Lymphedema 101-A Patient Perspective

Raise your hand if you’ve had this experience. You notice some swelling in your legs or arms, it’s not symmetrical, and your limb gets hard. You go to your primary care physician, and soon you think you are touring all of the specialists in your area trying to figure out what is wrong. Finally, probably about six months down the road if you are truly lucky, you find that one doctor who will decide your fate. “You have lymphedema. There’s no cure, you can only manage it.” 

Alright, so probably at this point several of you are nodding your heads. Misdiagnosis and flat out useless “medical advice” (“well, it is definitely full of something”- no joke, a specialist said this to me), all leading to the inevitable, “This is your life now, I’m sorry.”

So what did you just get diagnosed with? What is lymphedema actually? 

Let’s start from the basics. You have systems all within your body that have certain jobs right? Your lymphatic system is one of these crazy systems that in reality is not as complex or mysterious as doctors make it out to be. Right under your skin you have almost a web of very fragile vessels. They stretch throughout your body, linked together by lymph nodes, collectors, pre-collectors, et cetera. The job of these vessels is to carry all the fluid that is in between your tissues and muscles and organs (interstitial fluid) back up to the heart to get circulated. The lymph nodes, you can think of as little factories, continuing to pump the lymph they get up and through the body. You have major lymph nodes on either side of your neck, under your arms, behind your knees, and in your groin. The pre-collectors and collectors gather up all the interstitial fluid transporting it into the vessels, where you now call it lymph, which carry it to the lymph nodes, which reroute it and eventually it makes its way up to the heart, to get all filtered and go straight back into the body. 

That’s the anatomy lesson, but why is the lymphatic system important? And why is it making such a big deal in your body now? Well, the lymphatic system aids the circulatory system and is a huge component of the immune system. Think of the lymphatic system as your body’s method of recycling and filtering. It helps your circulatory system get all the gross stuff out of the fluid in your body which can cause infection. Surprisingly understudied for how important it seems, right? 

When your lymphatic system is not working properly and you get diagnosed with lymphedema there can be multiple factors at play. Those little vessels you have throughout your body could be tangled, or you could have an absence of them or less than you should. If this is the case, your body isn’t uptaking the lymph fluid and it saturates your tissues, resulting in chronic swelling as your limb fills up with stagnant fluid. This turns into “sludge” of sorts which will result in fibrosis. You could also be lacking in lymph nodes. If this is the case, chances are your vessels probably aren’t up to par either. These scenarios describe primary lymphedema. Primary lymphedema can occur at any stage of life, but it is most likely to occur in women, and in the lower extremity. If you are diagnosed with primary lymphedema younger than two years old, it is considered congenital. Lymphedema praecox occurs around the time of puberty, and then lymphedema tarda shows up around middle-late aged adulthood. Most of the time besides congenital lymphedema, your lymphatic system will in essence “crash” with the influx of hormonal changes that happen at these stages of life. 

Lymphedema is overwhelming. You find out that you have a chronic condition with no cure, and most likely you googled despite the doctor telling you not to, and are now terrified of your future. In reality, while lymphedema at this point does not have a cure, there are things you can do early on to make your life almost as good as it was before your body decided to work against you. First thing that I cannot stress enough. WEAR COMPRESSION GARMENTS. I know it is hot at first and uncomfortable and embarrassing. I promise you, it is hard now but if you start in good compression from the beginning that is the absolute BEST thing you can do for yourself. With compression, your muscles have a force that is resisting its contraction which forces the fluid in your limb upwards in the direction it should go. On top of that, eating clean, anti-inflammatory foods and drinking lots of water will help your body circulate as best you can. Exercise is also critical to living a healthy life with the lymphatic system. You have muscle pumps in your limbs that work to aid in circulation, and the more you activate these pumps, the more help your less than fantastic lymphatic system has in order to keep up with your body’s high demands.

Most importantly. Take a deep breath. Everyday has new challenges but in everyday there are beautiful things. You will become stronger, and learn to know yourself far more than you could have ever imagined. There is good that will come out of this diagnosis. The important thing is to never forget that YOU are in control. ~Written by Patient Advocate, Mary Frances Kastleberg

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