Long term edema remains undiagnosed after ruling out most common causes.

[Chanasky]

If a patient has long term generalized edema (pitting in the legs), what are the other possible diagnostic alternatives, after heart, kidney, liver and protein abnormalities have been ruled out? I've been struggling with this edema nonsense for several years, unremitting, and yet my docs are stumped when it come to diagnosis. I also have some GI motility and hormone stuff happening but they claim there's no connection between the two, although I do tend to get rid of excess fluid (through urination), on the rare occasions when my GI system seems to be functioning correctly

I'm 45 yr old male, no diabetes, thyroid usually normal range but flagged as mildly hyper at on few occasions, and low BP. I was very thin prior to the fluid retention, which averages between 20-30 pounds, by my estimation. I was also otherwise very healthy and active prior to these symptoms, but since becoming ill, I am often very fatigued and sleepy most days.

Very confusing, so any input will be appreciated

[Chanasky]

Also, I forgot to mention, I'm not taking any meds aside from .25 mg of Klonopin for sleep and anxiety, which have both become a problem for me since the illness started. It's a very low once per day dose that has no relation to edema, as far as the literature goes

[Chanasky]

I'm fairly sure it's not dietary sodium because my blood pressure is extremely low (often 110/60 and lower) and folks who have problems with retention from sodium are often hypertensive due to the extra fluid in their circulatory system. My edema seems to be a "third spacing" kind (or at least this is what my docs tell me) in that it leaks from vessels into surrounding tissues, which results in low blood volume and pressure. I wind up feeling very dried out and dehydrated, paradoxically, when the edema is at it's worst. Doc says that diuretics would in all likelihood make me even more dehydrated.

Personally, I wouldn't want to start medicating a symptom like this without a diagnosis, since edema isn't a disease itself but rather a sign of some other problem  in the body, often quite serious. At my age, 45, I don't think I should be carrying around 20-30 pounds of extra fluid without some type of explanation. If I were a cardiac patient suffering from a failing heart, I might feel differently, but as it stands at the moment, nobody knows why this has been happening to me for years. It's certainly not normal. My doc  says she's never seen a case like mine in all her 25 years of practice

I've also got some GI stuff and hormone issues happening, which began at the same time as the edema. And my white blood cell count has been elevated as well since this happened to me a few yrs ago (usually in the 13-15,000 range, never lower)  


I've actually read a bit about that lymphedema you speak of. As far as I can tell, based on my reading, the lymphedema wouldn't present with pitting/indents like mine. Could be wrong about this though, obviously I'm not a doctor

Thanks very much for the feedback. I truly appreciate it

[jemma116]

Sometimes when there is a lot of fluid retention and heart and kidney issues have been ruled out, the other thing to consider is your lymphatic system.

Other reasons for fluid retention can be due to side effects from some medications and eating excess amounts of salt and/or sugar.  Your diet has a lot to play with regard to fluid retention.  Cutting down on added salt, and processed foods will help.   Foods that have natural diuretic properties are: celery, coffee, cucumber, dandelion, parsley - you may find more information with regard to foods that  have diuretic properties on the web.

Even though you do have fluid retention, do not think about cutting down on your fluid intake, it does not work like that.  You still need to drink plenty of fluids and water is best.  2 litres per day is usually recommended, more if you are sweating or working out a lot.   Sometimes a doctor or urologist may advise to drink more than that, so do be guided by the advice from your doctor or urologist.

The doctor may be able to prescribe a mild diuretic for you.  You can also purchase herbal diuretic tablets over the counter at your large supermarket store or from the pharmacy.  There are a few different products available, but the one that I know of which is OK for 12 years and over (not for pregnant or nursing mothers) is called Water Balance.  You get 50 tablets in a bottle that you take 2 twice a day after a meal.

Also elevate your legs as much as you can to draw the fluid away from your legs.