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Q: What can I do when I need to look my best (weddings, special occasions)? Do I take a chance and discontinue wearing my compression garment, or do I wear clothing that covers it up but makes me feel less attractive?
A: First and foremost, your question makes me aware of a most important aspect of living with lymphedema, one's personal sense of overall "quality of life."
If we start our dialogue by looking at the issue from the clinician's perspective, the healthy function of your limb is of paramount importance and will also look its best when well managed on a daily and intensive basis. In my experience, lymphedema in the initial homecare phase, receiving the correct daily balance of compression garments and bandages/ bandage alternatives will continue to stabilize and improve. As such, my advice has always been to invest more effort at this early stage of homecare with the conscious goal of limb stabilization. In time (usually months), a certain amount of liberty or grace can be taken for these special occasions when we all desperately wish to look our best. The "liberty" (wearing no support) I am suggesting has to do with certain factors such as:
Severity - How much reduction occurred during the intensive clinical phase? Was the limb extensively involved? Has the skin regained some of its natural tension or is it still somewhat loose or stretched from the process of decongestion? The more severe the involvement, the less forgiving the limb is when compression is not worn, even for brief periods.
Stability - Is your limb prone to swelling abruptly whenever you take a short break from compression? When you shower, does your limb swell mildly, moderately, or severely? All limbs will become at least mildly involved when compression is not worn, but in time, your limb will stabilize. It is quite important to remain diligent with self-care and avoid rushing the process of removing compression-even for short periods. A mildly involved limb, one that has been treated successfully soon after the onset of lymphedema, will always regain its stability sooner than more severely involved extremities. This fact cannot be understated when deciding to take a day off from compression.
Upper Extremity vs. Lower Extremity - Unfortunately, the leg is in a more "dependent" position most of the day. This means that when we are standing or even seated, the leg is inherently more likely to experience the pressures of gravity and inactivity, where venous blood pressure levels increase. These forces create a less stable environment causing legs to "misbehave," more so than involved arms. The true benefit for involved legs is that they are more easily hidden in dress apparel, although many women would still prefer to wear either sheer compression hose or dress nylons to feel and look their absolute best.
It is important to note that the circular knits (seamless stockings) come in a variety of colors and in lesser compression classes allowing them to be worn over a stronger under-stocking to change the color and appearance of the more structural flat knitted garments. In most cases, it would be preferable to wear these lighter colored stockings instead of nothing since they will slow down the process of fluid accumulation and still provide a very attractive solution.
When the upper extremity is involved, refilling forces can be slowed by careful limb positioning, which essentially means to avoid allowing the arm to hang at the side where gravity is the greatest, or allowing the limb to swing at the side increasing centrifugal force. Unfortunately, arm lymphedema is more difficult to mask, so when compression is avoided, it most likely will be completely "naked" to the environment and the forces of swelling. Try to limit the amount of hours you've gone without compression to a minimum so that the limb is controlled prior to the actual event.
I suggest literally wearing bandages until the last moment, if possible. Then re-wrap for a longer period following the event to bring the limb back into equilibrium.
Q: In regard to clothing choices or apparel, what should I be aware of that could irritate or worsen my lymphedema?
A: The foremost concern for all A: people with lymphedema, when deciding on clothing and apparel must be proper fit. Since compression garments provide a medically correct compression gradient (a gradual decrease in pressure over the length of the limb), any additional layering must be analyzed so that it does not disrupt the gradient.
Common mistakes are:
Although these suggestions may seem to be obvious, it is quite common and understandable for people with lymphedema to fall prey to the desire to wear certain types of apparel due to style preference, and overlook the negative effect of these choices.
For a comprehensive list of resources geared towards larger limbs-some offering additional compression benefits- please see the list compiled by Bonnie Lasinski (see RESOURCE LIST: "When One Size Does Not Fit All") for guidance and assistance navigating products.
Q: My child has LE and also loves to play various sports. Can he play in his thigh stockings? Should they be covered with other clothing or be allowed to contact other surfaces that could increase wear and soiling?
A: First off, I salute you for supporting your son's involvement in normal childhood activities. Having lymphedema should never make a child feel overtly different from his/her peers, and sports involvement is a wonderful way to avoid feeling "disabled" by the condition.
Regarding the garment wear and tear issue, it is most important that the garment be worn correctly and consistently, since the activity will subject the limbs to increased blood flow and lymph formation. Compression is a very necessary counter pressure and the garment must be checked prior to activity for placement on the limb. Shifting and bunching are the limbs worst enemy so adhesive lotion in addition to silicone borders will assist in the process of correct fit during these activities. Additionally, the garment protects the limb from abrasion, which could always increase the risk of infection.
Contact sports such as soccer, football or basketball will subject the garments to stress and accelerate the wear schedule. You may consider dedicating one pair of stockings for wearing only during sports activity, keeping other pairs on reserve for normal school time and daily endeavors. The tradeoff to covering a garment is that it may make your child's appearance more noticeable to others in certain sports where players are dressed differently, and will also contribute to more heat buildup which should be avoided. The only benefit of covering is protection of the garment and must be factored into the decision if the stocking worn is the primary garment for everyday use.
If your child is a swimmer, it is the sole activity that does not require compression garments during activity or competition. The primary reason is less of an issue of compression support provided by the water, but moreover due to the tightening effect of wetted elastic garments. A tighter garment is theoretically beneficial, but practically speaking, may disturb the normal lymphatic circulation and should, therefore, not be worn in a pool.
Lastly, consider sports that are less inherently risky if you notice a great tradeoff in the lymphedema severity following a certain activity. We must consider all the factors-both positive and negative-in the best interests of our children. One sport may be more advantageous than another, allowing the child to thoroughly enjoy the activity while allowing the limb to remain stable and less stressed by excesses.
Steve Norton , CLT-LANA is the clinical director for the Norton School of Lymphatic Therapy in Red Bank, NJ, and an active member of the NLN Medical Advisory Committee.
Please address questions to: Editor c/o NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or e-mail: nln@lymphnet.org. Deadlines for submissions (for the following issue) are: Feb 15, May 15, Aug 15, Nov 15.
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