Welcome to Life in Pain

LPHS....What now?

After reading many of the stories on this site, I have come to realize the one thing everyone has in common is the fact that they are alone in how they feel. I have been recently diagnosed with LPHS, my 16 year old daughter is in testing for conformation of this condition also. I relate to her feelings, and though it may seem a blessing to have someone around who understand, it is really a curse to see my daughter falling to the same fate as I. She is just getting started in life, and has so much ahead of her. Treatment options are also different for a child.

My Story

My name is Ivy Goss. I am a 37 year old mother of 4.Recently I was diagnosed with a disease that is very uncommon; Loin pain-hematuria syndrome. Not much is known about this condition. There are no known cures. Once known as idiopathic hematuria, LPHS simply means you have blood in your urine, and pain in the kidneys and, or lower back, with no known explanation.

My mother and sister have the same symptoms, yet no diagnosis for the condition. They live in Pennsylvania. I live in Washington State.

Painful life

I was diagnosed with LPHS at the age of 16, I am now 18. Luckily I didn't have to go through a lot of doctors, my mom also has LPHS. She knew exactly what needed to be done. LPHS has changed my life so much. I can't do the things normal teenagers do. Because of my age my doctor won't give me any pain meds that work, just tylonol 3.

Besides my mom, I don't know anyone who has this. When I found this site today it made me feel less alone. Less of a freak.

Chronic pain for almost 2yrs and still struggling through life......

Well here is my personal story. Im 36 and a single mother. I was in a car accident back in august 2008. Ever since then it has been down hill. Well after the accident i seen my family doctor n she said i just had soft body tissue bruising or something like that. She prescribed me some vicodin.

Overwhelmed at 17.

I just found this website just recently and I think talking to people that have pain just like I do and understand the way I'm feeling will empower me. I was just diagnosed with LPHS in October after about a 1 and a 1/2 of not knowing what was happening. Kidney stones were what started the process off and I had several procedures for that and some spinal injections to try to alleviate the pain but it didn't work. I have some good and bad days but mostly bad days.

Answers to my questions...do you have any?

About six weeks ago, I found this wonderful site, it was and is still so very helpful to me. I've read so many of your story's, if not all, of what you have said about LPHS. I was diagnosed almost 2 months ago. I'm 58, but now have realized that I have had this disease for many many years. I can't count how many doctors have told me "there's nothing I can do for you." Or MY ABSOLUTE FAVORITE "Maybe you should seek some phychiatric help." Knowing now that I actually have something wrong with me is a relief, but for it to be a rare kidney disease, only confuses me more.

Overwhelmed and in need of advice

Hi, my name is Kat. I'm 34 and was diagnosed with LPHS a couple months ago after a biopsy revealed thin basement membranes -- and seemingly every other test known to medical science showed nothing more telling than "hey, there's lots of blood and stuff in your urine."

23 years old and uncurable

hi i've been on this website for around 3 years and i have made some great friends who understand what i'm going throught. i have had LPHS for 6 years now and am still uncurable. if anyone wants to ask any questions feel free to email me. its totaly_tweety@hotmail.com. . i also want to tell people about a fanatastic doctor who is helping my surgeons even tho he lives in ohio and i'm in scotland. his name is dr herbert and he is at ohio uni in research.

Fibromyalgia/CMP

I was just wondering if any of you are suffering from FM or CMPS?
I have been getting anywhere from 36-42 trigger point injections a week for about 2 1/2 months now, and am preparing to have the botox injections in my lower back, up my spine, across my shoulders and the back of my neck. Has anyone here had these botox injections? I am scared to death about the pain being worse than the injections I get now :-(
Thanks for any responses you may give me whether it be positive or negative.

LaTrecia

My name is Tania, I am 16 yrs old and my doctors believe I have LHPS

My name is Tania, I am 16 yrs old and my doctors believe I have LHPS (although they are still checking for other possible diseases). I live in a private athletic boarding school miles away from my family and am finding it extremely difficult to get through this health issue by myself. Although I know my parents don’t know what I'm going through neither does anyone at my school, my friends, my roommate, or any of the staff members. I feel very lonely and alone at school. The pain is so unbearable and I am always scared for it to return.