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Old 11-13-2010, 04:47 AM   #1
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Left kidney pain, no kidney stone: ER won't help

I am a 38 year old female. I started getting kidney stones when I was 17 years old - almost all of which have been in my left kidney. I was in an auto-accident six years ago and injured my upper back and neck, and after trying numerous medications, was placed on methadone for pain by a pain specialist. My highest dose of methadone was 90mg. About 3 months ago, I decided to go off the methadone - it didn't make me pain-free, and I don't like taking narcotics and feeling dopey. I have been weaning off of it and am down to 10mg/day and will be completely off methadone by the end of the month. I don't drink alcohol or use drugs recreationally, and never have.

For six days, I have been suffering from left kidney (flank) pain, which has become progressively more painful. I have also had terrible dizzy spells - to the point that just moving my eyes causes me to feel like the room is whirling, and I am going to pass out (I did lose consciousness once as a result). Two days ago, I started having severe stomach pains
(lower left area near my bellybutton) and I began vomiting and having diarrhea. It started intermittently around 11am, and by 1pm, I was burning up and soaked in sweat, having chest pains, shortness of breath, and throwing up liquid/bile and simultaneously having (liquid) diarrhea (it felt like food poisoning, only I have not been able to eat much since this started, and there was nothing I digested that could have been tainted.) The flank pain and vomiting and diarrhea were so bad that I could barely even call for help. I finally managed to get to my teen's bedroom and ask them to take me to the ER.

By the time I got to the ER, I was screaming from the pain - no matter how hard I tried to breathe and stay calm, I just couldn't - at one point, my boyfriend told me I was begging for help, and saying I wanted to die -something I (thankfully) don't remember. Since then, my family and boyfriend told me that the ER staff were not sympathetic - they said I was told to 'suck it up' and 'shut up' and when I said I was having chest pains and felt like I couldn't breathe, one of them yelled at me that if I could cry I could breathe. Apparently, the ER doctor also said he wasn't going to bother trying to get my pain under control because I take methadone, and 'methadone users have a high tolerance to drugs' - which isn't true in my case (I don't know about other people on methadone, but the few times I have been on pain medication - like when I had to take vicodin after having a tooth pulled, I've never needed an extra high dose, and it has always knocked my pain - and me! - out.) I'm glad I was so far gone from the pain that I didn't recognize their cruelty - no one deserves to be treated like that.

Once they got me to a room, they started an IV, checked my blood and did a CT scan of my abdomin and kidneys and said there was no kidney stone. My white blood cells were elevated. While there, I vomited until nothing was left and then had dry heaves. I also had diarrhea (and had to use a bedpan and be wiped like an infant - a horribly embarassing experience, compounded by the fact that my daughter, her boyfriend, and my boyfriend were there.) They took samples of the diarrhea and my urine, but did not test them: when I was discharged, they were still sitting on the counter in my room, and two days later I have not received any results from the tests - my boyfriend said my urine looked like dark beer and had white flakes in it.) My blood pressure was high (I have had high blood pressure off and on for a few years now), and remained high the entire time I was there. I was told to take ibuprofin and given a prescription for suppositores to prevent vomiting.

When my boyfriend asked why I wasn't being given anything for my pain, the nurse said it was because nothing was wrong with me. He pointed out that clearly *something* was wrong - I was obviously hurting, vomiting and having diarrhea, and the nurse asked if we wanted to talk to the doctor again. I just said no - that it wasn't like we could change his mind, and she shrugged and left.

About a year ago, I had similar symptoms, although no where near as severe as now. I went to the ER (same one as this time), and was told there was nothing wrong with me, when a CT scan showed no stone. I've had similar episodes over the past few years (again, mild compared to this one), all of which eventually went away. I've also had several unpleasant experiences having kidney stones removed going all the way back to my first stone at 17 years old, and as a result, I avoid urologists and going to the ER unless I absolutely have to. I have passed kidney stones with no pain medication (the worst was one in which it felt as though I literally 'squeezed' it out of my urethra), and typically just see a doctor for infections (kidney, bladder, UTI) to get antibiotics.

I am also currently in between primary care doctors - after a doctor botched a minor surgery on my son and we complained, we were both told not to return, and have since been sent letters stating that the medical group is denying us any care.

The ER doctor told me to follow up with my doctor the day after my ER visit, and when I told him I didn't have a doctor, he gave me the name of one. I called several doctors the next day, but none would see me that day, since I was not an established patient (even though I told them the ER doctor said I needed to be seen within 24 hours). The ibuprofin has done *nothing* to ease my flank pain, and if I try to eat, I have horrible stomach pains immediately, with gas and (again) liquid diarrhea. I am also experiencing urinary frequency and discomfort when urinating (this started after I left the ER.) I've tried hot baths, heating pads, ice packs, meditation, anything I can think of to ease some of the pain, and nothing helps. My friends and family keep saying I should go to a different ER and not tell them I am on methadone - they think I would have been treated better if the doctor and nurses didn't know I was taking it - and insist on being treated until they find what is wrong. But, I don't want to lie to the hospital staff, and knowing how I was treated (and having had similar treatment in the past), I am too scared to try again.

In the meantime, I am not able to function or eat, and I am miserable. I am feeling like no one believes me that there is something wrong. I've scoured the internet for my symptoms, but other than seeing that a lot of people have had similar problems (kidney pain, no kidney stone, abdominal pain, dizziness, vomiting, diarrhea, and elevated white blood cell count), I haven't found anything that says, 'this is what is wrong with you'.

I'm sorry this is so long - I'm hoping that these symptoms might sound familiar to someone, or that someone might have some advice on how to get appropriate care or relieve some of the pain I am experiencing.

 
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Old 11-14-2010, 03:19 PM   #2
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Re: Left kidney pain, no kidney stone: ER won't help

Hi! First of all, I am so sorry you are going through this! I, myself, have gone through something similiar so I know how it feels to find no help with doctors, or ER's. I was having similiar symptoms..severe left flank pain, nausea and vomiting. I did notice a common trigger though, it happened when I drank a large amount of fluid in a short period of time. After having a kidney function test, it showed my kidney's were working fine. The only thing it did show was some swelling in the kidney. So the doctor told me, because there were no blockages, and my kidney ultrasounds I have every two years have never showed swelling, that the swelling was probably just a fluke and it was just the way the xray was taken. She told me I was probably constipated. I started to feel like no one believed me (just like you) One day my pain became so bad I went to my primary care doctor, since my urologist didn't seem to want to do anything for me. They decided to do a CT scan which showed a blockage. I had a nephrostomy tube put in recently so my left kidney is draining into a bag. When that procedure was done, they took some additional pictures, they found I also have a cyst at the top of my kidney. A year went by of severe pain, and no one believing me, and finally they found something. I had multiple images of my kidney which showed no blockage or cyst, and turns out I have both. I am not saying this could be what is wrong with you (although you should look into it) but don't give up! Just because one test was negative, or one x-ray showed nothing, don't give up. I felt like no one would ever find out whats wrong with me and they did. I am now scheduled for a daVinci pyeloplasy Dec 6th to correct my obstruction. Check out UPJ obstruction online and read the symptoms. They are reoccurent UTI's, kidney stones, nausea and vomiting. Even if this isn't the answer, I hope this gave you some encouragement to keep going and good luck! I hope you get well soon.

 
Old 11-15-2010, 12:26 AM   #3
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NowAtWitsEnd HB User
Re: Left kidney pain, no kidney stone: ER won't help

Thank you so much for responding. I just can't believe this is happening to me - and that so many other people (from what I've read online) have had similar experiences, with varying outcomes. And the doctors always act like there is no way a CT scan can miss something. I've bookmarked a page detailing UPJ obstruction, and will take that with me when I go to the ER again, so I can try to remember to ask about it.

I wrote this post a little over 24 hours ago, and since then have been miserable. I did call the ER I went to and they said they did check my urine for infection after I left and that it was clear - but it sounds like some bacteria doesn't show during the quick tests, and others don't ever show? I've read folks' experiences with having kidney infections, etc., for months and being told they were fine. When I asked the nurse about my white blood cell count, she said normal range is 4500 to 10,000, and mine is 24,800. She asked if the doctor prescribed anything for pain and infection and when I told her no, sounded really surprised and said I should come back in. But, I don't want to be treated like I'm crazy again.

I know have pain radiating from my left kidney in the back - it literally feels like someone is blowing up a water balloon inside my kidney, like it is going to pop, and my abdomen is definitely more swollen on the left side (although I am very bloated all over) - to the front, all the way down to my bladder and the end of my urethra, this pain is a constant feeling of severe 'pressure' along with frequent spasming and pinching sensations. It hurts soooo bad.

BTW: drinking and eating make the pressure/pain worse. I've always had problems drinking a lot in one sitting - it causes my left kidney to hurt, too.

One thing that I keep wondering about... I've had several stones inside my kidney for very long periods of time, causing pain then bouncing away from the ureters and then going back to the ureters over and over again, and have avoided having them removed. One of my doctors mentioned this can cause scarring and permanent damage - if that happened, is that something that could cause pain?

Also, I read about a disease called medullary sponge disease - that would show up on a CT scan, if I had it, right??

It sounds like you have experienced a lot of the problems I have - you have my sympathy.... thus sucks.

 
Old 11-15-2010, 08:48 AM   #4
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Re: Left kidney pain, no kidney stone: ER won't help

One of the things I forgot to mention is that over the past 40 days or so, I have been really sick with a head cold turned sinus infection. I started off on 7 days of augmentin - which did nothing - and was switched to 30 days of doxycyxline - during which, according to Urgent Care, I caught *another* head cold/virus. I was *just* starting to feel better when this kidney pain episode hit. To add to that, it now appears that at least part of my vomiting and diarrhea were also viral (although, I always vomit and have diarrhea from this type of kidney pain/episode) because everyone in my house is now sick - so I'm guessing we caught a stomach bug...

The reason I mention this is because last year when this happened, it also occured after being sick. And, I've had doctors tell me they think something is wrong with my immune system because I catch *every* bug making the rounds and am sick way longer than everyone else with it. I kind of remember reading about Iga Nepropathy last time this happened, and getting blown off by my PCP, and I just came across it again while doing a web search for kidney pain with no stones, etc.

Does anyone have experience with IGA Nepropathy / Berger's Disease? Does this sound like it?

It's been over a week since the kidney pain started, and still no relief. I am so miserable, and even thoguh I am trying very hard, my spirits are low and I am becoming crabby - which I rarely am....

 
Old 11-17-2010, 08:13 AM   #5
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CyberCrone HB User
Re: Left kidney pain, no kidney stone: ER won't help

Our medical system is a disgrace. You are not alone in your despair. I have nothing helpful to offer, unfortunately, except this: ERs get the dregs, often interns without much experience. You should be seeing a nephrologist NOW, and not wait until you are in a crisis so bad you are forced to go to an ER. Take control, girl.

 
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