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Lupus patient seeking answers for ongoing nausea, chills, diarrhea, dizziness

I am a 34-year-old woman with a mild case of lupus, diagnosed March 2012 with no major symptoms for the first year and a half post-diagnosis, just occasional arthritis pain.  One night last July I awoke abruptly to debilitating nausea, chills, pounding heart, dizziness, had to run to the bathroom with horrific diarrhea.  I was terrified and wound up in the ER.  The nausea and chills did not subside for a month and I have dealt with episodes of this on and off for 9 months now -- have never really gotten back to normal.  Symptoms do seem to come on or worsen with my menstrual cycle, but also after intense activity (road trips, moving to a new place) or after contact with my toddler niece (who I see a few times a year).  Lupus has been stable, according to blood tests.  I'm curious to know if there's some specific problem I should be considering or if this might be some nonspecific combination of autoimmune response/hormones/infection?
8 Responses
Avatar universal
I should add that symptoms generally come on or worsen at night, too.
8221281 tn?1397574572
What are you taking to manage your Lupus?
Avatar universal
I had not so acute version of what you've described and I ended up with my gallbladder out last week ... Gallstones and inflammation.  I had a trip to ER last year with a clear ultrasound of it, which is what happened to my mom also .. Can have clear scan and still have g bladder problems.... I have mild lupus for a year also, im age 43 presently. Rheumy doc says it's unrelated. But I'm not sure. I do have a family history of gallbladder problems and history of food "sensitivities "... I'm quite health wellness conscious person historically   Id check out that angle. Took my mom about a year of what you describe before they figured it out.
Avatar universal
Oh I forgot to say, lucky me, I've also figured out almost simultaneously, I may well have has a chronic UTI or kidney infection! Both can have fever chills nausea malaise.  I've had dizziness.. And back pain. I don't recall if this was is g bladder or otherwise related  not sure if diarrhea is part of UTI /kidney ... I had a urine test for lupus annual to check kidney function if protein in urine, that was fine but showed likely infection. Lovely. Never had either... I'm a world better without gallbladder already, as was my mom, but still back pain (kidney?) fatigue and malaise. I understand chills and fever or nauseous (?) can be signs of infection. Id get on it, your your best  advocate. Ask docs to check what you want ..
Avatar universal
Oh damn I'm scattered - sorry. One more thing... I should have said this first. Just because all your blood tests are stable and clear does not mean your are immune to lupus flares... My understanding and experience so far is that with a more mild case of lupus our blood tests are normal... Have yours been abnormal before ? The only blood marker for me has only ever been an enormously high ANA. I was diagnosed with that data and classic symptoms.  I take plaquenil which has helped a ton with fatigue.  Even if blood tests were at one point not normal, and they are normal now, doesn't mean what you describe can't be a flare .... We all have some common denominators but triggers and exact patterns and symptoms of flares may be what you need to track. Maybe you've had a series of flares longer term time. Have you backed off your schedule and stress and or activities and increased rest??
Avatar universal
To answer Pantx, I take Plaquenil for lupus, 400 mg/day.  The gallbladder and UTI possibilities were the first things I had checked out, and both tested normal, but perhaps I need to ask my doctors to reconsider those.  My rheumatologist insists none of this has anything to do with the lupus, although of course when I get ANY weird or horrible symptoms I ALWAYS assume it has something to do with the lupus, ha ha.  :)  I've also been wondering about acid reflux/gastrointestinal issues.  I do have GERD and recently found a forum in which people described all of these symptoms to a T and, for them, it was all caused by reflux.  I continue to struggle with the nighttime nausea but am finding that it lessens over time -- the episodes are not nearly as intense.  My gastroenterologist has his own opinion (of course) and thinks I just have a viral infection that won't go away (wouldn't be unheard of).  To answer Blissedout's last question, I'm not always as good as I should be about resting.  I live alone and am self-employed, and I am absolutely a "do everything myself" kind of person, I never stop with the "go go go" and I'm a total insomniac.  When I had the first extreme bout last July, this was 3 weeks after I had finished moving to a new home... by myself (carloads back and forth for 5 days straight, 20 hours/day moving with 4 hours in bed each night, from one 2nd floor apartment to another)... during a very hot and sunny week.  My rheumatologist says flares don't look like this, but I sort of feel like a flare could look like... anything.  Thoughts?  Thank you for your responses, by the way.  It is helpful to talk through this stuff.
Avatar universal
Oh, and I do have a history of UTIs...
434278 tn?1324709825
Your story sounded oh, so familiar.  I woke up one morning with extreme nausea, vertigo, and throwing up.  One of the things wrong with me was my gallbladder was not working.  A HIDA scan revealed that.  There were not any stones.  The second thing that was wrong with me was the ligaments that hold the uterus in place gave way and my uterus was pressing against my ureter causing hydronephrosis - thus the nausea, throwing up, and flank pain.  

I still going through the diagnostic stage of this lupus thing, but I think it is all related to lupus.  

I too think that nausea is very much a part of a lupus flare.  It stands to reason that lupus causes inflammation in the soft tissue in your body, and your colon and intestines would be a common area of inflammation.  And inflammation doesn't always show up in lab work.  

Reflux can also be autoimmune related for some reason.  Up to 50% of lupus patients have acid reflux.
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