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Is it really living with LPHS??
LivingwithLPHS posted:
I have a very rare kidney disorder that causes constant pain in the left flank area. I have been dealing with this since 2008, but was only diagnosed with it in 2010. The pain feels exactly the same as passing a kidney stone, except that it is all the time! If you've had kidney stones, you understand how horrible this is. Also, there is NO CURE!!! I have seen so many doctors, from urologists to nephrologists to pain specialists. The problem is that primary care docs don't want to handle the pain medicine part of it and the pain specialists only want to do consultations and/or get you stabilized on meds and then refer to the primary care docs in a "consult only" basis. I have been to 3 different specialists, only one of which had any idea what LPHS is. One told me that I should convince myself that I am not in pain, do yoga, and smoke marijuana. I tried telling myself that I didn't hurt, but my kidney said BULL@%*$! I have kids at home and I refuse to bring illegal drugs into my home. As far as yoga goes, who can afford to go to a yoga class? Not me!! At one time, I had a doctor that was actually not afraid to give me a dose of methadone that actually made me pain-free and I was able to do all the things that I used to be able to do, (before LPHS). Unfortunately, she had to leave the practice due to family issues, and her supervising physician thought that I was taking too much, (not even knowing what LPHS is) and cut my script by 75%. I need to find a doctor who will actually listen!! Who will research LPHS and help me!!!

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