I was looking around on the web because I was diagnosed with LPHS only about a month ago. I thought I’d add my story! I’m only 16, and I’m not really sure if that’s young for this condition but I’ve been suffering from it for 5 years. I had my first kidney stone when I was in 7th grade and from then on, the pain just got worse. I developed more kidney stones but the doctors kept saying they weren’t causing the pain and that I was faking it. Of course, my Mum believed me and I was furious. Doctor after doctor had no cure for me and we were starting to lose hope… Then we moved. I use to live in P.A but in June of this year, 2006, we moved to South Carolina. My pain started getting worse and became chronic. It was so bad, I had to stop going to school and now I’m being homeschooled. Again, we kept going through doctors when finally we met a kidney doctor who said everything I’m feeling sounds like LPHS. We were relieved! My Mum even started to cry! He did a few tests and it turns out that that’s what I have.
I’m put on Blood pressure medicine instead of pain killers because at my age, I couldn’t take a large dose and the largest I was taking wasn’t even working anymore! Amazingly, the blood pressure medicine is working fine. It dulls the pain enough so that I can walk around and not be stuck in bed all day. In January, I’ll be taking another kind of medicine to hopefully mask the pain all together. I’m really excited! 5 years of being in pain and everyone thinking your faking really takes a toll on you!
Anyway, just as an added thing, my doctor said that what is happening with me is that the capsule around the kidney is stretching and that the blood pressure medicine will relax that, or something. I really can’t remember everything he said but maybe, those of you who are taking Pain killers and are finding no relief, should try blood pressure medicine. Everyone is different, so I don’t know if it will work, but my doctor puts his LPHS patients on blood pressure medicine so I’m confident in it.
Ok, I guess I should stop talking because this is getting really long! Thankyou for whoever happens to read this and reply to it!!