What is Lymphedema and What Can We Do About It?
A Physical Therapy Perspective
You may have heard about lymphedema from a friend or acquaintance who has had breast cancer and developed a swollen arm, or from somebody who doesn’t walk around that much anymore because of their “swollen ankles.” But what does lymphedema mean and what can be done to treat it?
I am a physical therapist who treats lymphedema and have seen how it affects people’s lives and wellbeing. My uncle suffered from lymphedema off and on his whole life and I was involved in his medical care through his last years, including his lymphedema management.
What is the Lymphatic System?
The lymphatic system is a system of vessels spread throughout the entire body that helps return fluid back to the heart to be either:
- Excreted by the kidneys and thus prevent the buildup of excess fluid around the tissues of the body, or
- Recirculated to help to maintain normal blood volume and normal blood pressure.
What is Lymphedema?
Lymphedema occurs when something is wrong with the lymphatic vessels that causes the flow of fluid through them to slow down or stop. This in turn causes the fluid to back up resulting in edema; those swollen arms and ankles your friend has. This backup also hinders the circulation of infection fighting cells.
There are two types of Lymphedema:
- Primary lymphedema is a congenital condition where a person is born with vessels or nodes that are either too few, too narrow, or too wide.
- Secondary lymphedema is the consequence of damage to an otherwise healthy lymphatic system.
Lymphedema is a Chronic Condition
Unfortunately, lymphedema is a chronic condition, meaning that it is not cured, but rather something that will need to be managed and controlled for life. Chronic conditions can feel scary and disheartening. If you have lymphedema, you may be wondering what can be done. The answer is A LOT! Keep reading, information is power.
Treatment of Lymphedema
Stanford has a well-regarded and established lymphedema program where detailed information can be found about the treatment alternatives. To summarize, the main goals of lymphedema treatments are to:
- Reduce the edema
- Stabilize the edema level
- Help the lymphatic system keep working its best
I Have Lymphedema,
What Can I Expect From Treatment?
If you have lymphedema, you will have a care team that will help you manage your condition.
- A physician
- A physical therapist (PT) or occupational therapist (OT) who is trained in lymphedema
- And YOU, the individual with lymphedema
The Role of the Physician
Your doctor will diagnose your lymphedema, prescribe your medications, and help you choose the best combination of treatments for you. These may consist of one or a combination of the following: medication, compression, specialized massage therapy, exercise, and surgery.
The Role of the Rehabilitation Team
Your lymphedema trained PT or OT will be responsible for performing Complex Decongestive Therapy (CDP) which includes the following:
COMPRESSION
- Wrapping the affected limb/area in specialized compression bandages to reduce and stabilize the edema.
- Fitting you with the appropriate garment such as a compression sleeve or sock, with the right amount of pressure to keep your lymph flowing and your limb looking and feeling good.
- Set up of a compression pump that is used to help circulate the lymph fluid.
MASSAGE (Manual Lymphatic Drainage)
- MLD is a systematic light massage technique that directs fluid trapped in the swollen limb to areas where the lymphatic vessels are working better.
EXERCISE
- Your therapist will instruct you in the right intensity and type of exercise for your condition.
- Studies have shown resistive exercise to have beneficial effects on reducing the intensity and frequency of lymphedema flare-ups.
- ALWAYS wear your compression garment when exercising (sleeve, bandages, sock, etc) no matter what the activity. OK, maybe not swimming.
EDUCATION
- Self Assessment: simple ways to check for signs you may be beginning to swell or developing an infection
- Exercise: advise you on appropriate type and intensity of strengthening, stretching, and cardiovascular exercise
- Self Massage: where your lymph nodes are and how to improve your lymph circulation
- Self Compression: how to use your compression garments and how to use your compression pump if prescribed by your doctor
- Skin Care: how to care for your skin and protect yourself from injury.
- Management: how to lower your risks for lymphedema onset or flare-ups
Your Role – Yes you are a part of your treatment team!
Keep in regular contact with your doctor and report signs of:
- INFECTION – Many people who have lymphedema have an order for antibiotics on standby, so it’s ready to be filled quickly.
- Worsening LYMPHEDEMA such as swelling, discoloration in your skin, temperature changes, fever/chills, thickening of your skin or unusual scarring, & scratches or bruises that don’t seem to heal.
- DEHYDRATION – Doctors will often prescribe diuretics to rid your body of excess fluid. Monitor yourself for signs of dehydration: dry skin, feeling faint or dizzy especially when you stand up, muscle cramps.
Skin Care – Be Vigilant:
- Be very careful to avoid any skin damage because damaged skin is an easy way to get an infection. Bruising, insect bites, and sunburn are considered skin damage and can put you at risk.
- Clean thoroughly! Yes, between the toes too.
- Use lotion to keep skin free from cracks.
- Use safety equipment! (garden gloves, eye protection, insect repellant, sunscreen, hats, etc.)
- You may want to have a podiatrist do your toenails and TELL THEM YOU HAVE LYMPHEDEMA AND NOT TO DAMAGE YOUR SKIN. My uncle had primary lymphedema and I had to tell the technician who trimmed his toes not to cut his skin. She had never heard of lymphedema!?
Know Your Risks – Talk to Your Doctor
Lastly, I am passionate about increasing the awareness of lymphedema risks and treatments. As someone who has had a breast biopsy and work-up for potential ovarian and uterine cancer, I have seen for myself the lack of attention to this topic. The medical professionals who ordered my invasive surgical testing procedures never once mentioned the risk of developing lymphedema.
Fortunately, I was found to be cancer-free, but for way too many of us, that is not the case. Invasive and potentially damaging procedures often the next steps. I, by no means, intend to downplay the importance of surgery, chemotherapy, and radiology in beating cancer and restoring health. I just feel that a real doctor to patient conversation discussing the risk of developing lymphedema should occur with each person who finds themselves faced with the decision to undergo any of these procedures.
There is More Help
A lymphedema support group can be an invaluable resource for both support and information. The Lymphatic Education and Research Network has an online listing of support groups in California and nationwide.
We at Be Active Be Well are here to support you as well. Please contact us if you are interested in a personalized lymphedema assessment or treatments. We provide in-home assessments in the San Francisco Bay Area. Contact us for a personalized Physical Therapy, Occupational Therapy, or Speech Therapy assessment.
