Understanding Upper Extremity, Non-Cancer Secondary Lymphedema

Trauma and blood clots are common causes of swelling in your arms. Trauma can affect the lymphatic system by breaking or tearing the lymph collectors (the vessels that carry lymph fluid). The elbow and wrist are considered “bottlenecks” of lymph collectors or the lymph nodes themselves. If there is trauma or scarring around the elbow or back of the wrist area, there can be swelling that remains after you’ve healed. The scar or damage can prevent the body from re-routing fluid out of the area and leave it stuck in the skin, causing swelling.

It is possible to get a blood clot in the arm, but it's far less likely to happen than a clot in your leg. A rapid build-up of blood behind the clot will cause swelling. Common symptoms of a clot include rapid swelling, pain, heat and redness. A clot or trauma that leaves lasting swelling in the arm and hand will need treatment similar to regular lymphedema treatment. As a first step, ask your doctor for a referral to a lymphedema therapist. A lymphedema therapist is a highly trained medical professional (usually from physical therapy, occupational therapy, massage therapy or nursing) who can help reduce your swelling and manage your lymphedema.

Before seeing the lymphedema therapist, you should set goals of what do you want to achieve from therapy. This sounds simple, but if you say, “I want to be better,” the next question is, “Better than what?” Setting goals will help develop a successful treatment plan. If you say “I want my arm to be less swollen, so I can fit into my shirts again to go shopping,” that helps you recognize when you are “better.” Goal setting is very important so your therapist understands what better means to you, but also for you to know what you want.

Next, you will start Complete Decongestive Therapy (CDT), which includes Manual Lymph Drainage (MLD), compression, exercises and skin care to reduce your swelling. Using all four parts for your therapy will give you the best results and training to manage your swelling for the long term.

Step 1: MLD is the mild stimulation of the skin (similar to massaging the skin) and specific to you. Your therapist should have specialized training to do it properly with effective results. They will manually (and gently) move the fluid from your swollen area to healthy nodes that will filter it before it’s reabsorbed into the blood stream.

Step 2: Compression starts with bandaging, using a short-stretch compression wrap or bandage, that will help reduce the size of your limb. This compression helps prevent back filling of edema/swelling into your affected area. People often ask why they have to wear compression garments for so long. This is because fluid is moving around your body 24/7, and some fluid is left behind when you are not compressed. Lymphedema wrapping is not like other wrapping, it is specific to your swelling and it is graduated (meaning firmer at the lower end and decreasing firmness as you get closer to the heart). Eventually, you’ll wear medical compression garments instead of wrapping, which are easier to put on and take off. These garments also offer more consistency in maintaining your reduced limb size.

Occasionally, people think the compression garments are supposed to reduce their swelling, but this is not true. Garments are made to maintain your limb size, not make it smaller. Learn more about the benefits of medical compression therapy. It’s important to understand that your treatment is based on your unique swelling. If you have minimal swelling in your limb, you will likely wear mild compression. Your therapist and certified fitter will determine the appropriate size, compression range, style and material with the necessary degree of containment for your medical compression garment. Today’s compression garments are available in a variety of fashion colors and print choices. Spend some time finding the right garment for you.

Step 3: Each person has different needs when it comes to exercise. It is important to stay active in your compression to move the fluid and blood out of your limb. Your therapist may suggest repetitive exercises to increase the joint muscle pump and range of motion. They also may suggest different shoes to help increase fluid and blood flow out of your legs as you walk. Your therapist also will work with you to become independent with your lymphedema self-care. That means you will need range of motion to wrap your extremity and put on or take off your compression garments. Each exercise will meet your needs but also help you reach the goals you set during your initial evaluation.

Step 4: Skin Care is essential since lymphedema is limited only to the skin in almost all cases. That makes taking care of you skin extremely important, as your skin can fill up like a sponge, get stretched out and become fragile and thin on the outer layers. The larger your skin gets, the more likely you are to contract fungal or bacterial infections due to the excess fluid and the body’s limited ability to fight infections in the affected skin area – this can lead to wounds. Cleaning your skin and knowing signs and symptoms of infections are very important, as is keeping your skin soft with lotions. Note that Juzo garments are not affected by any lotions you use.

If you find after two weeks you are not seeing results, sit down with your therapist and discuss your progress or lack thereof. It may be possible there are other issues that are making you swell or slowing your progress. Either way, make sure you are talking with your physician and therapist to determine what is the best course of action and make sure they are talking to each other about your diagnosis, symptoms and treatment.