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10948614 tn?1414173719

Can someone please explain cardiac related edema/water retention to me?

I've been walking around for three years with 3+ generalized pitting edema without dx or explanation and am really struggling to find an answer. I've been screened for heart (echo, chest x rays and ekgs reviewed by cardiologist), liver, kidney, thyroid, diabetes, low protein/albumin but nothing shows. BP normal and weight was normal prior to all this insane fluid retention. All of my docs are stumped and it's beginning to frighten/frustrate me.

The edema is everywhere--arms, hands, legs, and chest and is very uniform. If you didn't know I was carrying around any fluid, you'd think I was overweight and quite puffy looking. I can even feel it in the back of my neck when I turn my head.

I also have some recent dx of unspecific colitis and gastritis but the docs say no relation to the edema

I'm trying to rule out all forms of heart failure or heart related type disorders given how strong edema is correlated with heart failure.  I'm starting to doubt that my docs covered everything given how the edema is as present as ever and none of them are offering me a possible explanation.

Does the edema from heart failure tend to present as a generalized full body edema like mine or is it mostly confined to legs and lower body? I'm specifically thinking of edema related to right sided heart failure

5 Responses
Avatar universal
It sure sounds like you have been trying and have been checked for most things that would be related to this type of edema.  If I were you, I would definitely see another doctor and keep trying until you find one that can give you answers.  Do you have any other symptoms?  Any abdominal fluid retention?  Are you on any medications such as Aldactone or Lasix?  Do you know what your ejection fraction showed on your echo?  Have you been seen by an endocrinologist?  You just never know, especially since it sounds like everything else has been ruled out.  It does sound crazy that you have all this and no one can tell you why.  I know you must be so frustrated but keep trying until you find a doctor that loves a challenge.  Sometimes new doctors are more enthusiastic and the education is still fresh in their mind.  Also, you might check with a training hospital or medical school.  Good luck!  Keep me posted if you would.
10948614 tn?1414173719
Thanks for replying. I really appreciate it. Yes, it's been an ongoing nightmare for me. My ejection fraction was excellent. I don't know the specifics but it was "perfect" according to my doctors.

The edema is generalized throughout my body. I can even feel it in the back of my neck, arms and chest area. It just feels like a layer of puffiness everywhere and is very uncomfortable. It only pits in my lower legs, though. I also feel extremely "dried out", almost like dehydration, when the edema is at it's worst, but drinking fluids doesn't help. It almost feels like my vessels are leaky. Nobody can figure out why, though.

Not taking any meds. I won't take any diuretics until the docs can give me at least some idea why this is happening to me. I'm only 46 and I don't think it's normal to be carrying around all this fluid without an explanation

I see that you're a nurse. As a nurse, have you ever heard anyone complain about similar types water retention symptoms (dry mouth, generalized retention, pitting, etc)? If I did have an issue with the heart, would I tend to swell everywhere or just lower body and abdomen?

I should also mention my GI symptoms (colitis and gastritis) seem connected to the edema but docs says they're not related

My docs are completely stumped and I'm at my wits end with this
Avatar universal
hello, I read and am dealing with all the problems you are.  I am 72 now and the problem originally was due to hypothroid but the leg retention was not a real problem with Spirolactone and resting with legs elevated for an hour or two.  My sister is a nurse and she tells me that some people can shed the water in legs only the the "supine" position and that's me.    Please take the meds your doctor says because it is hard on your body and heart to care that much fluid.
I recently had a nervous breakdown and began have A-Fib episodes which can be quite frighten when your heart starts beating 250-300 time a minute.
My situation now is that I now am carrying 6-8-10 lbs of fluid and it is all over my body which (which is new).  I am on bed rest and 40mg Lasix 3 times a day and advised to wear compression hose (oh no !) as soon as i can get them on.  I did notice fluid in my arms, upper chest, abdomen and my legs were just hills and valleys of fluid.
I see you are 46 and things are being to "pop-up" - doctor will tell you to cut out the salt, I am what they call "salt senstive" and should have NONE.  I am very concern since things have suddenly gotten much worse  and the fluid not draining fast enough.  I am scheduled to see my cardiologist and my family doctor advised me to have him move up the appointment and say it is a serious matter.
I carry the gene for kidney and liver disease and I am concern about my kidney-my father passed due to kidney disease.
PLEASE get yourself on the doctor's recommended diuretic, watch the salt and since you had a heart problem GET to a cardiologist.
      from one friend to another don't take chances burdening your heart  
10948614 tn?1414173719
No. I don't have any heart problems that I am aware of at the moment. I was screened for heart issues with an echocardiagram but it was normal. I was screened for all of the usual suspects for pitting edema (heart, liver, kidney disease, protein deficiency) but nothing shows up as abnormal and yet the edema persists. I've been living with the edema for several years and it hasn't gotten worse but it hasn't improved, either. My blood pressure is very low, so I doubt I have an issue with sodium. I don't really consume a whole lot of sodium anyway.

Sorry to hear about your health issues. These chronic health problems are the pits
10948614 tn?1414173719
Oh, also, my docs haven't recommended any diuretics, mainly because they don't know what's causing the fluid retention. With certain conditions, a diuretic could be counterproductive, I believe. My main problem is that I haven't got a diagnosis
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