What Does Lymphedema Feel Like?

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“Bonnie Annis is a breast cancer survivor, diagnosed in 2014 with stage 2b invasive ductal carcinoma with metastasis to the lymph nodes. She is an avid photographer, freelance writer/blogger, wife, mother and grandmother.”

Lymphedema has been one of the greatest challenges I’ve faced since being diagnosed with breast cancer. It didn’t appear immediately after surgery, and I wasn’t expecting to experience it at all. Little did I know that the removal of several little lymph nodes would cause me so much trouble, and little did I understand that it would grow progressively worse over time.

Lymphedema is a condition that can occur whenever the lymphatic system is disrupted. It’s easier to understand if you consider the lymphatic system a super highway that transverses the entire body. That system is a complicated one and includes lymph nodes and lymphatic fluid. The lymph nodes help move lymphatic fluid along like tiny little vehicles. Those little vehicles are strategically placed throughout the body to insure a complete and healthy removal system for impurities. When one or more of the lymph nodes are removed, it can cause a problem. Just like an automobile accident disrupts the flow of traffic, missing lymph nodes cause the normal flow of lymphatic fluid to be impeded. When the fluid can’t flow freely, it backs up and builds up. This usually affects one or more extremities and can also affect the chest area.

In my case, lymphedema began gradually. Doctors found the breast cancer had traveled outside my breast and had entered the lymphatic system. The first symptom I remember feeling was swelling in the arm pit area. At first, I thought it was a side effect from the initial surgery, but learned later it was lymphedema.

Since that first feeling of fullness in my arm pit, about four years ago, the lymphedema has grown progressively worse. Now, instead of only feeling swelling, I also experience pain and heaviness.

The other day, my husband asked what lymphedema feels like. He’d noticed me rubbing my arm pits and upper arms about 5:00 every evening (that’s the time of day when the lymphedema was the most bothersome to me.) At first, he poked fun asking me if I was doing the chicken dance. He said I looked like a chicken with my arms folded in place. I explained I was hurting and folding my arms like that provided easier access to my arm pits. “By rubbing them,” I explained, “I could help move some of the fluid out of that area.” Smiling, he nodded and said, “OK. But what does it really feel like?”

I did my best to find a way to describe the way lymphedema felt to me. He listened as I said, “Imagine your arm is a long, thin water balloon. First thing in the morning, the water starts flowing in and gradually fills the balloon. Throughout the day, as you attempt normal household duties, the fluid increases and the balloon starts to feel a little more full. As the day progresses, the balloon grows larger and larger. The latex of the balloon, which emulates human skin, begins to feel tighter and tighter as the fluid increases. Then, as the balloon becomes so full it can’t hold any more fluid, it begins to feel very heavy and hard to lift. That’s what lymphedema feels like, sort of…”

The only thing my husband could say after the explanation was, “Oh.” I was thankful he wanted to understand. It made me feel better knowing he cared.

Lymphedema is a challenge for me and it is something I will deal with for the rest of my life. There are ways to alleviate the painful swelling and I employ all of them in my daily routine. One of the ways I combat the uncomfortableness of lymphedema is through manual lymphatic drainage. It is a special way of massaging the limbs to help move the lymphatic fluid along and disperse it through the body. Another way I fight the swelling is by using prescription compression sleeves. When donned first thing in the morning, these strong elastic sleeves help keep fluid from building. The most powerful tool in my arsenal is a multi-chambered compression pump prescribed by my oncologist. This pre-programmed pump simulates normal lymphatic drainage by using pneumatic pressure.

Lymphedema may or may not occur immediately following surgery for breast cancer but if lymph nodes are removed, it is a very real possibility. Please pay attention to your arms and upper chest area. If you notice any swelling or feelings of fullness, talk to your doctor. Catching lymphedema early is important. Hopefully you won’t experience the uncomfortable condition of lymphedema but if you do, just remember, lymphedema is better than cancer any day. It is manageable, and you don’t necessarily have to perform a chicken dance.

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