Living with Edema

Edema is one of the main obvious symptoms I have aside from shortness of breath and it is a literal pain.

I do not remember struggling with it as much as a child as I do now as an adult. I do remember being on “fluid pills” for a small amount of time in elementary school but that was about it. Now that I am an adult it is something I battle everyday.

Most people have experienced edema when they injure a particular body part, go though pregnancy, etc. Edema is a medical term for swelling and retaining fluid. It is commonly referred to as “water weight”.

According to emedicinehealth, “Edema (or Oedema) is the abnormal accumulation of fluid in certain tissues within the body. The accumulation of fluid may be under the skin – usually in dependent areas such as the legs (peripheral edema, or ankle edema), or it may accumulate in the lungs (pulmonary edema).”

What a lot of people do not know or realize is that edema doesn’t just happen in the feet, ankles, and legs. I deal with it in my abdomen, face, and fingers. It makes it difficult for me to find pants that fit well because of the extra weight. I can take one of my fluid pills and lose 5-15lbs in the course of one or two days. Imagine how people look when they drop that kind of weight through diet and exercise, now imagine trying to buy clothes to accommodate the gains and losses of the fluid. It isn’t as easy as saying well today is a good day I can wear these pants. During the course of the day the swelling and fluid that wasn’t there that morning can show up and make it very difficult to be comfortable in the same “normal” pair of pants that fit that morning semi comfortably. One of the things that is very disheartening to deal with when you have swelling in your abdomen is that many people mistake the swelling for a baby bump, having congenital heart defects makes it a very real possibility that I may never have my own children no matter how great the desire is and when people ask how far along I am or if I am pregnant, the sting lasts for a while. It’s a very painful reminder.

The signs, symptoms, and causes are different depending on the kind of edema you suffer from.

From personal experience, if I am standing for long periods of time in one spot or sitting in my chair in my office or on my sofa with my legs dangling, my peripheral edema is worse than if I am up moving around and walking over any given distance. I have not found anything to prevent or reduce the swelling that accumulates in my abdomen.

Another kind of edema that is not frequently talked about that I have always dealt with is swelling in my face at night and in the morning. Normally, when I wake up in the morning my face is a little “fatter” than it is throughout the rest of the day. I’ve found it isn’t as bad if I sleep with at least two pillows under my head and neck to allow me to be somewhat propped up. As the day goes on, the swelling in my face tends to recede and it seems like it goes to other parts of my body to level out.

When struggling with edema it seems like a lot of Doctors do not take into consideration that you are retaining fluid when they talk about your weight. One of the reasons I went for a second opinion is that my first Cardiologist was solely focused on my weight and was convinced that my weight was the reason for all of my problems, I was 7lbs 14oz when I was born; weight isn’t the issue.

This particular Doctor wanted to put me on all sorts of diets (that I couldn’t adhere to due to food allergies) and send me to Cardiac Rehab solely to lose weight. A good portion of the weight he was upset about me carrying around was from edema.

Swelling in my hands and fingers is something that I struggle with almost every day as well, on the bright side- at least I do not have to worry about my wedding rings coming off. When your fingers swell, it is painful on the joints, much like when your knees and ankles are swollen from an injury. When my rings become tight from my fingers bloating up like over cooked sausages it is painful to try and get them off. I believe I am going to look into a different type of wedding band to try!

Many health and fitness sources say you should drink at least 8, 8 oz glasses of water a day or half your body weight in ounces a day. Doctors recommend that if you suffer from edema you should limit your fluid intake which makes things frustrating, it leaves you to question what you should actually do. I have yet to find two Doctors that have the same opinion on the matter.

Let me know how you deal with your edema!

Stay Creative and Battle On,


2 thoughts on “Living with Edema

  1. Wow! I am in awe of your bravery. Don’t take the difficulty of getting pregnant as an impossibility. My grandmother was born with a congenital heart defect that ultimately took her life. She had my mom when she was 26 years old and made it into her early 40’s. It was a choice that she hid from her mom because she forbade her from having kids in her condition. I wouldn’t be here if she had obeyed. Know that whatever you do choose, it is your choice to make. My story is just one side of a very complex issue. Take care of yourself and thank you for sharing your experience.


  2. I also have big swings of fluid. Some days I can’t hardly breathe. I also wear compression socks ever day to keep the fluid from my legs. It’s nothing to have a 10-15lb swing in a couple days. I currently take about 160mg of furosemide (lasik) a day. We have been hoping the dose over the years. I also know that if I’m going to have pizza or something like that with lots of sodium I am going to have a rough few days afterwards. We tried metolazone once. I lost 15 lbs in one day. My face was smaller. I didn’t realize how many places I was holding fluid. But pulling out that much fluid that fast I had full body cramps and passed out a few times. It also dropped my potassium levels down super low. It took me days to recover from that. So we just stick with furosemide now.


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