Jump to content
IGNORED

Idiopathic Cyclic Edema - Water weight - Fluid retention


snarkykitty

Recommended Posts

I am going out on a limb here. I figured that since there are so many people who belong to this community, that I just might get a "hit".

Does anyone here have Idiopathic Cyclic Edema? Basically, you "gain" and "lose" large amounts of weight very suddenly, without a solid reason. Fluid accumulates very quickly, as in 5-7 pounds over the course of a day (morning to evening), and even 10-15 pounds overnight or in a few days' time, and even up to 35 pounds in a couple of weeks, regardless of food intake/exercise. Fluid retention occurs mostly in the torso (abdomen, breasts, hips), face, and sometimes fingers. Weight fluctuations occur unexpectedly, but possible triggers include heat, exercise, standing for long periods of time and there's a theory that the fluid is caused by non-blood fluids leaking from the capillaries into surrounding tissue.

Along with the swelling (which makes your skin feel very stretched out), there can be overall achiness, stiffness, and depression. If you wear glasses, you might feel like they are suddenly tight. Even the loosest fabrics can cause "fabric marks" and indentations in the skin. The body shape resembles a box on stilts (legs).

This isn't just "feeing bloated", though sometimes it *feels* like the worst PMS you have ever had. A flareup can last a few days, to weeks and even years, then disappear just as suddenly as it began. Diuretics may make you feel better for a single day, but they don't work on long term basis, and usage may cause "rebound" edema.

This edema is not caused by kidney, heart, or other organ disease. Electrolytes (sodium, potassium) are normal. In other words, it's not from "too much salt" or "not enough water". It is not body fat or gaining true weight. It tends to occur in women under the age of 50.

Does this sound like you or anyone you know? 

Link to comment
Share on other sites

  • 2 months later...

@snarkykitty I know this is no help at all, but I initially read this as idiopathic cyclic enema and I was really confused lol. 

I'm an (obnoxiously curious, omg what is this thing I have to look this up asap) RN and I've actually never heard of this. Interesting, although it sounds super frustrating.

Now that I think about it, I think I cared for a woman who had idiopathic lymphedema -- different, but slightly similar to idiopathic cyclic edema. She was post op for liposuction, which is actually used to treat some patients with lymphedema. Crazy. 

Link to comment
Share on other sites

  • 9 months later...

I have this - blood pressure, all bloodwork, kidneys and heart are are all fine. I regularly can be up 10-20 pounds in a day. Sometimes I get to where I pee out all the fluid and lose that much. I get the indentations from clothes sometimes can’t wear things I could wear fine the day before. Legs and hands swell - right now feet swollen and hands swollen as well as body and nothing fits. 

Worse in the heat and worse if I’ve been on my feet a lot. I’m wondering if hereditary somewhat as my Dad ha similar and so did his mom and sister. My dad is more leg specific. He was all “oh you’ve  just inherited the ____ legs” and advised me to elevate legs for 2 hours before bed every night. That can help some but not totally plus we have children and sitting in an easy chair with legs up for 2 hours probably isn’t realistic. I did it tonight though and still swollen.

Link to comment
Share on other sites

I can relate to this (although no diagnosis) and for me, there can be a connection with some medications (specifically anti-inflammatories such as Aleve or Ibuprofen).  And over the last couple of years, I feel this sort of thing most in my fingers first 

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.



×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.