Today we will talk about the difference between Lymphedema and normal swelling (Edema). If you missed my first post describing Lymphedema, you can view it here. So, the tricky part about getting diagnosed with lymphedema is the fact that swelling is usually a symptom and not a disorder in it of itself. That’s where edema comes in. Oxford dictionaries describes edema as, “a condition characterized by an excess of watery fluid collecting in the cavities or tissues of the body.” That sounds a lot like Lymphedema, especially if you are not well trained to see the difference. As I talked about in my last article, doctors in the United States only get about 5 minutes of total training that covers the lymphatic system. If a doctor knows much more about swelling as a side effect, Lymphedema is going to continually be missed. Let’s get into our discussion below.
Edema presents as swelling under the skin that is usually located in the arms or legs. It can cause stretched and shiny skin that forms a pit when held in for a few seconds. Some common causes of edema include medication side effects, pregnancy (think swollen ankles), and a diet heavy in salt. These are all relatively easy to find out and fix. Rarer causes of edema include kidney disease, congestive heart failure, cirrhosis, venous insufficiency, and long term protein deficiency. These conditions may not be so fixable, but are still way easier to find than Lymphedema. This is not to say that they are a walk in the park by any means. The main point of edema is to alert that something else is wrong with the body. It serves as a symptom to help doctors locate and find the disease.
Lymphedema presents pretty similarly to edema in it’s early stages. However, the swelling is not a symptom, but part of the condition. Lymphedema is defined as “the buildup of fluid called lymph in the tissues under your skin when something blocks its normal flow. This causes swelling, most commonly in an arm or leg” (Lymphedema Guide). In the United States, Lymphedema is most commonly caused by cancer treatment where the affected lymph node is removed. This interrupts the flow of the entire lymphatic system. The lymphatic system is vital for removing bacteria away from the body and moving your immune system cells to where they need to be. When this flow is blocked or interrupted, people are much more likely to become sick from infections and can die from a simple wound that is unable to heal.
How do doctors diagnose and treat Lymphedema? Well in the United States, most doctors are not aware of Lymphedema. There are definitely CT’s, MRI’s, and other specialty testing available to confirm the diagnoses of Lymphedema. However, if no one suspects the diagnoses in the first place, the tests won’t be ordered. Not to mention the fact that these special tests are only located in research or University Hospitals. A normal hospital will not have the equipment necessary to preform the diagnostic test. Treatment wise, the main things include medical compression garments, lymphatic massages, light exercises, limb wraps, pumps, and Complete Decongestive Therapy. That all poses a problem though, considering Lymphedema Massage Therapists are hard to find here and their schedules are booked. Insurance commonly does not cover the sessions or any of the above mentioned things.
Why is Lymphedema such a hard condition to find? Well a doctor is taught that if they hear hoofbeats, it is a horse, not a zebra. This is referring to the fact that the answer or diagnosis is probably the most common one out of all that it could be. When you are a fellow zebra like me, you do not have the most common diagnosis. In fact, you have one of the rarest, which is why it takes doctors years to diagnose. They are not looking for the “zebras”. This is why Lymphedema is so hard to diagnose. When looking at a theoretical herd of horses and zebras, a doctor will pick the edema horse. They are very similar, but Lymphedema is it’s own disease. That is why hundreds of millions of people in the United States alone are undiagnosed with Lymphedema until it is at a stage where it becomes fatal.
So much needs to be done about the education, access to treatment, and many other things to make Lymphedema a much more treatable/manageable disease. It is a lot to get into today, but rest assured I will continue on talking about Lymphedema. This disease is so underacknowledged and misunderstood, that the key note speaker for a National Surgeon’s Convention recently was Kathy Bates. The same Kathy Bates from ‘Fried Green Tomatoes’. She is educating teams of surgeons, going to Congress, and much more, all because she has Lymphedema. I am amazed at her work, the progress she is making, and the mass amount of awareness she is gaining. However, I find it sad that we as patients are having to educate our doctors. I wish for a day when an average doctor knows more about my condition than I do.
Thank you so much for reading this important article today! What were your thoughts? Do you have Lymphedema? Please subscribe and I’ll see you next time, my Un-imaginables!
“Edema.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 26 Oct. 2017, http://www.mayoclinic.org/diseases-conditions/edema/symptoms-causes/syc-20366493.
“Lymphedema Guide: Causes, Symptoms and Treatment Options.” Drugs.com, http://www.drugs.com/health-guide/lymphedema.html.
“Lymphedema.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 21 Dec. 2017, http://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687.