Four years ago the nausea, commuting, erratic blood pressure, weight gain and blood on the toilet tissue started. My primary was wonderful but could only treat each symptom. I was already on 8 vicoden a day due to a serious neck injury so I don’t remember the flank pain. I had cystography but my doc was clueless. I did get treated for trigimonis and my symptoms suddenly stopped. I forgot all about it until about 6 months after my symptoms returned only this time much worse. The hospital I went to refused to give me pain pills or a neurology referral for a year and a half. The urology dept promised me a neurology referral if my cystography came back normal. Then when it did come back normal they refused the referral and told me to go to the emergency room. On a scale of 1-10my pain was consistently 12. When I told the nurse in urology that the pain was so bad I wanted to blow my head off they immediately sent the police, which is how I ended at the new hospital, cause once the cops heard what I’d been through they understood my pain. So I immediately got a neurology referral, pain meds and a diagnosis. Praise god, cause I almost lost my mind. I’m still totally in pain, bleeding everyday and sick to my stomach… But at least I know I’m not crazy. HELP ME START A RESEARCH PROJECT. Patti 619 992 2765
Tag Archives: research
LPHS…. my story from London
I am in London, England and this has hit me too. On June 6th last year I had an episode of frank haematuria and went to hospital, they suspected a stone but after many tests and a ureteroscopy, I was diagnosed with LPHS and sent home with painkillers…practically written off.
Not happy with this I complained to my doctor who referred me to another specialist at a well known hospital in London. He said he needed to do another ureteroscopy and i had that done last month, again i have now been almost written off. I am under the care of a pain team at the hospital who want to fit me with an implant which will mean i can zap myself when bad. The tablets they gave me are pregabalin, diclofenac and a regular analgesic. Diclofenac is related to aspirin and gives me terrible acidity and I am allergic to gaviscon and alike antacid meds. Pregabalin wipes me out and I just sleep all day.
I can no longer work and the tablets only dull the pain slightly.
Our national health service means that as soon as they realise they cannot fix me, i am sent home with pills and forgotten about.Please wish that the USA does not end up with the health service it is currently pushing for as then you will all be in the same boat as me and my mother who was not allowed MS treatment because it was too expensive for the over 5o’s.
I am 39 and a full time carer for my father which is becoming an untenable situation. I also have a twelve year old daughter and pray she does not get this too. Some stories on here show a hereditary link.
I feel that because there are so few of us around the World, the money needed for research will never be forthcoming and that means we are all left in limbo and in terrible pain.
It is a solitary illness because when its really bad and you are doubled up , nothing anyone does can help so you tend to retreat into your own space to deal with it…like a wounded animal.
I wish all sufferers as much pain free time as possible…..above everything, the pain gives us wrinkles!!
Annie ([email protected])
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.
For the past 5 years, I have had the most wonderful Doctor, Dr. Abhin Singla. He has helped me go through so many things. My diagnosis list is 3 pages long, single spaced and over a period of 25 years. You see, I had breast implants in 1979 and they ruptured, they removed them in 1992, apparently they had been ruptured for approximately 3 years before the doctors found out. The silicone had already leaked into my body. The only things left were the silicone capsules. Some of you might be asking, “Why did I do this?” It wasn’t for vanity, I had double d’s of my own. I was 110# and already had 5 surgerys on my breasts due to fibercystic disease and tumors. The doctor suggested I have a complete masectomy and put these little “b”cup capsules in. My X husband insisted we do that, he said no 27 yr old woman should go with out breasts. I was such a fool, I was so afraid, he’d leave me if I didn’t do it. So, I did. By the way, he did leave me, 3 years later. But, I blame myself, for the final decision. I didn’t have the courage to say no. Now, I’m paying the price, with my poor health for that foolish decision. Since 1990, I started getting sick, I broke my foot, it took almost a year for me to be able to walk again, I kept getting infections, then my gall bladder caused enough problems to be removed…. I wont go into my medical history, we’d be here forever. After all the years of seeing SO MANY Doctors and none of them really wanted to treat me. I was a liability. I was told by medicaid to go to the emergency rooms if I got sick, so I did. They thought I wanted the drugs. I wanted a doctor who help me. I have lupus and my immune system sucks. I get sick easy. I have to stay away from people who are sick. I used to have headaches so severe on a daily basis for over 10 years. I became addicted to one specific medication. I found this absolutely wonderful man who said he would help me get off of it, Dr. Abhin Singla. He is not only my doctor, but my friend. He got me off the meds and has helped me with getting my life back to some kind of normalcy, if thats possible. I was in a wheelchair/walker and crutches for over a period of 6 years, due to arthritis. There came a point when I just couldn’t walk anymore. He wanted me to get my knees replaced. The doctor he suggested said no at first. But my Dr Singla, kept saying, she can do it, she’ll work hard. So we did both knees at the same time. Today, I’m walking on my own, without assistance. That was 3 years ago. Since then, I’ve had other health issues, but he’s always pulled me through. I went to him 22 months ago with what I thought was passing a stone. I’ve passed many over a 30 year period. He sent me to see a urologist. None of them in that group could do anything for me, I was passed around within their group for over 6 months, the pain in my right kidney, upper ureter and lower ureter was excruciating. Finally I was told, there was nothing more they could do for me. So I went to a Nephrologist, she referred me back to the urologist’s. I thought I would try a different urologist in the Chicago area, after telling “Doc” what she wanted me to do, he said “NO WAY.” We did all kinds of tests again, he never gave up on me. Then he found a new urologist for me to see. After more tests and trying different things, the doctor felt that maybe we should take the kidney out. He did some research on the symptoms and thought this could be the answer. The day before the surgery was scheduled, Dr. Singla pulled the plug, NO SURGERY. He wanted to do some more testings. So between the urologist, Dr Cho and Dr. Singla, they decided to do a biopsy. By this time the left kidney had started to have the same kind of pain. Dr. Cho was up many nights and finally found out what I had, everything pointed to LPHS and Arteriolonephrosiclerosis. Neither of these two wonderful doctors have given up on me, we are trying to find some answers. Something to help me, to take away the pain. When I see something on this site, I tell them, this is what they’ve tried. So we try it. This disease is new to them.
I can’t tell you how many times I’ve cried myself to sleep because of the pain. Times when I just want to die and quit, but I’m no quitter. I’ve come this far. We’ve tried meds, nerve blocks, injections of “cocktails”, so many things, If it wasn’t for Dr Cho’s diagnosis and Dr. Singla helping me with the pain. I’m not just referring to pain meds, but to search for other ways to treat this disease, I don’t know where I would be. I remember an emergency room doctor accusing me of being drug addict, I insisted that he call Dr. Singla personally, he was my primary care physician. He didn’t know or want to know anything about LPHS, but he made the call anyway. When he returned to my cubicle, he told me I was to be admitted to the hospital and that he owed me an appology. Doc Singla and I have been going through all of the support groups to see what others have tried, what worked or did not work for others. So PLEASE, tell us what you’ve all tried. I’ve read a lot of things in some of these letters about bad doctors, but as we all know, there are some really good ones out there too.
I don’t get too many good days. As I am having severe trouble with urinating now. My right kidney is twice the size it should be. I’ve asked both Docs about doing an exploratory, to see if adhesions are causing some of the problems. Have any of you had problems with adhesions and one more question… have any of you had any type of silicone implant (breasts, hips, knees,?)
Thank you for hearing me out, but its been a long struggle and I am so tired, like all of you. But I have to say this.. if you haven’t found a doctor that believes in you, as I have, keep looking. Without Dr. Singla, I don’t know what shape I would be in, he’s a doctor who really cares.
NY – Beth Israel Medical Center
Russell Portenoy, MD
Pain Medicine Specialist
Chairman, Department of Pain Medicine and Palliative Care, Beth Israel
Depression and Chronic Pain Is Extremely Common
In some patients, depression follows the pain, and if you can effectively treat the pain, the depression would get better. And in some patients the depression seems to drive the pain, says Dr. Portenoy. He explains that when these two conditions coexist, patients need carefully coordinated treatment.
Dr. Portenoy is among New York Magazine’s “Best Doctors” for 2008, as listed in the June 16, 2008 edition of the magazine. The New York Magazine list is excerpted from Castle Connolly’s annual guidebook, “Top Doctors: New York Metro Area.”
First Avenue at 16th Street
New York NY 10003
Questions About Using Opioids for Chronic Pain
Q: Would you say that opioids are a last resort?
A: No. Opioids should be considered for every patient with chronic, moderate to severe pain, but in every case, you would only prescribe the opioid after carefully considering the responses to several questions.
Q: What are those questions?
A: First, what is typical treatment with respect to this pain? Second, is there some other therapy that has as good or better efficacy and safety? Third, is this person at relatively high risk of opioid side effects for whatever reason? And fourth, is this patient likely to be a responsible drug taker, or is there a history of substance use problems?
So in some cases, for example a patient with severe pain who has not done well with several steroid or other drug injections and physical therapy, and who presents to the doctor with back pain so severe that he can’t walk—that patient might be considered a candidate right then for a trial.
Q: What is an example of that review process with a typical patient who has arthritis of the knees and hips.
A: Everybody would agree that the first-line therapies typically would include acetaminophen, physical therapy, or a TENS unit, or maybe—if there’s a single joint that has some swelling—an injection.
The next-line therapy would be an NSAID. But if that person has a history of an ulcer or a history of bad heart disease, the NSAID risk gets to be relatively high. So that patient might be considered for a trial of an opioid at that point.
Q: If I’m that patient and I’m put on a trial, how will I use the drugs?
A: Almost everyone with chronic pain appears to benefit more from regular, fixed, scheduled use as opposed to PRN [when needed] use. There is a general perception, two decades old, that patients do better if they have pain medicine in their blood 24/7. It’s done in a sustained way, so that the blood levels don’t fluctuate much.
Q: In the whole range of treatments for chronic pain, where do opioids fit in?
A: The chronic use of opioid therapy to treat noncancer pain syndromes, such as headache and low-back pain, and arthritis, continues to be controversial. Most pain specialists nowadays would say that opioids might be considered in any patient who has chronic, moderate to severe pain, but generally should only be implemented if there are no other treatment options that have a favorable and safe effect. The shortest way of saying this is that most pain specialists would not consider opioids first-line treatment for chronic noncancer pain except in highly selected patients.
But we have accumulated clinical experience that suggests the following: There is a sub-population of patients with chronic pain, who can be given access to long-term opioid therapy, and they will experience sustained and meaningful control of pain in the absence of intolerable side effects and without the development of tolerance or the need for dose escalation. And they will not develop any aberrant drug-related behaviors consistent with abuse, diversion, or addiction.
Q: What about the use of opioids for breakthrough pain?
A: It looks like about 60% of patients with chronic pain have flairs that can be called breakthrough pain, and in the cancer population, the use of a short-acting opioid co-administered with a long-acting drug is the standard of care.
With noncancer pain, it’s a moving target. People are trying to figure out if it should be the standard of care or not. I think it should not. I think it should be a case-by-case decision.
Q: What are some of the risk factors when opioids are being considered? Do they all relate to addiction?
A: No. Suppose you have a patient with very bad lung disease who might be at risk for the respiratory effects. (Opioids can suppress breathing.) Or you have a patient who has severe gastrointestinal problems—where the constipation induced by the opioid might become very problematic. Or you have an elderly person with arthritis who has a mild dementia: In that case, the bias would be to try an NSAID because the opioid has a higher likelihood of causing cognitive impairment.
Q: Is the ultimate concern, though, addiction?
A: No, it’s broader than that. It’s responsible drug use, a term I use purposely because for clinicians, addiction is an uncommon problem—a very, very serious problem, but it’s an uncommon problem.
Q: So there are irresponsible uses that do not involve addiction?
A: What’s much more common for clinicians than addiction is what has been called aberrant drug-related behavior. Behaviors like doctor shopping or frequent visits to the ED [emergency department], or increasing the dose during pain flare-ups without permission. Or taking an opioid to help you get to sleep at night, or taking it when you’re feeling anxious. Or in some cases using an illicit drug, like smoking marijuana on the weekend, without telling you.
A clinician who is trying to prescribe these drugs safely ought to be monitoring all of those behaviors and trying to work with the patient so that the behavior regarding these drugs is responsible—meaning take the drugs as prescribed.
Q: It’s not as simple as saying that opioids deliver a “high,” is it? What “benefits” do abusers get from the drugs?
A: There are studies that have been done that show that in the usual person—with no history, and no family history of addiction—the typical mood response produced by opioids is dysphoria, not euphoria. But in some cases, they might be driven by co-morbid psychiatric disease—they may have anxiety disorder and realize that these drugs produce some reduction in anxiety. Or they have a depressive disorder—these drugs were used in the 1950s as antidepressants before we had any real antidepressants.
Or the patient may have a co-morbid psychiatric disorder associated with impulsive drug use—they would take any centrally-acting drug, any drug that alters their consciousness, impulsively.
There are also people who have an addiction biology, and it’s profound. I talked to a physician who became addicted to opioids, and he told me that the first time he took an opioid, it was like he had discovered something very magical about life. He said, “I knew this was my substance, this was something that I needed.” With a single dose.
Q: What is the risk of actual addiction?
A: Most scientists who work in this area think that about 10% of the population in developed countries have the biological predisposition, the genetic predisposition, to potentially become addicted. Truly addicted. Which is a huge number, 10%.
Q: If a chronic pain patient passes your various tests and is a good candidate for an opioid, what happens then?
A: At the present time the professional community is telling doctors that they have two obligations whenever they prescribe a controlled prescription drug.
Number 1: To know the pharmacology so that the patient’s outcomes—meaning the pain relief they get, and the side effects they experience—those outcomes are optimal.
Number 2: They need to do risk assessment and management to ensure that the patient takes the drugs in a responsible way, and there is minimal risk of abuse, diversion, and addiction.
Q: What does that mean for the patient’s experience?
A: Every patient should undergo a comprehensive assessment and risk stratification. The doctor takes a history and then makes a decision: Is this person at high risk or at low risk of developing problematic drug-related behaviors?
The most accepted factors that put a person into a high-risk category is a personal history of substance abuse now or in the past, a family history of substance abuse now or in the past, or a history of major psychiatric disorder. And there are many, many other factors: Current smoking, history of physical or sexual abuse.
Q: Give an example of a high-risk patient.
A: A young man who injures his back at work and has pain for six months, sees a doctor, and the history reveals that the patient binge drinks on the weekend, uses marijuana three nights a week, and has a brother who has been through detox. If an opioid is being considered for that patient, then the structure of the therapy should be very defined and very rigid, it might include any or all of the following.
An opioid agreement that is used to educate the patient about responsibilities and consequences of bad behavior
A small number of pills prescribed
The requirement that the patient returns with the pill bottle so that a pill count can be done
The requirement that the patient gets urine drug screens periodically
A requirement that the patient gets a consultation with an addiction-medicine specialist
The requirement that the patient uses only one pharmacy, so that you can track what has been dispensed
Q: What about a low-risk example?
A: A patient 70 years old develops bad knee and hip pain from arthritis, and the history reveals no personal history of substance abuse, including no use of alcohol, no family history, and no known psychiatric disease—that patient has very, very low risk of developing problematic behaviors. For that patient, a structure might be to come back in a month and provide a phone call in the middle.
Q: Sounds complicated. Should chronic pain patients seek out a specialist?
A: Only about 5% of people with chronic pain ever see a specialist. This is a type of therapy that, for 20 years, people like myself had been promoting as needing to be done by primary care doctors.
Q: What advice do you give patients who are looking for possible opioid treatment?
A: I would like patients to think, “Opioids may or may not be appropriate. But I need to see a physician who’s comfortable with prescribing opioids and also knows how to do it in a way that’s safe and effective for me. When I go into that physician, I know that I’m going to have to be honest and let that person do a good assessment. And I’m going to have to provide my records to that person. If that means that I have to have urine drug screens, so be it. If I have to sign an opioid agreement, if it’s reasonable and educational, I’ll sign it. If I have to go and get treated by a psychologist at the same time and I can afford it, I’ll do it.”
There has to be a recognition that this is a controversial therapy that takes a lot of effort on the part of the clinician, and the patient has to not only adhere to the therapy, but also has to communicate and be willing to be monitored.
Q: Given all that, do you believe that opioids are underused in the treatment of chronic pain?
A: Absolutely. I’ve seen this controversy in the U.S. going back and forth for about 25 years. This is a pendulum that swings back and forth depending on how frightened people are of addiction and abuse, and depending on how much the advocacy community gets the word out about undertreatment.
There’s a whole political and social context here that is not based on any known science. And in the 2000s we seem to have the pendulum shifting toward more denial that the therapy can be useful, more reluctance to prescribe, more concern about regulation.
Q: That’s an unfortunate swing for those people who would benefit from these drugs.
A: No question. But I want to acknowledge what my colleagues would say, many of them—that 25 years of research has yet to show the evidence that long-term opioid use is effective for chronic pain.
There have been a large number of good clinical trials, but they’ve all been either short-term or in very selected populations, or didn’t measure all the issues.
But the bottom line is that we have about 9,000 years of clinical experience showing that they can work. And you also have a consensus in the professional community of pain specialists—not just in the U.S., but also in Canada and England and other countries in Europe. You have a consensus that has evolved based on the data that do exist and the observations that exist.
The real issue is, let’s stop arguing about should patients ever get opioids and start arguing about who should get them and how you prescribe in a way to optimize the outcomes.
Q: Of course, even when drugs work, patients don’t always take them.
A: In the past 20 years, there’s been all of these new modified-release formulations, so now there are once-a-day drugs, twice-a-day drugs, patches that last three days, all for the treatment of chronic pain.
So you would think that compliance would be easier because it’s more convenient, and in some respects that’s true. But we just did a little study here, which we haven’t fully analyzed yet or published, and what we discovered in our group was this: In almost 100 patients, about 50% were non-adherent, and the vast majority of that group was undertreating.
It raises questions: Why are they undertreating? Are they afraid? Or do they have side effects? Is it money?
The bottom line is, most patients are not out there acting like [drug addicts], most patients are pushing you to give less, or not taking everything you prescribe. They’re not interested in abuse, they’re interested in getting off this stuff!
Development of new pain-killing drugs that are not addictive
US and Australian research team which has made a breakthrough in revealing how opioid drugs such as morphine both relieve pain and also cause addiction.
The scientists tested a new drug called AV411 that blocks morphine’s effects on glia cells but not on neurons, resulting in effective pain relief without the side effects of addiction.
Currently, AV411 is in clinical trials at the Royal Adelaide Hospital. And it is being developed by Avigen Inc., a Californian biopharmaceutical company.
University of Adelaide (2007, November 23). Strong Pain-killing Drugs Without The Addiction. ScienceDaily. Retrieved November 24, 2007, from https://www.sciencedaily.com/releases/2007/11/071123210617.htm
Ireland, Galway – Centre for Pain Research
NUI Galway has formally launched the recently approved Centre for Pain Research (CPR). CPR aims to provide a centre of excellence for interdisciplinary research between the University and colleagues in the health service with the aim of advancing the scientific understanding of pain from the basic sciences to the population level.
Range of disciplines:
Psychological and neuropsychological aspects of pain
Pain treatment and pain management
Population and policy aspects of pain
Integration of pre-clinical pain research and clinical practice
Dept. of Pharmacology and Therapeutics
Dr. David Finn
Dept. of Psychology
Dr Brian McGuire
Department of Psychology
National University of Ireland, Galway, University Road, Galway, Ireland.
Phone: +353 (0)91 493101
Fax: +353 (0)91 521355
You are not Sick, you are Thirsty—Don’t treat thirst with Medications
College Station, Texas: After 12 years of clinical practice both in New York and Texas, Dr. Daniel Bettiol is hanging up his white coat forever to promote the healing benefits of proper body hydration.
Dr. Daniel Bettiol is leaving the profession of Chiropractic to pursue his clinically-tested belief that the primary causative factor in Headaches, Neck & Low Back pain is Dehydration of the tissues and the inability to eliminate accumulated Metabolic wastes from the body.
While treating over 3,500 patients and delivering over 120,000 chiropractic adjustments, Dr. Bettiol observed that over 90% of his patients were inadequately hydrated. “My most consistent finding was that 100% of my chronic Headache and Low Back patients were severely dehydrated. Many of these patients acknowledged an absolute disdain for drinking water,” says Dr. Bettiol. “For those patients who adopted my daily water regimen, an immediate decrease in pain symptomology was observed. That result was too consistent to be a coincidence.”
Dr. Bettiol is determined to continue the work of Fereydoon Batmanghelidj, M.D., who wrote the blockbuster 1992 best-seller, Your Body’s many cries for Water. Dr. Batmanghelidj died in 2005, but his signature slogan “You are not Sick, you are Thirsty—Don’t treat thirst with Medications” lives on. “Dr. Batmanghelidj warned the public back in the 1980s that America’s thirst for Soda, Coffee, and Sugar-filled drinks would create a huge population of unhealthy and obese people,” says Dr. Bettiol. “To say his prediction was accurate would be a gross understatement.”
Bettiol begins his new journey with the firm opinion that ALL water is not optimum for health. His extensive research has shown that Tap, Bottled, Charcoal-filtered, Distilled and Reverse Osmosis Water is NOT the ideal Water for long-term health and healing. “America has ignored the miraculous healing being experienced by the Koreans and Japanese with Ionized Alkaline Water,” says Bettiol. “Where Bill Gates vision was a computer in every home, my lifetime mission is to get an Alkaline Water Ionizer in every home throughout the world. That would not only eliminate obesity, chronic pain and the need for useless Medication, Surgery & Radiation…it would singlehandedly cut our annual $1.5 Trillion health care costs by 90%.”
“I would rather people spend more time with their families, their hobbies and the work they love, than sit in a doctor’s office for four hours waiting for a Doctor visit they really DON’T NEED.
Dr. Dan Bettiol