I need HELP

I was diagnosed with LPHS in 2009, Dr. Singri and Dr. Hebert in Columbus, Ohio. This was the beginning of a my now ongoing horrific experience, I am now 60 dealing with unrelenting exquisite pain. In 2007 through 2008, after numerous kidney stones, pain that was unrelenting, blood in urine, I had stones shattered by la-pro-scopic lazor, a stent was placed in my kidney to ease the passing, all that did was put me back in the hospital where the stent had to be removed. I was told by a kidney specialist in Arizona, my pain didn’t make any sense.

In 2009 a miracle, I made an appointment with Dr. Singri, my Mother and Sister accompanied me, I described in intricate detail of my pain and symptoms; he said, I believe you have LPHS, a biopsy confirmed the diagnoses, pain management is the only option. I had already lost my job, my independence, my home, everything. Even my family and friends doubted everything I described. My Mother would lay on top of me to quiet my screams as she tried to squash the pain. I can not get relief in any position, sitting, standing even laying down makes it worse. I am usually sitting Indian style just rocking back and forth.

Over the last few years I have also been diagnosed with severe depression, fibra-myialga, psoriatic and rheumatoid arthritis . I was an inconvenience to my family, I now live in a rooming house in Delaware, Ohio. The first pain specialist prescribed Oxycontin, preformed a d enervation, by inserting a four inch needle into my spine, more pain the effort was unsuccessful. After losing 50 pounds, and when I witnessed the doctor stealing my medication I sought help at OSU hospital. They started IR and ER morphine, fentanyl patches, seroquil, clonazapam and anti depressants, lyrica and steroids. On the pain scale I was then a 7 which seemed like a gift from God. Until last summer, when I was admitted to Grant Hospital with kidney failure. I was told I was over-medicated, they prescribed Cymbalta and IR morphine every 4 hours. The pain nightmare was back a full force 10. I was released a week later, still with a critical kidney infection the pain was unbearable, I tried unsuccessfully to end my life, to be free of this burden of pain and the inconvenience of my existence. By this time I was wheelchair bound. Unable to care for myself with no desire to live or thrive. I wanted to be free.

I am now seeing a new pain specialist, who has admitted his lack of expertise with LPHS. He began by prescribing Zonagran (side effect, kidney stones) I had to stop after passing 5 stones in one week, now on Baclofen, Gabapentin and Opana 20 mgs ER every 12 hours, the morphine is no longer effective. At the onset the main issues affected my right kidney, now as Dr. Singri suggested the left kidney has joined in, again the prescribed medications lack effectiveness, level 8 and rising everyday. I don’t know what to do…..should I see Dr. Singri or Dr. Hebert again or seek help at a pain clinic? There is so much more to my story, if your interested I can go into further detail of my struggles and losses.

What do I do now?

2 thoughts on “I need HELP”

  1. Try intrathecal pump for maintenance oral meds for breakthrough and ketamine infusion therapy. Dr Robert Wills at Austin Pain Associates Austin, TX.

  2. I have suffered under this hideous horrific, torture- chamber of pain for more than 25 years, and I am also a recovered alcoholic for more than 40 years. When I got the diagnosis I felt like I was now at the end of my rope. The reason for this is that I am allergic to all pharmaceutical medications for pain, except Demerol. I asked the Lord to help me to tolerate a high level of pain so that I would not abuse the drug. I can handle a high pain up to 8.5 out of 10. Though, having stated the former I had to ask him to help to read the pain and how moved and what direction and mode it takes. When I felt the pain surge, I have learned not to immediately pop a pill, as often the pain would suddenly settle. There have been many hospital emergency situations, where I had exploratory – surgery . The doctors were looking for stones that were not there at the time.

    The last time I was in the hospital was about 2002. I got up early and was feeling a little more tired than usual (which now is the signal I get from the kidneys). My husband suggested that I take a little something to eat and made me a cup of tea. I finished and then, suddenly, a wave of nausea hit me more like in force of a tidal wave. Dave told me to take a pain med and I threw it up. Then tried again, taking a Gravol pill with the pain medication. I also threw that medication up. My sister brought over some liquid Gravol and that did not stay down.

    The knife-like stabbing pain came in all directions thinkable. Following that, Razor blades began cutting through the kidneys along with what felt like fingers of a hand with claws moving through the kidneys; then driving the claws into the interior flesh of the kidneys it raked through them drawing back in a spasm with a shudder. All the while I was retching up
    bile by bucket- load though, I no longer had a Gall Bladder.

    I could not sit down, lie down on either side nor could I rest on my tummy or back. I wrapped soft pillows around me, trying to comfort the loin areas with no avail.

    I did not want to go to the hospital as many time treat us like addicts. My husband has to sometimes demand I medicate when sees the pain I normally go through.

    I also tried that day to lie down on the floor with no relief and then tried to climb up the wall. This was maniacal! It started about 9 A.M and at about 4 P. M. I asked my husband to contact emergency room at the hospital and explain about my allergies and what I was going through.

    I continued to throw up all the way down to the hospital, which was an hour’s drive from our home. When we got there, my husband had to carry me and my blood pressure being usually low, spiked to 195 over 135. I was shaking all over and spasms were now in the bowel. When they put in the latex free room, I bounced up and down from the shaking with no let up in the pain nor the nature of it.

    They put suppositories for pain in my rectum. Then took blood work to check among other things, for protein in the urine etc. Then they put liquid Demerol with liquid Gravol in glucose water through eight IV bags. While still shaking; from the pain, they took me for a test to see if there was a stone in a portal and found none. I was in this pain all night into the afternoon shift the next day.

    The Doctor told me not to be afraid of taking extra medication for the pain. He said that he knew about LPHS and did not think that it was fair for me to have to go through what I did on a regular basis. From that day until this I have followed that advice.

    There are other things I have done to deal with the pain and sure that you have also gone through the gauntlet of options.

    I shared with you some of my story to let know how I try to cope and I hope it helps you some.

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