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!!
My name is Joy and at 39 my life is far from a joy. Amoung a multitude of other health issues, about three years ago I began to have blood in my urine and a nagging constant pain in my right loin region. I was sent to many specialist and endured many tests to no avail. Having a history of major depression and bipolar many of the doctors seemed to allow themselves to write it all off as an extension those somehow. I was tired of being in pain, I was scared everytime I went to the bathroom and saw the blood and wondered why with such an objective symptom the doctors could possibly be blowing me off as “mental”.
Finally, last year I was diagnosed with Lion Pain Hematuria Syndrome and although I was relieved to have a name for my problem I am still very frustrated. My pain is constant and sometimes nearly unbearable. My quality of life has gone way downhill. I have two children and a home to care for and have found myself increasingly unable to do so. I am on large doses of narcotics for the pain but I tend to grow a tolerence for anything they give me and it stops working. In another week I will be going to pain management. My Nephrologist has told me several options pain management might give me one of them being a nerve block. If there is someone out there who has had a nerve block I would be interested in knowing if it helped. Also anyone who has had success with any treatment for LPHS and might like to share with someone who is desperate for relief and maybe more options for treatment I would appreciate any feedback.
Thank you for any help or advice anyone may have,
My name is Tara and I am from Ohio. I am 29 years old. I have a daughter that is 8. Everything she knows is mommy being sick.
I have Lupus and Loin Pain Hematuria Syndrome. It struck me in 2000. I had several kidney stones and had to have surgery to remove them. Ever since I have had dibilitating pain. I went to many urologist and they all told me the pain was in my head. went on antidepressants and began thinking maybe it was me! I met a wonderful urologist who said I was the first patient he had diagnosed with LPHS. That’s when all my medications started being prescribed. The pain was not being taken care of. I could barely get out of bed. I was vomitting every other day. I had lost 30 pounds in 4 weeks. I slept 20 hours out of everyday. How could I take care of my daughter? My pain was not my first worry but my daughter seeing me that way and worrying what kind of chances she will have in getting these diseases. That thought just killed me. My depression sunk even lower and I was going through a divorce. I noticed I was a totally different person and hated it.
I look back now and I am so glad I made journal enteries. I often thought how much easier it would be if I just died. Now that I am on a road to becoming myself again, I can’t believe what I wanted to do to myself.
I have recently had a pain pump implanted. I am having alot of success with the procedure. However it is causing new pains. My right leg is completely numb and I am having awful pain that meds are not helping. They think that my pump is sitting on a nerve. The only way to fix that is to have the surgery done again, moved and have the possibility of it happening on the other side.
I would recommend this to anyone with chronic pain if you are a canidate for it. It really has given me a piece of my life back. I no longer feel like I am dying. I am able to take my child outside to play and out shopping. I am still living with pain but it is much tolerable. My Lupus still is something I am dealing with daily. But the rare kidney disease is so much better. I am lucky that I have wonderful doctors that have supported me. I was a guinea pig in there office for the pain pump. They knew of how bad the pain had effected me and decided this was my only hope. God bless smart doctors.
If anyone would like information, I would be glad to answer your questions the best I can. Thanks for reading my story. Hopefully I will chat with those of you who share similar situation. I find it is a stress reliever to know there are people out there that are in my same boat. My husband doesn’t understand so it has been a long, hard road alone.