Massive water retention that shifts and extreme thirst

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Honeybee_100
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 3/3/2009 5:53 PM (GMT -7)   
Hello,
 
I was hoping somebody could let me know if this is a symptom of lupus, if they have any remidies, or if it is likely something unrelated.
 
I have been taking a small diuretic (25 mg of hydrothyrochlorzide) for several years to regulate a bit of a water retention issue.  Initially it was thought to be the result of hormones (5 lb fluctuaion a month)
 
I was diagnosed with lupus about 6 months ago - and the only other medication I am currently take is 150 mg/day of immuran.
 
For the last couple of months, I have been getting puffier and puffier.  Last week I gained 10 pounds (I'm only 113 lbs normally) of water. 
 
The strange thing is that the water weight seems to move around a lot.  Yesterday I had ENORMOUS breasts (An F cup bra didn't even come close to fitting) and my rings wouldn't come off even with soap.  Oddly, my legs were very toned looking, and my abs were flat with a six pack.
 
This morning I wake up, and my rings are so lose I can shake them off my fingers.  My chest is way way down (a D cup), but my stomach is as big as when I was 5 1/2 months pregnant.  My legs and face are also really puffy (my sheets left indents on face and thighs for over 4 hours afteer I got up, and even my baggy sweat pants are leaving bright red rings down the side which last for hours.
 
It's frustrating because my shape changes so dramatically from day to day, and I feel like a gian sausage.
 
I was under the impression water weight was usually just in the hands/feet.  But mine seems to move all over the place.
 
Does anybody else expereince such a massive shifting of water retention, and such a high precentage of body weight gained.
 
I am also extremely thirsty, and drinking about 6 literes a day - but it still won't quench my thirst. 
 
Any suggestions on any tests I should have run, ideas of what is causing it, or an other remidies?  I have already eliminated all salt, processed food and sugar from my diet.
 
Thanks in advance!
 
 

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/3/2009 7:01 PM (GMT -7)   
Honeybee--
Are you diabetic? Have you been tested? Do you have thyroid problems? These problems cause the symptoms you describe in me. No matter how much water I drank, and I drank gallons I was so so thirsty. For me, it was an electrolyte problem, but I would check with your doc. My doc had me drink gatorade when I get like that and it works. I take HCTZ and quit it once and found out it was way way way worse without it, so it does do something for me.

Normally, I have to force myself to drin more than 12 oz ofliquid a day, then some days I'm really thirsty. While everyone thinks drinking water is the best thing for you, and I drink distilled, with no electrolytes, I need to drink other things. Once I start drinking water, I can't stop. I do drink a glass or two if reallly thirsty, but was told to limit my liquids to a fixed amount by a doctor, only because of my particular situation, I'm not advising this because I' also supposed to drink more than I often do.

You should definitely talk to the doc or nurse at the docs about what you can and can't drink and see if they have any suggestions. I do know that once your body readjusts to less liquid, the thirst gets better. Also at that time I did not urinate for three days and wasn't urinating what I should be compared to what I was drinking and had to go to the ER and be cathed twice and puton IV electorlyte fluids once, so it can get serious and they can do things to set you right. It was all because of electrolytes, sometimes they just get mesed up especially because I have somany dietary restrictions on salt, sugar, etc.

Someof the things you describe sound like liver/kidny problems, so I would definitely call the doc and get copies of labs, see if they will do new ones and what you can do.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Honeybee_100
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 3/3/2009 8:06 PM (GMT -7)   

Not diabetic, nor do I have issues with my thyroid.  I have had both checked regularly becuase of my other side effects which have now been attributed to lupus (extreme fatigue, hair loss on my head etc.)

I do have a lot of body hair, but that only sprung up from when I was on the prednisone.  I've been off for 8 months now, and it seems to be going away.

I did have autoimmune hepatitis (enzymes at 1200 and 1800) - but it is better than normal now, and is sitting at around 15.  I still get that checked every week.

It just seems to come out of nowhere, and then moves around.  I feel like a giant marshmellow, but my skin hurts and tingles wherever it is vastly expanded. 

Is that much water retention a symptom of a lupus flare?  Everything else seems to be feeling great at the moment.

 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/4/2009 9:21 AM (GMT -7)   
It could be kidney involvement. That's my only guess.  I'd get in to see your doctor sooner rather than later.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 3/4/2009 11:37 AM (GMT -7)   
I'm not entirely sure about this, but I seem to remember reading something about hydrochlorathiazide and Lupus as not being very compatible.  I'd get in to see  your doctor right away.

diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 3/4/2009 11:41 AM (GMT -7)   
I just looked it up.  Hydrochlorithiazide is a sulfonimide derived drug.  People with Lupus are often sensitive to the sulfonimides - they can trigger flares, etc. 

diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/4/2009 5:34 PM (GMT -7)   
Hi, there are two types of diuretics, one type that is typically usedwith liver conditions, lasix/lactulose, and loop diuretics that work completely differently and are used more with kidney problems (loop of henle), so there is a reason why people are given one over the other. I startedgoing deaf on lasix within a week. It worsened my edema and made me nuts. HCTZ helps the swelling in my case, even though I have liver issues, apparently something else is going on too. You needto be very careful before you try switching that.

You really need to see a hepatologist regarding your low liver enzymes and autoimmune hepatitis. GI docs and rheumatologists are no where near qualified to make judgements about your liver. Liver enzymes go up with inflammation, they drop as fibrosis and cirrhosis set in. The liver makes these enzymes and they are a measure of recent attacks on itself or other organs and whether it is repairing damage. The sickest and most scarred my liver has ever been was when my ALTs were zero. Low ALTs after really high ones are a bad sign, but most docs are too stupid to know this, unless you go to a good hepatologist. THis may actuallybe a sign your liver condition is worsening, because it sure isn't repairing itself with the low levels.

There are several good articles and site about liver disease. I woud wory more about the advil, which is very hepatotoxic and a definite no-no for anyone with liver disease. Even when I had mild liver disease I was not allowed to take it. If you havent had an ultrasound and liver bx recently, or ever, its another good reason to see a good hepatologist. Autoimmune liver disease is relatively rare and it takes a good hapatologist to deal with it and the hepatologist should be clearing all your meds. I would worry much more about the aspirin and advil, and request something less hepatotoxic. The HCTZ is relatively mild compared to that.

The swelling sounds like liver, but I didn't want to scare you, only because it moves around and waxes and wanes so dramatically. Swelling from liver disease is called ascites, and sometimes it needs to be drained as it can cause life threatening complications, though that's when its really bad. I have a great info site with a specific really helpful q&A if you email me I can send you it. It will explain all this and you will see patterns inthe care liver patients receive, dietary concerns. BTW, there was a great article on probiotic yogurt working as well as LASIX/lactulose (The diuretic lasix, not the sugery) for ascites and fluid retention associated with liver disease.

I hope you have a hepatologist and he or she is very good and you are getting the thorough testing and treatment you need. Right now, my alts, which weren't as high as yours recntly, but were high for a while, now came down to 17 and it is because I'm getting fibrosis from the TB meds I'm on, but my other docs were raving they were low and my hepatologist was saying that often happens, which is why so many people wth advanced cirrhosis don't get tx until they have major problems.

Hopefully now your flare is over, the fibrosis will heal, but I would still check with the hepatologist about the swelling. Sorry so long, just in the same boat somewhat.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


elizahm
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/11/2010 7:45 PM (GMT -7)   
Hi.. I have this same exact problem. My weight shifts about every 3 days about 10 pounds or so.. I'll wake up looking think one day then way bigger the next.. and I'm extremely thirsty. I've had pancreatitis and thyroid problems.

reckerdt
New Member


Date Joined Apr 2011
Total Posts : 3
   Posted 4/3/2011 7:45 AM (GMT -7)   
Wow after reading this I am very concerned about myself. I have the same exact problems as honeybee_100 and I have appt the 7th with my regular doctor, I think I will be discussing this. I am so swollen even my breasts are very sore and I had a TAH in 2004 so I know it's not hormone related. Cured4real? can you email me that information on the liver stuff? Thanks in advance.

LittlestarTGSal
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/13/2012 10:57 AM (GMT -7)   
Hello,
     Your symptoms of severe shifts in fluid in different parts of one's body is too familiar. I have gained 8 pounds in one day with only 16 ounces of liquid consumed. Doctors rarely believe this. I often have a shift of 6 pounds in less than 24 hours. I have tried for twelve years to get a "final answer" as to what the etiology of this illess is.
I have a vasculitis component and I think you should consider that. I have an inflammation of blood vessels that causes them to break. I think they break internally and my lymphatics cannot adequately take over and it is a train wreck of fluid and inflammation.
     All Best in your search for health. I'm going to search with renewed vigor!
     Christine
 

XSusanX
New Member


Date Joined Sep 2012
Total Posts : 8
   Posted 9/14/2012 3:19 PM (GMT -7)   
Very similar here. The breast issue was assumed to stem from taking Spironalactone, and the weight was blamed on "cakes and pies." The doctor said nothing when I lost 30 lbs in a month, but always does the cake and pie song and dance when I gain 25 to 30 lb.
I have grown accustomed to fluctuating 30 lbs over time. My feel also feel that stretching/tingling when I swell up. My husband squeezes my feet to alleviate the pain and is amazed when he sees them slowly fill back up. He said I'm like a squishy water balloon.
Dx: Athsma, Antiphospholipid Syndrome, Polycystic Ovarian Syndrome, Arthritis, Hashimoto's Thyroiditis
Daily Meds: Synthroid, Spironalactone, Low Dose Aspirin
Daily Supplements: Vitamin D, Acidolphilus capsules.
As Needed Meds: Provental inhaler, Ibuprofin

LittlestarTGSal
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/14/2012 5:06 PM (GMT -7)   
Yes, I know the squish water balloon sensation and also the tingling. I feel tingling behind my kidneys and tightness across my abdomen. I am determined to find an answer and I hope it is an answer which helps people everywhere NOT just accept that they have large, uncomfortable balloon bodies filled with pain. I know I do not have the genetics for a body like this. I was a nationally ranked triathlete, weighing 113-117 until age 42. I had a car wreck with crushing injuries and have had 15 surgeries to repair liver and put metal in and take metal out. But, my issues were beginning before the wreck.
I also have significant loss of mobility when I swell. I have tested positive for lupus, and have required signs for MS diagnoses but without oligo clonal (sp) bond in spinal tap. I did, however, have some red blood cells and white blood cells in cerebrospinal fluid, and no traumatic puncture.
I believe that vasculitis is the root cause.
I have been self treating w/ Medrol dose pack during flares, and 40 mg furosimide. I am going to insist on wellness and return to Tulane Medical Center to see rheumatologist, neurologist and liver surgeons for a check up since last surgery early May.
My E mail is LittlestarTGSal@aol.com if anyone wants to send stories of swelling, esp. breaking blood vessels.
Wishes for Healing for All
Christine
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