Tag Archives: zoloft

LPHS

Overwhelmed at 17.

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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. I still go to school and next year I’m hoping to go off to college but I don’t know what to do because I can barely function at home. I miss almost 2 days in a 5 day week at school and I already am allowed to go in late for school. I had to quit my job that I loved so much when this all started. And I have lost about all of my friends now because I can’t go out and I’m in so much pain. Also my parents don’t understand what I’m feeling and they can’t deal with this any longer it seems like. My boyfriend of almost 2 years is trying his hardest to understand and he is amazing but I know he can’t take all of this all by himself. It’s hard to talk to someone who truly doesn’t understand the pain I’m going through.

Some of the doctors I saw told me I’m crazy. And I know that I’m not! Does anyone have some answers for me? If you don’t want to talk in front of everyone else then email me at [email protected] please.
Thank youuu!!

Personal Story

Overwhelmed and in need of advice

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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.”

I’ve had severe flank pain radiating from my right kidney to my groin for over a year and have been peeing blood and/or sludge about 75% of the time for eight months. It’s been a scary, frustrating road to diagnosis, and treatment is still elusive; I cannot take an ACE inhibitor because my blood pressure is on the low side of normal. So if I do not have to be anywhere that day, I take marinol or make use of my California Cannabis Card. This is not optimal. I’m behind on everything. Sometimes I feel like I’m losing my mind with the stress and the pain. My husband is absolutely wonderful, patient and kind, and I’m very happy and grateful for his support. But I know that this is very difficult for him, as well. I don’t know how to fix these things.

A month ago, I had laser lithotripsy to remove a 1 cm stone lodged in my left ureter. The stent was removed a couple days ago and the whole experience was misery-making and I better not have to do that ever again. I’m still in a bit of pain, but I’m no longer having to use products on which I can depend. Not fun. My husband just told me today that I cried out in pain a lot while sleeping when the stent was in. I felt so sad and worried that he has to listen to that and not be able to do anything to make the pain stop.

My family doesn’t quite get how I’m feeling. Most of my friends don’t, either, and understanding doctors have been few and far between. I’ve been very depressed and anxious (more so lately, but they are long term issues for me). I’m a kidney stone quarry and have been since I was twenty. I have Trigeminal Neuralgia, migraines, and get blood clots. I’m a mess. And often treated like I’m crazy.

On the 23rd, my Dad called to let me know that my grandfather passed away. A few weeks ago he fell on his porch and lay there in the Kansas cold for thirteen hours. He was 77 and already had respiratory issues, but the doctors said he was doing better. Then he suddenly wasn’t. Such a horrible way to go.

The funeral is in Kansas on the 6th of January. I’ve already booked flights and a rental car. But I’m not sure if I can really handle the travel. Does anyone have advice? How difficult will it be to stand in lines and deal with the new restroom restrictions? Am I kidding or underestimating myself? I’m leaning toward staying home and I know my family will be livid if I do. How do you guys handle family and travel?

It’s been rough around here lately, and I’d be grateful for advice!

Thanks,
Kat

LPHS

LPHS and Acupuncture

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Hello everyone,

I was wondering if any of you have tried acupuncture for the treatment of pain and bleeding in regards to LPHS. If you have, I would like to hear from you on whether you had success or not. I have had 5 treatments where is she trying to focus on the kidney itself. It is still hard to tell if it is working or not. Any help would be greatly appreciated.

Hoping to hear from someone who could be helpful.

Helene

Personal Story

Newly diagnosis

2 Comments

Hi, my name is Helene and I am 48 years old.

I have been in constant pain since September 25, 2003 and have gone through numerous tests to find out why I have so much pain on my right flank and have gross hematuria.

It took my going to another city to see a nephrologist who cared enough to take the time to ask questions and not look at me as if I was a nut case and it was all in my head.

The nephrologist in my home town basically told me that I would not bleed to death and that I should consider pain management counselling. My last visit with him was dibilitating in itself as he accused me of letting other doctors know that he had suggested some possibilities of what I might have but he had never followed up on any of them. He was more concerned about his reputation than my health.

I am relieved to have a name to my pain and suffering, which in itself will help me in dealing with the pain. It is hard to live everyday not knowing if you are causing yourself further harm by what you ingest or the work you do. I was able to put those thoughts to rest. I have been advised by the nephrologist that I should continue to live my life to the fullest and eat/drink what ever I want.

The other suggestion he had was to go on a pain medication to be able to get through every day without too much discomfort. IF things do not change in the next 2 years, then I should consider getting an assessment by a physician who performs “Auto-Kidney transplant” as this may be the only answer to relieving my pain.

I am interested in any help with others who have the same disorder and may be able to help me deal with it.

LPHS

I was diagnosed with LPHS only about a month ago.

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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!!

Kisato

Depression, LPHS, Personal Story

LPHS

3 Comments

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,
Joy

Medications, Personal Story

is it possible i have headaches as a result of taking chronic pain medications?

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does any one get rebound headaches (migraines) as a result of taking chronic pain medications,

for my pain i am taking:
avinza 150mg per day
MSIR 15mg as needed (max 120mg a day)
zoloft 100mg a day
synthroid 50mcg a day

gabitril is one new medication i started (with a starting dose, i think it was 50mg) about 4 weeks ago, but stopped 4 day into it because of constant, but not very strong headaches, incidentally this last attack of migraines continued after stopping the gabitril.

i have been having headaches since then, with some days better and some days real bad, went to emergency room twice, done wide range of scans and checkups with out finding anything wrong with me or my head. I have an appointment scheduled with a neurologist only at the end of this month.