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Old 07-21-2012, 11:58 PM   #1
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Exclamation Chronic Kidney Pain - docs. not supportive

Hello,
I am a newbie here, so please bear with me! I got my first calcium-oxylate stone when I was 16 years old. I will never forget that day. I am now almost 40 and have constant kidney pain. I have had 3 litho surgeries, and now take a so-called preventative med. I have changed my diet, increased water, etc. Still, every 3-4 months I end up in ER in severe pain. I have had enough CT's that I (and most doctors) am weary of doing anymore. My bloodwork and urine usually turns out okay, and nothing shows up on regular ultra sounds and x-rays. It is SO frustrating. Docs have made me feel like a drug seeker at times. I find that Urologists have been the WORST. Very insensitive telling me that most stones don't hurt. I am not crazy. It is a pain you learn to recognize very well. I guess I just need to re-assurance that I am not alone here. Does anyone have any advice? Thanks for listening.

Jen

 
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Old 08-01-2012, 09:59 AM   #2
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Re: Chronic Kidney Pain - docs. not supportive

i am going through the exact same thing! i was told at the ER that my right kidney is deformed and the urologist says im totally fine and acts as if im lying. i have a 10 year history of kidney infections and stones. also have had lithotripsy as well as stents put in my kidneys. the urologist told me if i forget about it that it will probably go away! umm no! he also told me it is possibly a muscle. i agree with you, when you have had kidney issues, you do not forget that pain. it is DEFINENTLY deep inside, not a muscle. i wish you the best of luck!

 
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Old 08-01-2012, 10:04 AM   #3
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Re: Chronic Kidney Pain - docs. not supportive

Ahhhh.....the old "it's a muscle" is a popular diagnosis as well! Sooo frustrating! I just try to be as proactive and knowledgable about it as I can be. It doesn't make me feel good when they try to downplay it tho. It's nice to know I'm not alone. Thanks for that! ��

 
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Old 08-24-2012, 09:24 PM   #4
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Re: Chronic Kidney Pain - docs. not supportive

I am similar with continuous though recent kidney pain (I have a separate thread on this). A good read is from "Carol" in the UK on "living with lion pain hematuria syndrome" if you google it. Somewhat relieving to know that people can work together to find answers and move past doctors thinking its nothing.
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Old 09-20-2012, 08:19 AM   #5
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Re: Chronic Kidney Pain - docs. not supportive

I started having flank pain about 10 years ago. I went to several dr.'s over the years and was told it was everything from back pain to constipation! I finally got lucky with a local dr. that sent me for an ultrasound. From the ultrasound a urologist thought it was a conginital disease. I then went to a urologist got a CT Scan and it was a staghorn stone and I lost my kidney recently because of it. So my advice to you is to go see a urologist. Not an ER urologist, they all act like they are too good to be there and never seem to take care of the problem. Obviously ultrasounds can be completely wrong as well.

 
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Old 09-20-2012, 09:16 AM   #6
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Re: Chronic Kidney Pain - docs. not supportive

Anyone with recurrent calcium based stones should be sure to have their parathyroid hormone level checked! PTH causes calcium to move from the bone to the blood, where the kidneys then try to get rid of the excess and that calcium concentration in the urine causes stones. The calcium concentration in urine can be measured as well as the PTH in the blood. If it is high, it will cause osteoporosis as well as stones. Some people have enlarged, hyperactive parathyroid glands or tiny benign tumors in the parathyroids that secrete the hormone. I would see a nephrologist to check these things and get a bone density test done for a baseline. If PTH is high, treating it may prevent the recurrent stone formation and save your bones.

 
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