- What is Lymphedema
- Primary or Secondary Lymphedema
- Treatment
- Signs of Onset
- Signs of Worsening
- What to Do When Lymphedema Worsens
- General Exercise Guidelines
- Compression Garment Guidelines
- Finding Balance: Managing Lymphedema Symptoms
- Things That May Worsen Lymphedema Symptoms
- Things That May Improve Lymphedema Symptoms
What is Lymphedema?
Lymphedema is swelling (edema), most often affecting an arm or a leg, caused by the abnormal accumulation of lymph fluid in the fatty tissues just beneath the skin. It can also occur in the face, neck, chest, breast, abdomen, groin and lung. This condition is chronic and progressive (worsens without proper treatment), and currently there is no cure.
Lymphedema is swelling (edema), most often affecting an arm or a leg, caused by the abnormal accumulation of lymph fluid in the fatty tissues just beneath the skin. It can also occur in the face, neck, chest, breast, abdomen, groin and lung. This condition is chronic and progressive (worsens without proper treatment), and currently there is no cure.
Primary or Secondary Lymphedema
Diagnoses of Lymphedema are characterized as either a primary or secondary.
Primary lymphedema comes from relatively rare conditions that cause alterations (mutations) in the genes responsible for the development of the lymphatic system. The resulting malformations cause the parts of the lymphatic system responsible for draining fluid to not develop properly or not work as they should. Primary lymphedema tends to run in families, although not every child born to someone with the condition will develop it themselves.
In the case of Secondary Lymphedema, injury, scarring or removal of the lymph nodes, is usually the cause. However, less frequently, trauma or chronic infections of the lymph vessel system bring on the condition. In North America, previous radiation and/or surgery of the lymph nodes in the neck, armpit, pelvis or groin – during the treatment of cancers of the breast, uterus, bladder, ovary, prostate or testicles, as well as malignant melanomas, sarcomas and lymphomas – are common causes.
Diagnoses of Lymphedema are characterized as either a primary or secondary.
Primary lymphedema comes from relatively rare conditions that cause alterations (mutations) in the genes responsible for the development of the lymphatic system. The resulting malformations cause the parts of the lymphatic system responsible for draining fluid to not develop properly or not work as they should. Primary lymphedema tends to run in families, although not every child born to someone with the condition will develop it themselves.
In the case of Secondary Lymphedema, injury, scarring or removal of the lymph nodes, is usually the cause. However, less frequently, trauma or chronic infections of the lymph vessel system bring on the condition. In North America, previous radiation and/or surgery of the lymph nodes in the neck, armpit, pelvis or groin – during the treatment of cancers of the breast, uterus, bladder, ovary, prostate or testicles, as well as malignant melanomas, sarcomas and lymphomas – are common causes.
Treatment for Lymphedema
Lymphedema is a serious condition, which indicates that the lymph vessel system is unable to handle the lymph load. As it is a progressive condition, ideally Combined Decongestive Therapy treatment protocols should begin soon after diagnosis. Notably, for Secondary Lymphedema cases it may be prudent to start treatment before diagnosis or the development of symptoms, to prevent swelling from occurring after radiation and/or the removal of lymph nodes.
Lymphedema is a serious condition, which indicates that the lymph vessel system is unable to handle the lymph load. As it is a progressive condition, ideally Combined Decongestive Therapy treatment protocols should begin soon after diagnosis. Notably, for Secondary Lymphedema cases it may be prudent to start treatment before diagnosis or the development of symptoms, to prevent swelling from occurring after radiation and/or the removal of lymph nodes.
Signs of Onset of Lymphedema
- Initially symptoms may come and go
- An increase in the size of the limb
- Tightness or heaviness in the affected area
- Changes to the texture of the skin (i.e. rougher or more dense)
- A feeling of heat or burst of sensation in the limb
- Red patches may indicate infection (see a doctor immediately)
- Puffiness
- Pitting of the skin if pressed
- Aching limb
- Any swelling or heat in the chest on the same side as an operation
- After abdominal surgery, a feeling of tenderness in the groin or bloating in the abdomen
- Swelling in the thigh after removal of or radiation to inguinal or pelvic lymph nodes
- Swelling after exercise
- Inability to see veins, tendons or knuckles that were once visible
- Previously wrinkled skin on affected area appearing smoother
Signs of Worsening Lymphedema
- Any increase in the signs above
- A compression garment becoming too tight
- Pins and needles in the fingers and toes
- Lack of feeling in any area of a limb
- Skin thickening or rough areas
- Leaking areas of skin begin to occur
What to Do When Lymphedema Worsens
- If your limb or the affected area is infected seek medical attention immediately
- Upon noticing an increase your swelling or in the size of the affected area, apply bandages or inelastic garments (e.g. velcro arm sleeve) instead of wearing elastic garment (e.g. stockings)
- Consider temporary changes in your routine to reduce stress
- Book a few MLD treatments to soften the tissues of the affected area and reduce swelling
- Perform Lymphatic Self-Massage more frequently, while doing your best to visualize lymph fluid moving smoothly toward and through healthy lymphatic pathways as you go
- Include Decongestive Exercises and Deep Belly Breathing into your daily routine
- Try to spend as much time as possible in cool and less humid environments
- Consider making temporary changes to ease up or slow down your routine to reduce stress
General Exercise Guidelines
- Exercise is beneficial as long as you are not doing too much. The affected limb or body part shouldn’t ache with tiredness after exercise
- Interval training is best – short periods of one activity, alternated with others
- Wear a compression garment or bandage while exercising to encourage the extra blood flow that results from exercise to move back to the heart
- Listen to your body during exercise and afterwards. If your affected body part is larger or more painful after exercise, you have done too much
- During the summer or in hotter climates ideally, any and all outdoor exercise should be done early in the morning or in evening
- Perform self-massage before and after exercising
- When using weights start with a very light weight and then slowly increase the amount you are lifting in small increments (i.e. ½ or 1lb). Start with 2 sets of 10 reps, and increase to 3 sets of 10 reps maximum with one weight, before choosing a heavier weight. If you notice more swelling after increasing either the weight or number of sets during your workout, return to the previous level where no swelling occurred for the following workout
Compression Garment Guidelines
- Compression garments are measured to fit your limb/affected body part and maintain it at the size it is measured at
- May help your limb/affected body part to feel less dense, but WILL NOT decrease it in size
- Should be replaced every 3-4 months (check with the manufacturer’s guide) or sooner, if the garment begins to feel loose and/or easier to put on. N.B. The garment is of no benefit if it’s too loose
- Consider getting two garments so that one can be washed and one can be worn
- Garments are usually worn daily since a consistency in pressure is necessary to maintain the size of the limb/affected body part
- For Lymphedema prevention, garments can be worn while flying, exercising or performing repetitive and/or strenuous activities
Finding Balance: Managing Lymphedema Symptoms
Preventing and managing lymphedema symptoms, such as swelling, aching and feelings of heaviness, is all about finding balance. If you’re living with lymphedema, achieving fluid balance is much like balancing your finances. When you spend more than you have, you will be in the red. As the equation below illustrates, if the demands on the lymph vessel system outweigh its capacity, then swelling occurs. (N.B. Because the demand on your lymph vessel system is based on the sum total of all your daily activities, you will rarely be able to pinpoint one particular activity as the cause of any new symptoms or increased swelling you experience.)
Demand – Capacity = Degree of Symptoms
For example, if there is a demand of 200ml of fluid/day to be returned to the heart, but only a capacity of 180ml of fluid/day within the lymph vessel system, then 20ml of fluid will be left behind in the affected tissues each day, resulting tissue swelling.
200 – 180 = 20ml of swelling
However, if the demand is reduced OR the capacity increased, the result would be no swelling. For example, with a demand of only is 170ml of fluid/day in the scenario above, there would be a reserve of 10ml.
170 – 180 = -10ml (reserve)
Similarly, if the capacity of the lymph vessel system is increased to 210ml of fluid/day, a 10ml reserve would also be the result.
200 – 210 = -10ml (reserve)
When managing or trying to prevent lymphedema, your aim is to have no additional or new symptoms. Essentially, the goal is to achieve a reserve or have a balance of zero within your lymph vessel system by becoming aware of what makes your symptoms better or worse, and taking steps to balance these factors. Finally, it’s worth noting that managing increased swelling is always easier when it’s a small amount. If the increase in swelling is significant, greater measures are needed to return to balance.
The lists to follow provide an outline of things that may:
Preventing and managing lymphedema symptoms, such as swelling, aching and feelings of heaviness, is all about finding balance. If you’re living with lymphedema, achieving fluid balance is much like balancing your finances. When you spend more than you have, you will be in the red. As the equation below illustrates, if the demands on the lymph vessel system outweigh its capacity, then swelling occurs. (N.B. Because the demand on your lymph vessel system is based on the sum total of all your daily activities, you will rarely be able to pinpoint one particular activity as the cause of any new symptoms or increased swelling you experience.)
Demand – Capacity = Degree of Symptoms
For example, if there is a demand of 200ml of fluid/day to be returned to the heart, but only a capacity of 180ml of fluid/day within the lymph vessel system, then 20ml of fluid will be left behind in the affected tissues each day, resulting tissue swelling.
200 – 180 = 20ml of swelling
However, if the demand is reduced OR the capacity increased, the result would be no swelling. For example, with a demand of only is 170ml of fluid/day in the scenario above, there would be a reserve of 10ml.
170 – 180 = -10ml (reserve)
Similarly, if the capacity of the lymph vessel system is increased to 210ml of fluid/day, a 10ml reserve would also be the result.
200 – 210 = -10ml (reserve)
When managing or trying to prevent lymphedema, your aim is to have no additional or new symptoms. Essentially, the goal is to achieve a reserve or have a balance of zero within your lymph vessel system by becoming aware of what makes your symptoms better or worse, and taking steps to balance these factors. Finally, it’s worth noting that managing increased swelling is always easier when it’s a small amount. If the increase in swelling is significant, greater measures are needed to return to balance.
The lists to follow provide an outline of things that may:
- Trigger or worsen lymphedema symptoms, by increasing the demand on the lymph vessel system; or
- Prevent or improve such symptoms by increasing the capacity of the lymph vessel system.
Things That May Worsen Lymphedema Symptoms (Increase Demand on the Lymphatic System)
- Dry, cracked skin that could allow bacteria into the limb
- Extreme cold
- Hot and humid weather
- Sunburn
- Prolonged exposure to heat (i.e. 15 min. in a hot tub or immersion in water above 102°)
- Cuts, scrapes, & insect bites that become infected
- Punctures (i.e. injections or IV’s)
- Blood pressure being taken on the affected limb
- Change in cabin pressure on airplane flights
- Infections which may lead to increased swelling
- Too much exercise (based on resistance, duration or frequency)
- Being overweight
- Prolonged inactivity
- Tight clothing or jewelry
- Emotional stress, which often causes tightness in the neck and chest, restricting lymphatic return to the area
Things That May Improve Lymphedema Symptoms (Decrease Demand on the Lymphatic System)
- Gradually and routinely building up the duration and intensity of any activity or exercise
- Changing activities frequently to avoid too much repetition for any affected areas (e.g. vacuuming one room at a time, not the whole house)
- Avoiding strenuous activities that you have not prepared for or regularly participate in (i.e. joining a gym and overdoing it on the first day or lifting heavy loads when you are not accustomed to it)
- Self-massage done at the start or end of each day to help the affected area "catch up". It may also be a good idea to do throughout the day to decrease congestion in any areas that are having more difficulty
- Using visualization to stimulate the lymph vessel system
- A consistent skin care regime, including daily use of good moisturizing lotion
- Compression garments to help support the limb return lymph to the heart instead of allowing it to pool in the tissues.