema and there have been no adverse side effects on lymphedema found. In a recent study published in 2020, resistance exercises did provide a reduction in arm volume, irrespective of use of a compression sleeve10

The 2019 Exercise Guidelines for Cancer Survivors9 advise the following cautions in regards to lymphedema and exercise, but remember these are only based on breast cancer related arm lymphedema (BCRL). If you have lower extremity lymphedema, there may be extra precautions to consider.

• If you have pre-existing lymphedema or comorbidities, get medical clearance from your doctor before starting any exercise program.

• “Start low and progress slow” with resistance exercise involving large muscle groups, 2-3 times per week, in a supervised setting. Evaluate the status of your lymphedema limb after each exercise session. There are no specific weight restrictions.

• Aerobic exercise has been found to cause no lymphedema exacerbations, but evidence is insufficient to make specific prescriptions.

• It may help to wear compression (bandages/ garment) during exercise but this needs to be evaluated individually.

6. Consider self care as “me” time

Changing perspective about the burden of self-care and lymphedema may help to increase your compliance with time-consuming activities. One of my patients noted that she managed better with all her self-care, including night compression, when she stopped resenting the time it took and considered it to be “ME” time. She would use the time to meditate or listen to her favourite music. Pathways Winter 20/21 edition includes a wonderful article about “Putting the Self back into Self MLD” which reinforces this theme11

7. Check in regularly.

An important selfcare skill for patients is learning to monitor for changes in their lymphedema. This can prevent long term deterioration by alerting you to when you need a reassessment by your lymphedema specialist. Many patients report that by checking in regularly they feel more accountable, more inspired to keep up with self-care, to learn about new products, and benefit from refreshers on self-bandaging techniques, self-massage and/or other education.

8. There is no single recipe for treatment.

Lymphedema therapists are trained to use all components of CDT to treat their patients; however, it is crucial to recognize that the response to treatment will differ from one individual to another. The cause and stage of your lymphedema can affect how ready and able you are to undergo lymphedema treatment and to learn self-management. It will take time for you and your lymphedema therapist to find which treatments work best for you (and your lifestyle) and to devise a customized lymphedema management plan.

Manual lymph drainage (MLD) is one component of CDT still up for debate. A recent study of BCRL was unable to determine any added benefit of MLD even with newer fluoroscopyguided MLD12, and a Cochrane review recommended more research is needed to evaluate the value of MLD or self MLD for different types, stages and locations of lymphedema13

9. It takes a village.

Dealing with a chronic condition such as lymphedema places you at the center and a team around you. Your family physician will be monitoring your cancer and lymphedema and ensuring other medical conditions are well-managed. A certified lymphedema therapist is valuable as lymphedema knowledge within the medical world is limited. These professionals undergo specialized training that currently includes a minimum of 135 hours. A knowledgeable and caring garment fitter is essential as fitting of a compression garment is an art as well as a skill. Supportive family and/ or friends also make the ongoing self-management practices of bandaging and massage easier for you. Homecare services can be an asset. There is a huge emotional component for many patients when they are diagnosed with lymphedema. The therapies can be overwhelming and you may experience body image concerns. Ask your doctor or therapist about referral to psychosocial services, or options for lymphedema support groups if you are struggling.

10. Learn from others.

Patients living with lymphedema often come up with innovative and brilliant ways to manage their condition. Here are a few of my favourites:

• Slip a crinkly shopping bag over your wrap to get your arm in your sleeve. It can easily be carried in your jacket pocket or bag.

• Carry a small tube of antibiotic ointment in your bag to treat small abrasions immediately.

• Wet your compression sleeve or stocking (after you put it on!) to cool your limb and your body on a hot summer day.

• Place your night compression garment in the freezer to cool it prior to putting it on.

• Shapewear, Spandex, and athletic type garments (cycling shorts, running bras, etc.) can be an inexpensive alternative for truncal or pelvic lymphedema.

• Use a small foam paint roller to reach more areas on your trunk and shoulder during self-massage, or stone roller for head and neck lymphedema.

• Carry surgical gloves to put over and protect your compression glove.

• Use an older compression sleeve over your good one to protect it when gardening or working outside.

• Check out “Hints & Tips” in Pathways for more ideas, the Winter 20/21 edition14 LP

References can be found at https://canadalymph.ca/pathwaysreferences.

References can be found at https://canadalymph.ca/pathwaysreferences.