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Living with Lymphedema

A Guide for You and Your Caregiver




Welcome to the CarePartners Wound Care Team! In the pages of this booklet we will tell you about how we can help you to help your lymphedema and wound. This booklet is full of information to help you to understand what is going on with your body when you have a wound and what your body needs to heal the wound or, if it can’t heal, to feel better.


Sometimes we have to use medical terms, so words in italics and underlined will be defined in the glossary at the end of the booklet. Some information will have web links. This means that there is more information either on the internet or on the CarePartners website. You can either click on the link or go to and click on the Health Information tab.


What is Lymphedema?

Lymphedema is a swelling of a body part, most often an arm or leg, caused by an abnormal build-up of lymph fluid. If you get a wound when you have lymphedema it can be very difficult to heal and you must have the lymphedema treated first.


How would I Know I have Lymphedema?

  • Swelling in the limb,
  • Full, tight or achy feeling in the affected limb,
  • Fluid draining out of the limb,
  • Decreased flexibility in the limb,
  • Visible changes in the skin - skin that remains indented after being pressed,
  • Pain or tingling in the affected limb,
  • Infection - limb feels hot, painful, red, and becomes more swollen, and/or
  • Fatigue.


How did I get Lymphedema?

  • A blockage in the lymph transport system can cause lymphedema. A blockage can result from:
  • Injury or trauma,
  • Surgery in the groin or axilla that damages the lymphatic tissues,
  • Infection after surgery,
  • Radiation,
  • Infections or bites,
  • Obesity,
  • Multiple pregnancies,
  • Sedentary lifestyle,
  • Constrictive clothing or jewelry,
  • Continuous dependent limb position,
  • Recurrent tumor
  • Heavy breast prosthesis, or
  • Birth-defects in the lymphatic system ( this is called primary lymphedema).


Overview of the Lymphatic System


Most people know that we have a system that circulates our blood that includes veins and arteries. But you might be surprised to learn that we also have another circulation system called the ‘lymphatic system’ that carries lymphatic fluid.


This is the system that removes fluid, bacteria, viruses and waste products from our bodies, like dead cells and bacteria. The superficial lymph vessels are just under the skin.


Our body contain about 2 – 4 liters of lymph fluid that is constantly flowing through it. The lymph fluid circulates through the tissues, to the lymph nodes that are often in groups or chains all over the body especially in our throat, groin and arm pits. Then it continues to the heart and to the kidneys where it is cleaned and then is recirculated.


When a lymph node is swollen it is a sign there is inflammation in the body. You may have noticed your neck lymph nodes swelling whenever you have a cold.


When damage has been done to the lymph system, the fluid cannot be drained and the fluid builds up as swelling. If nothing is done, this soft swelling becomes worse and eventually becomes hard and what we call fibrotic. This can lead to a skin infection called cellulitis.


Sometimes you can get repeated infections needing antibiotics or even hospitalization. With each infection the size of the limb does not get down to its previous size and so the limb becomes larger and larger. As it does, the weight of the limb increases and the limb becomes harder to lift; it may become harder to find clothes that fit and harder to exercise.


Stages of Lymphedema

Stage   Characteristics of the Skin
1 Skin is soft and limb size can be reduced with rest and elevation. 
2 Skin is still soft, but swelling does not reduce with rest and elevation.
3 Skin becomes firm and shows no change in size. Dimpling and drying may be apparent. Toes or fingers may be swollen.
4 Skin becomes wart like and has deep creases. It is hard and at risk for infection and wounding



Treatment for Lymphedema


Skin Care

Pay special attention to keeping your skin clean, especially in the creases. Use a non-perfumed pH balanced soap, rinse and dry well without rubbing. Moisturize your skin while still damp using a hypoallergenic lotion or oil like coconut oil. When applying lotion or oil, gently massage from the toes or fingers up the limb.



Lymphedema does not go away, and you will need to be in compression for life, day and night.

Compression comes in many forms. Initially when you are in treatment (reducing the edema or managing wounds) you will have bandaging. You may need the bandages for a few months. When the edema has stabilized, you may be ready for a sleeve or stockings, or a Velcro closing type of garment. Some of these garments have a liner under them, others have a padded sleeve. Some people find it easier to work or move through the day with a sleeve or stockings, then these are removed, and a softer garment is worn for nighttime.


Manual Lymphatic Drainage (MLD)

There is a special type of massage that can be used by specially trained massage therapists on the superficial lymph vessels to move fluid. This very light sweeping action, called manual lymph drainage (MLD), can also help to move fluid past a blockage by establishing a new route. The massage therapists will apply bandaging after the treatment to encourage the fluid they have moved to stay out of the limb. This MLD is a type of massage and is therefore often covered by your private insurance plan if you have one. Think about having someone in your family learn some of the techniques as some of the therapists are willing to teach some of the basic strokes to caregivers.


Assistive Devices Program - Ontario

The Government has a program that assists with the ongoing cost of compression management. This is called Assistive Devices Program – ADP. There is a process to go through to get this coverage:


  1. Your family doctor needs to arrange an appointment for you with a specialist (a doctor authorized by ADP) for a lymphedema assessment. You need to take the ADP forms with you to this appointment.
  2. Once the specialist has signed to say you have lymphedema, you then need these forms to be signed by an ‘ADP authorizer’. This person will help decide what type of garments would suit you best.
  3. Then you sign the forms and take them to an ‘ADP authorized fitter’ to be measured for the garment. The fitter will keep the papers as they need to be mailed to the government for you to get reimbursed. The fitter will get you to sign the papers again.
  4.  ADP covers 75% of the cost of the garments so you will have to pay the remaining cost. If you are on ODSB, they will cover that 25%. If you have insurance, they will often cover that 25%.
  5.  ADP will allow up to 6 pair of compression devices per year. This is so you will be able to wash a pair and wear another. Sometimes your size will change, and you need to be remeasured. Garments are guaranteed for 6 months of daily wear, then the compression may be stretched out of them and they won’t do their job, so they need to be replaced so they will continue to prevent the swelling.


Pain Management for Lymphedema

Many people find that pain is reduced as the edema is reduced. Generally analgesics such as ibuprofen, acetaminophen and ASA are effective. Elevation of the limb and relaxation may also help. Sometimes stretching and yoga will reduce the tightness causing the pain. If the pain is sharp, stabbing, burning, or tingling, the pain may be nerve related and you should discuss whether you should take a medication for nerve pain with your family doctor. 


Coping with Lymphedema

  • Become informed. Learn what you can do to help manage your lymphedema. Check health related websites, talk to your health care team.
  • Understand your feelings. It is not your fault. Recognize your emotions and talk to your health care providers, family and friends.
  • Coping with changes to your body. Lymphedema does not define you but you may need to make some adjustments to accommodate the changes in your body. Communicate with your partner about how you feel about intimacy. Get some assistance from a friend or family member to help choose appropriate clothing.
  • Coping with changes in daily life. Consider modifying activities you enjoy. Share with others what your limits are. Alter your home or work commitments. Explain to your family and friends what lymphedema is as many people are unaware and need more information to understand.
  • Take action. YOU are essential to the success of your treatment and self-care. Each small improvement helps to preserve your quality of life.
  • Rely on Support. Ask your loved ones to help you with tasks such as with bandaging, massage and household chores. They may not know what to do to help you so don’t be shy in asking. Find a support group, or maybe an on-line group. 



Things I can do to Help me Live with Lymphedema

Complete this with your nurse. Check off as many of the things you think you can try to do to help keep yourself healthy.


I will Try These ….

❍ I will wear my compression wraps or garments as suggested by my health care professional.

❍ I will try to maintain a healthy weight.

❍ If OK with my doctor or nurse, I will start a regular stretching or yoga program _____ x week for _____minutes each day.

❍ I will use pH balanced soap, rinse well and pat my skin dry.

❍ I will moisturize daily after my bath or shower.

❍ I will make sure any infections are treated quickly. At the first sign of an infection I will contact my doctor.

❍ I will cover my skin and protect it from heat, from too much sun and from cold.

❍ I will learn how to wrap my limb as demonstrated by my nurse or other health professional.

❍ I will wear loose clothing.

❍ I will elevate my limb with lymphedema at night.

❍ I will make sure that blood for blood tests is only taken from a limb that does NOT have lymphedema.

❍ I will talk to my family and let them know about my condition and how they can assist me.

❍ I will ask for assistance with heavy lifting.

❍ I will find out about support groups for people living with lymphedema and think about joining. 



But First … Let’s Check in!

Sometimes a list of tasks can seem easy to do and because of that we can easily over commit. Look through the list and really think about the tasks you committed to. Ask yourself these questions;

  • Do these activities fit with my day to day activities?
  • Barriers are things that stand in the way of you being able to complete an objective. Can you think of any barriers that might prevent you from accomplishing them? An example might be I do not have someone to help me lift heavy items.
  • Some of the barriers that prevent me from doing these things are: 
  • How can I overcome these barriers?
  • How confident am I that I can complete the tasks (0 is not confident at all and 10 is super confident)? 0 1 2 3 4 5 6 7 8 9 10

If your confidence score is less than 7, you might want to consider removing a ✓ mark or two. If your score is 7 or higher – give it a try!

After 2 weeks of trying to do these things reassess the list using the same process and if you feel confident enough, add a new task or two. Choose the tasks that are most important to you and you are most confident that you can complete. Remember - you do not need to accomplish this all on the first day – this is a journey! 


What is a Wound?

A wound is any break in your skin. Sometimes wounds are called ulcers. The two words mean the same thing. There are many causes of wounds. Sometimes they are hard to heal. Your nurse or doctor will help you to know the type and cause of your wound and why it is having trouble healing.

Treatment may include helping you to improve your nutrition, increasing your mobility and activity, removing sources of pressure or friction, addressing specific conditions such as diabetes, improving your blood flow and helping you to reduce the risk of you getting an infection or treating the infection if one is present.


To help your wound heal you may need to change some of your activities and habits.


If you smoke, you will need to consider quitting or if you have diabetes you will need to really follow your diet and monitor your blood sugars. More about that later.


What is Wound Care?

Wound care includes all the activities of managing your wound including what you and your nurse will do to help your wound heal. The nurse will assess you and your wound to determine if your body is ready to heal and will apply dressings to support your wound. Your nurse may need to take pictures of your wound. They will ask you to consent to this.


Wound care also includes teaching you to be as independent as possible with your wound care.


At each visit your nurse will assess your wound to see how it is doing. Different kinds of wounds need different kinds of treatments and dressings. These may change over time. Your nurse may need to contact your doctor or other health professionals to discuss your wound or to get you a special referral if needed.


Sometimes your body is ready for healing and your wound needs minimal support. This is called a healable wound.


Sometimes your body needs specific things to heal your wound like special medication or devices. This is called a maintenance wound and in this case your nurse will discuss with you what needs to change or what you need to do to help your wound to heal.


Sometimes your body is unable to heal your wound. This is called a non- healable wound. In this case your nurse will help you to learn how to manage the symptoms you are experiencing to ensure that you are more comfortable and to reduce the risk of infection. 



What do I need to Know about Wound Dressings?

Keeping a wound covered helps to prevent infection and promotes healing. You should always have a dressing on your wound.


Wounds should not be left open to the air to “breathe”. We don’t breathe through our skin! Oxygen is carried in our blood and gets to the wound by the blood. Normally we don’t allow wounds to dry out and form a scab because when this happens, the wound takes longer to heal, is much more painful, there is more scarring, and there is a greater risk for infection.


If your wound is healable the nurse will use a dressing that can stay on for several days, in some cases, for a week or more. This may sound surprising, and if you have come from the hospital where dressings were changed every day it might worry you. Don’t worry! Now that you are home or receiving care at the clinic the kinds of dressings that will be used may be different than in the hospital. Think of them as a blister that is allowing your wound to heal underneath while at the same time protecting it from germs and trauma.


You may be surprised to see how moist the wound is under the dressing. We want it to be moist, like the inside of your eye. This kind of moisture allows the new skin to grow and your wound to heal more quickly. Sometimes your wound will have dead tissue like a wet or dry scab in it. This dead tissue is a barrier to healing and must be removed. Your nurse will use dressings to get rid of the dead tissue. This is called autolytic debridement. During this process you will notice some things that may concern you. Don’t worry, these are all normal and part of the process but if at any time you are worried talk to your nurse. You may notice:

  • Increased drainage
  • Odor when the dressing is removed; it should go away when the wound is cleaned
  • The wound may look larger


Once the dead tissue is removed from your wound it should look moist, pink and slightly bumpy. This means it is ready to grow the new tissue it needs to heal.


If your nurse has determined that your wound cannot heal then they will not encourage autolytic debridement and the dressings will be different. They may use dressings that can be changed more often and that do allow the wound to dry out. Your nurse may paint antiseptic on the wound to help reduce the risk for infection. In both cases your nurse may teach you how to change your dressings. They will show you exactly what to do, order your supplies and check in with you on a regular basis to see how you are doing. Refer to the section called “How to Change my Dressing”.


Will my Wound be Painful?

Sometimes wounds hurt. Pain can interfere with your daily activities, reduce your 
appetite and make it hard to sleep. It can even slow the healing process. Most pain 
can be treated effectively with medication or other therapy.


If you have pain from your wound talk to your nurse so that they can suggest 
medications or other therapy to reduce your pain. They may need to contact your 
doctor for a prescription. 


You will be asked to rate the intensity of your pain with 1 being the least painful or no pain and 10 being the worst pain you have ever experienced. Your pain rating will 
change, and pain should decrease with the right dressing and as your wound heals.

Your nurse will want to know the answer to the following questions:

  • When does the wound hurt?
  • Rate your pain on a scale of 1-10.
  • What makes your pain feel worse?
  • What makes it feel better?
  • The medication I will take for my wound pain is:
  • I take it every ____ hours.
  • Side effects I need to be aware of are:


If your doctor prescribes medication for your pain, please take it as prescribed. Sometimes people stop taking their medications because they feel better, but the reason they were feeling better is they were taking their pain medication! Follow the instructions; don’t take the medication more often than prescribed.


If you aren’t taking pain medications on a regular schedule, have pain medication available that you can take when you need it. If your dressing changes are painful, take your pain medicine about an hour before you are going to have your dressing changed so that it has a chance to get working. As your wound healing progresses you may be able to reduce your pain medications. Talk to your nurse about this


Is my Wound at Risk for Infection?

It is very important to prevent yourwound from developing an infection.


There are many ways to reduce the risk of infection. Your nurse will teach you how:

  • To perform hand hygiene by washing your hands or using alcohol based hand rub before and after you do your dressing
  • To keep your dressing supplies in a clean container and away from pets


Your nurse has been trained to recognize the signs of infection. Some kinds of wound infection are called Superficial Infections.


This means that the germs are only on the surface of the wound. They won’t make you sick, but they can slow wound healing. You may see an increase in drainage, odour, pain or some redness around the wound, but you won’t have chills or fever because of it.


Superficial infection is managed with specialized antimicrobial dressings. Your nurse may decide to use one of these if they think your wound needs it. Your nurse will not take a swab when they determine that you have a superficial infection as swabs do not tell us if the wound is infected. We don’t use antibiotics for superficial infections.


Another, more serious kind of infection, is called Deep Tissue Infection. In this case the germs have spread to your body and are making you sick.


You may see redness and swelling spreading beyond the wound. The pain may increase, and you might have a temperature or have chills. This kind of infection needs a prescription for antibiotics. Your nurse will take a swab if they think that you have a Deep Tissue Infection so that your doctor will know what antibiotics will be effective. If you are given antibiotics be sure to take them as prescribed and finish them.


If you think you have Deep Tissue Infection you should see your doctor right away or go to the nearest Hospital Emergency


Can I Shower or Bath?

  • Bathing is not usually permitted when you have a wound because it is not good for the wound to soak in your bath water. You may need to have a “sink bath” while your wound is healing,
  • There are two kinds of dressings – some dressings must be protected from water and some dressings are waterproof. Be sure to check with your nurse or doctor about what kind of dressing you have,
  • If your nurse or doctors says it is ok, you can take the dressing off and shower,
  • If you are permitted to shower, use a handheld shower, if you have one. Gently spray water from the top to the bottom of the wound allowing clean water to run over it,
  • Do not use soap, shower gel, body lotion, talcum powder or other bathing products directly on your healing wound and do not rub the area as this might be painful and could delay healing,
  • Swimming is usually not allowed with dressings, however if you have a waterproof dressing it may be ok. Again, check in with your nurse or doctor.


How Does What I Eat and Drink Affect My Wound?

Wound healing requires good nutrition. Your body needs extra protein and vitamins and minerals to heal. 


Here are Some General Guidelines to Consider:

  • Don’t try to lose weight when you have a wound to heal
  • Try to eat a variety of foods following Canada’s Food Guide 
  • Don’t skip meals
  • Your body needs fluids. Try to drink 6-8 glasses of water or other fluids per day. Drinks with caffeine can cause you to lose fluids, so do not count them in your total
  • If you have been told to limit your fluid intake by your doctor, be sure you follow those instructions
  • If you are on a restricted diet for some other reason it could be hard to get all your nutrients. Consult a dietician or a nutritionist for more information
  • If you don’t feel hungry try to eat smaller meals more frequently
  • Weigh yourself once a week. If you are losing weight you may have trouble healing your wound so contact your doctor
  • Take a multivitamin
  • If you find it hard to eat a balanced diet, try a protein shake or buy a food supplement. There are some recipes in our Nutrition Guide.

Here are Some Examples of Nutrients in Foods:

Discuss these with your nurse. Identify the foods you will try to eat more often:


Why Should I Stop Smoking or Vaping When I have a Wound?


Wounds must have oxygen to heal. We get oxygen when we breathe air in. If we have heart or lung disease the oxygen we breathe in cannot get to the wound. Smoking tobacco in any form can prevent your wound from getting the oxygen it needs. This is especially true if your wound is on your leg or foot or you have diabetes or heart disease.


It is estimated that one cigarette decreases the amount of oxygen in your blood for 1 hour. If you smoke a cigarette every waking hour, then all day you have reduced oxygen just from smoking.


We know that asking you to stop smoking is a really big deal. If you think you can or if you want help, check out the following resource: Government of Ontario Support to Quit Smoking 


If you can’t quit, then consider trying to reduce the number of tobacco products you use in a day or maybe limit the time of day you smoke to after supper. Any tricks you can use to lower the amount you smoke will make a difference.


E-cigarettes and vaping (including marijuana) also have an impact on wound healing because they contain many of the same chemicals that are in cigarettes. Consider trying to reduce your use of e-cigarettes or vaping whenever possible.


Second hand smoke (the smoke from someone else smoking) can contain as many harmful ingredients as smoking and will affect your healing. If someone in your house smokes, ask them to try to go outside away from open windows. If they smoke in the garage, use a fan to blow smoke toward the outside.


Second hand smoke is unhealthy for the nurses caring for your wound too. Never smoke when your nurse is in your home.


How Can I Avoid Trauma to My Wound?

Trauma can be anything that causes harm or injury to the area of the wound. Try to avoid:

  • Tight fitting shoes if the wound is on your foot or toes,
  • Bumping your leg on furniture or car doors if the wound is on your leg
  • Wearing a tight belt or tight clothes if the wound is on your abdomen
  • Pets and kids bumping you or jumping on you and hitting your wound.

Wounds can be easily damaged. Take care of your wound by protecting it from trauma.


How to Change My Dressing

You may be asked to pick up or to purchase a few items for the nurse to use when doing your wound care and to keep these items clean. Our nurse will provide you with sterile instruments. This may include forceps, scissors and a probe. Be sure that you or your nurse only use these instruments for your dressings.


Your nurse will show you how to change your dressing and tell you how long to keep the dressing on between dressing changes. They will recommend specific products.


6 Steps to Change Your Dressing

  1. Prepare the area in which you will do the dressing change
  2. Gather your supplies
  3. Remove the old dressing
  4. Cleanse the wound
  5. Apply new dressing
  6. Cleanse your equipment

Prepare the area

You will need a clean spot to do your care with good lighting. Remove kids and pets from the area.


Check off the supplies you need

❍ Alcohol based hand cleaner for your hands

❍ Adhesive remover

❍ Gauze pads

❍ Sterile normal saline

❍ No sting barrier film nor skin prep

❍ Tape

❍ Plastic sealable trash bag

❍ Clean towel to absorb spills

❍ Forceps and scissors if needed

❍ Dressings 


Remove the Old Dressing

  1. Clean your hands with soap & water or an alcohol-based hand rub.
  2. Slowly lift the corners or edge of dressings, if it is sticky use the adhesive remover to loosen.
  3. Hold down the skin and pull tape across the skin rather than pulling. If you have an adhesive dressing anchor the dressing with one hand and stretch it away from the wound to loosen it. Do not tear your skin.
  4. Throw away the used dressings in plastic bag.
  5. Clean your hands again


Clean the Wound

  1. Place a towel under the wound.
  2. Cleanse the wound with the saline the way your nurse showed you.
  3. Use gauze to blot the surrounding skin around the wound.
  4. Discard used gauze into the plastic bag.
  5. Check the wound for redness, drainage, swelling or odour. 


Apply New Dressing

  1. Open new dressing & remove from the package. Only touch the corners.
  2. Apply skin barrier or skin prep to the skin around the wound.
  3. Center dressing over wound.
  4. Secure with tape or, if the dressing is adhesive, smooth out the adhesive borders.
  5. Discard packaging into plastic bag and seal the bag.
  6. Clean your hands.
  7. Put the plastic garbage bag in a larger garbage bag for disposal with your regular household garbage.


How to Clean my Equipment

Each time after a wound care is completed, follow these directions to clean the instruments:

  1. Fill a clean bowl with warm water and add dish soap,
  2. Wash each instrument in the warm water removing anything visible,
  3. Rinse the instruments under the tap with warm running water,
  4. Lay instruments on a clean towel or paper towel and air dry them,
  5. Once the instruments are completely dry, put them in a clean, plastic container with a lid or a clean, sealable plastic bag,
  6. Close the lid of the container or seal the bag,
  7. When it is time to do your wound care, remove the instruments from the container or bag and complete your wound care,
  8. Repeat the cleaning procedure each time wound care is completed,
  9. Once the wound is closed and no more wound care is required, safely dispose of the instruments.


When to Call my Nurse

Call your nurse if any of the following occur:

  1. Increased pain at wound site
  2. Redness or swelling around wound or spreading out from the wound
  3. Warmth around the wound site
  4. Foul odor from wound after you have cleaned it
  5. Change in colour or amount of drainage
  6. Fever, chill or nausea


I am Ready for Discharge: What Do I Need to Know?

There will come a time when you and your nurse agree that it is time to discharge you from nursing services because your wound is closed or because you now have all the skill you need to look after it yourself.
There is still a lot going on under the surface. It can take up to 2 years for your wounded area to get back its strength. Even then it won’t be as strong as it was before your injury because the new tissue is scar tissue and doesn’t have all the characteristics of uninjured skin.
Always protect the area from pressure, trauma and other forms of injury.
If you have stopped or reduced smoking keep doing it!!!


Glossary of Terms

Antimicrobial dressings: are used to reduce the number of micro-organisms in the wound which reduces the risk of infection.

Autolytic debridement: uses the body's own enzymes and moisture to re-hydrate, soften and finally liquefy hard eschar (scab) and slough (wet dead tissue) in the wound. Only dead tissue is liquefied. It is virtually painless for the patient.

Conservative sharps debridement: conservative sharp wound debridement (CSWD) is the removal of loose avascular tissue without pain or bleeding.

Deep tissue infection: infection in a wound that has reached the deeper layers of the body. A deep infection means that the whole body is infected, not just the wound and oral or IV antibiotics are needed for healing.

Germs: microorganism, especially one that causes disease.

Hand hygiene: cleaning hands to remove soil, dirt, and germs. If water and soap are not available, hands can be cleaned with alcohol based hand rub.

Healable wound: a wound that is ready to heal and all the patient factors make it able to heal; these factors include circulation, diet, devices etc.

Maintenance wound: a wound where healing has stalled due to factors that need to be corrected such as blood sugars in the person with diabetes or the purchase of specific equipment or perhaps remedial surgery.

Non-healable wound: a wound that cannot heal due to factors that cannot be corrected such as poor circulation.

Superficial infection: A wound infection that is localized to just the wound. The body is not infected and the patient does not need systemic antibiotics to heal.

Swab: a test that the nurse can perform by touching a special cotton tip applicator to a cleaned wound and then sending the applicator to a laboratory to see what microorganisms grow. The results from a swab tell the doctor what kinds microorganisms are growing on the wound and what antibiotics might work to treat infection