New member with LPHS

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New Member

Date Joined Jan 2012
Total Posts : 2
   Posted 1/12/2012 10:09 PM (GMT -6)   
Hello everyone,
   I am new to this site and hoping to connect with other people that have LPHS.  I was diagnosed back in 2004 and until the last 8 months have been managing okay with it.  I would have flare-ups every 3 or 4 months, but in the last 8 months, I've been hospitalized about 5 or 6 times to manage the pain and nausea.  My medicine has been keeping my pain under control until last April or so.  Now, no matter what they try to put me on maybe if I'm lucky will take the pain from a 9 or 10, down to a 8, and that's if I can even keep the medicines down.
   I've read some of the other posts about what different things people have tried, procedures, medicines, etc.., and I'm guessing I just want to see if anyone has any suggestions for me.  I have an appointment with my nephrologist tomorrow afternoon, but if it's anything like the last time I saw him 12 months ago, he'll just tell me that there's nothing else that he can do for me, and we just have to manage the pain and hope for the best.  I'm a mom of two and a military wife, so sometimes "hoping for the best" just doesn't cut it!
   I'd appreciate hearing from anyone else out there who has LPHS and/or anyone who has dealt with or is dealing with chronic pain.

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 1/12/2012 10:37 PM (GMT -6)   
Hello Ollie!

Welcome to the CP forum!

The LPHS threw me for a loop…so I looked it up, and found this "Loin Pain Hematuria Syndrome"….I'm guessing this is right?

We all deal with Chronic Pain here, so yes we do understand! I'm terribly sorry you have been suffering so much….and at a 8 to a 10….it sound like your pain is extreme. shakehead

Would you be willing to share what some of the med's they have tried on you? Percocet's?….and so on?

Take care, and Enjoy the forum!

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."

Forum Moderator

Date Joined Feb 2003
Total Posts : 16423
   Posted 1/13/2012 6:33 AM (GMT -6)   
Hi Ollie and welcome aboard. In the past we have had several people that were members here at the forum that had LPHS. If I remember correctly many of them had a difficult time getting a correct diagnosis in the beginning, along with finding a dr that knew what it was and how to treat it.

We now have a kidney forum here at Healing Well and you may want to pop in over there and see if they have any active members with LPHS. Of course you are always welcome to hang out here at the chronic pain forum too.

You may want to consider using our search feature which is located at the top on the right and type in LPHS and see what kind of posts there is and how current the posts are.

Anyway, I just wanted to stop by and say hello and welcome aboard. Keep us posted on how you are doing. r
Moderator Chronic Pain Forum
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