Is everyone with proteinuria of +1g/day suffering from water retention? Or just CKD with water retention in general.

[Ddd4]

Hi all,

I'm just wondering if most of you with proteinuria of over 1g/day also suffering from water retention? And if so, what's your water retention like?

I'm asking because I was extremely petite (often being assumed as anorexic!), then as I started having proteinuria, I started developing severe swelling from water retention. However my water retention does not leave a dimple when being pressed (non-pitting edema). Now because I was very small in built to start with, even with the swelling, I don't look huge. I have been denied of water retention by several nephrologists I've seen. One even snickered and said "I can't help you if it's just something in your head". It devastated me. I feel hopeless! I would know I have water retention because not only are my extremeties twice the size they were (I measure just to keep records of the progression of swelling, and also clothes that used to be loose become extremely tight!). The swelling gives me really bad joint pain, tightness/burning sensation in extremeties, thinning skin from stretching in size, unknown bad angry bruises!

Are any of you experiencing the similar non pitting edema with no indentation when pressed? If so, are you being denied by your doctor? Anyone that was also really skinny but now with swelling?

[MAS_Nurse]

Hello Ddd4

Sorry to hear that you are suffering and in pain.

I would advise that you return to see your doctor and explain all the symptoms that you have and the measurements you have taken, he will be able to see the bruising. It's possible that there may be another underlying cause which the doctor will investigate.

Our members here will share their experience with you.

Please let us know how you get on.

MAS Nurse & Moderator

[RhenDutchess123]

A gallon is 128 ounces of water....Normally 64 ounces is recommended for people even without Kidney Disease...and with your small size you might be drinking too much water...Ask your Nephologist how many ounces he recommends for you..

Best Wishes and keep us posted

[swimchic]

Hello. I have tons of non-pitting edema, most of my swelling is non-pitting. And while I am losing a lot more protein than you, 8+ a day right now, I can remember back that most of my swelling has always been non-pitting. My doctors have always believed me and I’ve always been on medication for it, but I’ve definitely had them try to indent it and then say it’s not too bad. 🙄

Find another doctor and keep showing your evidence and speaking up for yourself. Make sure you’re doing s low sodium diet too. Sodium makes your body hold onto all that fluid. Best of luck!

[RickHow]

Once again this site has taught me something I never knew. That it is possible to be retaining huge amounts of fluid so that there is swelling you can see with the naked eye, but that it is "non-pitting". However your doctor says there is nothing there. That he see's nothing. I don't think though that just because you have protein in urine this means you have water retention. Protein in urine means the kidney is not filtering out the "correct" amount of protein from the urine. It is letting excess protein escape. Water retention caused by CKD is when the kidney is not able to filter water out of the blood and remains in your system. So protein in urine is the kidney is letting too much filter through it, while water retention is the kidney is not filtering out water.

You are convinced you have water retention while as you say "several" doctors see no evidence. This is difficult to comprehend since the bruising should be obvious to them.

The nurse gives you the right advice. Take your measurements, show him the bruising (even photos of bruising which may clear before your appointment). MANY things can cause water retention. It is interesting you say your clothing does not fit. Generally speaking water retention initially accumulates in the ankles, lower legs, sometimes reaching the abdomen. But yours, to you, seems to be all over. Perhaps also you might consider going to a doctor which is NOT a kidney doctor. One who would be more familiar with other causes not related to the kidney, such as Lipoedema.

[Zazzel]

I have had the same issues though my proteinuria is controlled with Lisinopril. No pitting as well. I wake up most mornings with thin legs, ankles and calves, by evening they were puffy and a bit swollen. My nephrologist did note that my ankles were a little puffy, but said it wasn’t bad enough to put me on a diuretic and that it was better in the morning because things were elevated. Other doctors including the ER doctor did not think they looked puffy or that I was retaining water. Some days it was a painful swollen feeling and I also have neuropathy sensations in my feet and legs though apparently that is more nerve related. Depending on what I eat that day and the day or two before, seems to affect the amount of swelling and pain. I’m sure water quantity does as well though I’ve not specifically taken note of that. I seem to have it pretty much controlled now with my diet though still have an occasional painful day.

My concern for you is what are they doing for your proteinuria? Are you still spilling that quantity and are they doing anything about it?