Hearing by email from various people who are experiencing symptoms of not only the edema, swelling especially in the abdomen (but not limited to), joint pain, abdominal pain. Shortness of breath is something I recently experienced during an episode of increased fluid. Sharing is important because I thought this was one of the symptoms I had experienced years ago but was uncertain. Someone recently wrote to me that she was experiencing SOB and it may be frightening if you don't understand what is happening to you. It resolved after getting under control with increasing the Dexedrine (or Adderall). She mentioned it affected her eyesight, and I wonder if the strange hemorrhages I had over the past few years are related. They do not know what causes that so I always wonder if it is related to the disorder. Please continue to share on the site to help others. Since I have carpal tunnel symptoms often, due to fluid sitting on herniated discs, it can be difficult to type. Wishing you all receive the help you need so you can live life the way you choose.
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Agreed, my abdomen gets so incredibly swollen and it comes on so quickly it’s absolute misery. I have a separate wardrobe, hard not to when you gain almost 20 pounds of fluid in a matter of days ... fortunately, the medicine has really helped keep the numbers on the scale to a minimum.
The same for me with the disproportionately large stomach. It makes it hard to get dressed some days as you need a certain style and size clothes to go out in the world. Years ago I had someone tell me, "Oh you look so cute pregnant, you popped." I thanked the person (a sales person) and moved on. Sigh. It is not easy but there are longer periods where I am stable so this does not occur as often.
Abdominal swelling is one of the most prominent symptoms for me, and it's something I still struggle with. On days where I retain more fluid than usual, my stomach looks disproportionately large like I am pregnant.
SOB is an SOB… I definitely have shortness of breath when The fluid buildup is getting towards the peak, I’ll have trouble breathing normally. Definitely can’t be scary, I particularly feel it if I’m laying down on my back then the pressure is really on my chest and my breathing feels labored. This is also the time that I’ll feel the most PVCs.