Opinion: Opioid Caused Deaths – What We Can Learn

Opinion: Opioid Caused Deaths – What We Can Learn

By Paul Gileno – President/US Pain Foundation

Hearing of more deaths today from medication overdose saddens me. When will these tragedies stop? Lives are ended too soon because of the improper use of medications. As the founder and president of U.S. Pain Foundation, I want to stress the importance of pain medicine education. With more information on proper storage and use, we can diminish the staggering statistic that 46 Americans die every day due to prescription overdose.

While these medications help millions living with debilitating pain have quality of life, they are extremely strong, and can be dangerous if not used appropriately or for the right reasons. It is imperative that a person with pain and a health care provider have open communication about the use and misuse of such medicines. When taken correctly, pain medicine can be an extremely effective treatment option, in conjunction with other modalities, to manage pain.

It would be a travesty for the recent events involving overdoses to impact legitimate pain patients who responsibly store and take medications. That is why, at a time like this, there are difficult yet important lessons to be learned as well as conversations to be had. There must be a further discussion on how to store these prescriptions. For many, these medications allow them to live their life. We cannot take that from them because someone misuses. A person seeking relief from chronic, unrelenting pain is not the same as a person who abuses medication.

The disease of addiction and pain are two separate entities; both of which are wildly stigmatized, misunderstood and undertreated. This must change. We must work together to fix this. We cannot let the sudden, terrible deaths of celebrities deter us from treating people who need help; people who are suffering needlessly because they do not have access to appropriate pain care.

To all those who have lost a loved one from an unintentional prescription overdose, my heartfelt condolences and thoughts are with you. No one should have to feel that pain and heartbreak. To those who fear their pain medication will be restricted due to deaths from misusing and abusing medicine, know that U.S. Pain will continue to advocate and educate for proper pain care. As terrible as addiction is, we have to remember that people with pain matter. And 100 million Americans are courageously battling to end the stigma associated with these medications and fight for proper health care and treatment options every day.

For more information, please visit U.S. Pain Foundation’s initiative, Pain Medicine 411 – www.painmedicine411.org. You must be informed and educated.

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Authored by: Paul Gileno

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Cyn Mittel

If the government wants to know how to truly manage pain medication, ask ANY person with chronic pain. We are the experts. We know that even taking one extra dose of our pain Meds on a bad day will leave us uncovered on another day, and we DO NOT DO THAT! We ARE the experts.

Paul

Sorry forgot to include that all of us, just because we use pain medication are considered drug addicts just because we use a pain medication for more than two weeks. This is why I dropped Kaiser coverage. There are many other doctors that feel this way, and it is best to drop such doctors before they write anything bad about you on your medical record.

Thing is I know I’m going to die in the not too far distant future from pneumonia, as so far I have not found a doctor that is willing to help me combat a chonic chest infection unrelated to my chronic pain in my back and legs due to back injuries. Most treat all things as accute when they are actually chronic and often do not know the difference between athsma and a chest infection nor are they willing to test.

Look out for yourselves and your families as no others probably will even your own doctor.

Paul

One problem in a lawsuit, it can’t be against a government employee as they are protected by the color of the law. Also we have to ask permission to sue as government agency from the government.

These are some of the many reasons that people give up or flip out. When it is perfectly acceptable to cause harm to others through their actions and there is no recourse available legally. It is far easier people to kill themselves than get the help that they need from our government. They make rules that benifit those who make the big money contributions, and everyone else suffers. This is in the tax codes, enforcement, regulations, and everthing else. We live in a country with so much profit at the expence of everything else. That the crimes that officials in many countries are convicted of are nothing compaired to the day to day stuff that they get away with here. Reminds me of the stories of nazi germany ussr red china…
Perhaps if more would talk with lawyers off the clock as friends more would understand just how bad things are here now compaied to what the world was like 50 years ago. 120 years ago one person could know the laws now days it takes more than a room full of lawyers.

I keep seeing lawsuit in this thread. I have an idea. Instead of trying to sue an entire government entity, we should target specific individual bureaucrats. Ones that are either in senior positions or even lower level guideline setters could be the way to maybe somehow get results. I am not a lawyer but maybe somebody can explore the possibility of suing individuals instead of the long arm of the FDA/CDC etc… Just a thought!

You are entirely welcome, Jean. And your insight is on the mark concerning the approach I try to take in supporting chronic pain patients. I have long tried to practice three principles:

1. It’s not about me.
2. You can get almost anything done if you don’t care who gets the credit.
3. Work is love made visible.

Meantime, I will welcome thoughts from others in this thread concerning the phrasing of possible near term and long term objectives for joint efforts.

Regards all, Red

Jean Price

David..l agree with you that we are our own best advocates for personal issues of our health care, and we also have to be self-affirming when we live with pain. Yet to impact the powerful trend happening now, I believe we need more than our stories and letters and self-advocacy efforts. And I’ve advocated for new things numerous times with several groups. People with pain are limited in their stamina and ability to follow through when needed, among other things that deal with creating a movement with purpose and beneficial outcomes. I’m a little confused by your question of what do I need, since I really just need to decide where to use my limited energy that it might do the most good…and boundary enough of it for my own life and family. And pray there IS enough to do something about what’s happening in our health care systems regarding the treatment of pain. My point was Using it to comment here doesn’t feel like it will help. It feels more like preaching to the choir! Thanks for your offer.

Dr. Lawhern…I think we all welcome your help many expertise. I know I do, and I’ve seen many positive comments about your efforts and about your own comments here. I will be excited to hear what you come up with, and I’m hopeful it may produce some good. Thanks once again for your amazing dedication. Like Dave, your advocacy for us means a great deal. Your compassion and your willingness to spend your time is a gift, not only to your wife, but also to those of us who deal with life limiting pain of any type. We are in your debt, although I would imagine you consider what you accomplish as payment enough!!

Jean, what help do you need now? Remember for the most part you have to be your own advocate first. If you can be specific…

Jean, I believe I understand and share many of your concerns. Especially in the chronic pain community, there is rather often only so much energy and time to go around after the struggles of daily life. One must prioritize (“The Spoon Theory” comes to mind, a very insightful framework for conducting daily life when one has chronic pain).

Like you, Jean — and fully granting the value of venting and burden sharing — I still think the community (or perhaps communities, given that there are many issues represented here) needs to be talking to people other than its own members. Not all of us take the same positions or have the same sense of what is most important. Some of the things that some of us think are important might turn out to be in the “too hard to do” list. But I think we need some process for identifying central points of agreement on shared needs and actions to address those needs. We also need to develop at least a partial consensus on who should initiate such actions, how, and where.

I’m hoping to offer thoughts on parts of this process in the coming weeks — not because my positions are superior to those of others, but simply because I have more energy than some, being a care giver rather than a patient. If somebody else wants to take this on, I’ll support them in any way possible. This isn’t about me. We need some starting points for action to MOVE toward better outcomes. Standing still isn’t helpful for anybody.

With such a process in mind, I’d offer a straw man concept for further discussion (perhaps in an additional article — Paul Gileno, this one is your call, I think).

Short term objective: convince the US CDC to withdraw and rewrite its recently released “voluntary” guidelines for prescription of opioids in chronic pain.

Supporting rationale: in their present form, and in combination with recent highly restrictive State laws, the guidelines are creating unintended but highly destructive impacts on patients and their doctors. Doctors are being driven out of pain management practice, and patients are being dropped from treatments which have worked for them for years — without effective alternate means to control their pain.

Long term objective: to seek a more patient-centered balance in medical practice standards for opioid medications, which address the real public health problems of drug addiction and overdose deaths, while centrally addressing the needs and experience of chronic pain patients and honoring the centrality of the doctor-patient relationship in medical decision making.

These are my two Red cents for today.
Regards…

Jean Price

I’m beginning to understand something important to me, REALLY IMPORTANT. This site and others which ALLOW my comments, EVEN ENCOURAGE THEM, but don’t seem to do much with them…are not helping me as much as they are draining my energy and fueling my frustration. Some articles are for educating and some are for peer support. And some are confusing! I don’t know if I can continue to read them and not want to spend time and energy and pain to comment…but I must try not to waste my energy this way. Or else I must leave them to others who are perhaps more disciplined than I or perhaps need to know they aren’t alone. I know I’m not alone. That is one of my sadnesses. I know what’s happening. I experience it first hand at my doctor’s office and pharmacy. And why would I think I could impact this, especially here?! When I look at all the attempts though the years…have they helped? Is it better? And it is destined to get worse with or without my input! Because I’m not heard. My input is not wanted from those in position to change this and help me!

Look at the volume of comments and efforts to even type while in pain here and the struggles that continue and all the energy used and all the anger and frustration stirred up….not helpful!! If you personally have an idea on how to impact this current pain issue, whether it’s writing letters to congress or the AMA or just helping a few people you know in pain…I SAY DO IT, put your time and energy there! Use your typing for that, use your support for those you know personally, talk about it on Facebook with people who don’t have pain…whatever! Just know this site isn’t about action and our comments aren’t really more than venting and venting uses energy…lots of it! Plus it can turn quickly into anger and be damaging! It can actually leave us in more pain than before we started reading or commenting….the pain of hopelessness, the pain of others suffering, and the pain of fanning the anger for ourselves and others!! Choose wisely where you spend your energy…choose what best helps you and helps you with your pain. Each person is different, and each must set their own limits to protect what little life they do have. If you want to be an activist regarding pain, sites that aren’t action based won’t get you there. Very few who are not in pain or supporting someone in paiin ever comment here or on other sites. So I doubt many read these sites who aren’t in pain…and those are the ones we need to reach, aren’t they?

Chris

Chronic Pain is like that crazy neighbor, who trashes their home and yard. The ones who play that so called music, at all hours’ day and night. You call the Police about them, even with clear evidence of their actions, you are the ones made to feel ridiculous and outrageous. This continues until, you get to the point that you ask yourself, “am I idiotic, irrational, and or a senseless person? These Police are professional I must be mistaken; I must not be dealing with chronic pain.” This is how doctors can make us feel and think.

Addiction is complicated, more so when we look at, how they have chosen to help those with dependence problems. These cravings have enslaved these people. They seem focused more on what they are taking, than on why they are taking them. Some are seeking escape from, the monsters in their minds; in their memories. The pain they are dealing with is emotional, many have been hurt so deeply, they only want to disappear. Others, just are looking for the euphoria. They crave the edge in their life to be dulled. They will acquire any mechanisms they can procure. Change thing A, they will secure thing B. Right and wrong have no relevance, they simply seek the escape, to be raptured from their present.

Our pain maybe different, but these obstacles are common. For many years now, we are told that, all people who take pain pills, are addicts. By combining those who suffer with chronic pain, with those feeding their addictions, they have made the resolution to these problems equivalent to one another. Trying to solve such, complicated issues with simplistic notions, likens the term, “comparing apples to oranges.” They are trying to help addicts, but at the detriment to people with chronic pain, to some degree. They have changed our pain meds, most to “addiction proof.” By altering our medications, their affects seem weaker, at least in my opinion. Some have insoluble parts, does this effect how are they absorbed, into our system and out?

David Michael

These actions are an assault on our civil rights. We have the right to proper medical care in America.

Janet Parker

All of us who are suffering because of what others have done, need to write and call every government official we can. Every social media and regular media there is to get our voices heard. We need to contact the presidential campaigns and get this war on us stopped! We are being discriminated against by our own government. Doctors know that chronic pain is very hard for the body and mind to deal with, but they are being terrorized into not treating their patients and letting them suffer. This is inhuman and cruel and needs to stop.

Kay

Lisa, I agree with you 100%. And it’s not that I’m happy for your pain, but it’s rare, and nice to have the perspective of a medical professional. In my experience so very few of the medical profession as a whole truly understands what it’s like to live this way. I also believe, like you that heroin sales will increase. I’ve been saying this for a long time now.

I actually just checked my email for the 1st time in a few days and saw the new comments and posts here. I haven’t even been online.

Being medicated made it possible for me to work years longer than I would’ve been able to.

Also, I developed CRPS after a foot surgery in 2012. I just had my 4th foot surgery in December 2015, and the CRPS has gone wild, and even though I’m supposed to be *slowly transitioning into a shoe* I’m unable to wear one on that foot for more than 2-3 hours of the day, if that. I can’t take Lyrica or Gabapentin due to reactions I’ve had to both so if it weren’t for the medications I DO get, I’d literally be screaming.

I’m still in a boot more than a shoe, and I’m considering giving sympathetic nerve blocks another try. But they only work for very short periods of time and the cost to me is high.

The whole issue of pain as a disease or syndrome, etc, needs to be reconsidered, and the medical profession, pharmacies, etc need to be aware it’s a REAL thing, and quite different from being a drug addict. We are literally talking apples and oranges here.

Lisa

I am a RN. We were taught that Pain is the 5th vital sign. I understand fully the problems that are occurring the the U.S. as a result of opioid use and misuse. However, I do not thing that trying to limit medication to only those with cancer or palliative care is going to “make things better”. I can say that I have suffered from chronic pain for the last 7 years of my life. I have been under the care of a physician, I have had several surgeries, injections & implants, I have tried physical therapy and I have tried other ways to deal with the pain (massage, tai chi, yoga, therapists). I am in a much better place because of all of that & all the combinations that I have tried to get me to where I am today. However, I still rely on opioid pain medication to help me to do all those other things that allow me to have some quality of life. Without the use of opioid medications, I would not be able (or wouldn’t have been able) to work hard to find what helps me. They get me through the day. I believe that A LOT more work needs to be done to decipher who needs what, who can work/live without what. Opioid use and or the “need” for opioids has many gray areas….I think the CDC, Surgeon General, etc. are trying to make is simply “BLACK & WHITE”, and that is wrong. They need to put the money and the effort into this and find something that will work for all those effected by opioids, in whatever way/shape/form that is. I think there will be a huge increase in heroin use/sale for those looking to find something to replaced their medications. In turn…many more OD’s…

David Michael

Kay,
You are correct with your assessments . Going to web sites like this one and joining the US Pain Foundation can help you stay up to date on the good and the bad (mainly Bad). If you can start your own blog or page on Facebook you will notice there are a bunch of chronic pain sufferers out there who are looking to connect with and advocate for themselves and for all our good. I believe now that most of us who can, have to be advocates/activists to our best ability. I am lucky to have friends in media (talk radio) but I am slowly, by getting involved, meeting politicians, judges and physicians. We unfortunately have to help ourselves because our elected officials don’t live by the same rules as we citizens. Even when they are sick, many of them could care less about “we the inferior,” because “we” are just not intelligent enough to think “we” could possibly know whats best for “us.”
Have a pain free day.
David Michael

Kay

David Michael, pain scales are absolutely a farce! Pain is subjective, I realize that, and what may be a 3 for someone would be an 8 for another.

I think after all these years I have a pretty fair pain tolerance; any of us who live with chronic pain do. Pain becomes your norm, and even though it’s a constant, if we have medications and treatments to help, it can do just that – HELP us.

I know what *my* high pain level’s are if asked to rate them on the archaic pain scale of *1 to 10, 1 being no pain at all and 10 being the worst pain you’ve felt in your life*.

How many of us are sick of hearing that??? It really means nothing, since whoever is asking you likely has their own preconceived idea of what the numbers mean.

We DO need to do something, something that involves a large number is chronic pain patients. I’m willing to get as involved as I can, I won’t pretend that I know the how’s and where’s of doing it, but I’d we don’t, none of us will be getting our pain treated.

We have to stand together as one and develop a loud voice, we need to be heard.

David Michael

Bravo for Richard A. Lawhern, Ph.D. for his guest appearance on the Dr. Peter Breggin Hour. He did an excellent job. We need more media attention. I am finishing another page to be on Facebook called More Doctors Less Bureaucrats where you can find a link to the Breggin interview also. Although up and running for posting, it is not finished or promoted yet for another week or so. Remember the more media exposure regarding the awareness of chronic pain sufferers, the better. More media with the respect to the chronic pain struggle between patient/advocates like myself and lawmakers and others is crucial during this election year.
Double kudos for the US Pain Foundation.

Paul

I agree that muscle pain is a major problem. Also I see part of the reason for taking away opiates is to remove the possibility of people killing themselves in a painless manner. IE they just go to sleep and never wake up.

To me that means that they want people to suffer as much as possible, and that all compassion in society is gone. Reminds me of the fall of nations, when the morality is gone and the caring for your neighbors is gone from the minds of all. Then it will soon be chaos that rules the lands.

A note for others active in this thread. I have been invited to participate as guest on the Dr. Peter Breggin Hour on Internet streaming audio tomorrow afternoon. We will do a one-hour program focused on the impacts of the CDC’s revised standards for prescription of opioids in chronic pain. Dr. Breggin has a 30 year record of opposition to the inappropriate use of psychiatric drugs (see such books as “Talking Back to Prozac”, “Toxic Psychiatry” and “Brain Disabling Treatments in Psychiatry”). I did another hour with him a couple of years ago on the harms done to chronic disorder patients who receive psychosomatic diagnoses.

I would appreciate hearing from patients with a SHORT summary of problems you have had with being dropped by your doctors or forced into reductions of opioids that have worked for you for years. Please send your experiences to lawhern@hotmail.com. I will not attribute anything to individuals by name, if I use it on the air.

The streaming audio may be heard at http://tunein.com/radio/The-Dr-Peter-Breggin-Hour-p381723/

Stephen Rodrigues, MD

My 2 bits: Muscle pain characteristics:
If you are living in pain, the most common primary location of your pain is in the soft tissues of the body; The skin and bone, especially in the muscular system.
Every person will have muscle pain from life and living. This pain is in located in our soft tissue layers of the body.
Muscle derived pain is a masquerader, 100% real and 100% invisible to technology.
Muscle derived pain is very personal, private, random, elusives, ubiquitous and dynamic.
Muscle derived pain is isolation pain so only that person can feel their pain which is why these poor souls commit suicide so often.
The most common primary location of pain is scattered somewhere in many of your 750 muscles, 1/4th inch up to 2 feet in length all over the body.
It is not very common for pain problems to be primarily located in the bone, CNS, nerves or blood.
If your pain is structural and solidly located in any of these locations-bone, brain or nerve, the treatments are mostly vetted, valid and are very effective.
Muscle pain does not fit any these set classical patterns like the pain of appendicitis, gallbladder or kidney stone.
Muscle pain cannot be detected with any modern technology.
Muscular pain cannot be medicated completely away.
Muscular pain cannot be surgically removed in the operating room.
Muscle derived pain will usually have very specific termed diagnosis without a specific treatment plan which will end in the resolution of the pain syndrome.
Muscle derived pain will not go away all by itself, so if you are waiting for it to disappear it probably will not at this point.
Muscle derived pain is 100% treatable and can be eliminated with the proper treatments.
Muscle derived pain will only respond to hands-on PT and Needling options + a very involved wellness proactive program of self-care.
Muscle derived pain is negated because it is more profitable to try and fix these poor souls with treatments that are not based in the facts of biology.
Muscle derived pain is easily blamed on the person, who is lining in the pain simply because this is how rackets are organized and perpetrated on the public.
Muscle derived pain sufferers are all being misguided.
Muscle derived pain is not in physician curriculums so they have not idea of the concepts and reality of this category of pain.
Muscle derived pain sufferers are all bewildered, confused and most all are hoping for a “savior” from the elite scientist who also have no idea of this type of pain.

The only way out of muscle derived pain is to help yourself with the correct knowledge and evidence.

Thank you Janet , I signed petition with hopes we get enough in 30 days . And will spread the word with Bernie Sanders supporters as he is the only one on our side , since policy’s has taken precedents over people , and left for dead by our medical community’s and doctors ! Who is fighting for us ? Who is on our side here ? Frustrating ! What’s next protesting at the White House for us to be seen and heard .

Jamie

Janet Parker , is there a way for you to add or change the original wording of the petition ? Please please don’t take any offense ! But there’s a lot more I would add and some things I would word a bit differently !

I have distributed your link to 12,000 chronic face pain patients, and tweeted it to ~300 followers on Twitter, with a potential re-tweet audience of over 100K.

Janet Parker

I started a petition to the White House Can you help get it promoted and signed , it only has 30 days to get the needed signatures. https://petitions.whitehouse.gov/petition/suffering-chronic-pain. All this linking is new to me too so if you can help make sure it is linked right I would greatly appreciate it.

Janet Parker

We the people need to vote them out of office! We need to find out which politicians are behind this assault on chronic pain patients and get rid of them, They do not tell the truth only falsified information to get others to go along with their agenda. Alcohol is a much bigger problem in our county and they are not going after any of the people selling that on every other corner store and bar in this country.

Paul

I completely agree with you David, as these controls are to save the lives of young drug addicts. Those of us in pain, only use enough pain medication to mask the pain so we can go on with our lives.

However if someone wants to take enough of a pain killer to get a buzz off of it, that means to me that they are taking many times more at once than any pain sufferer will ever take unless they are trying to kill themselves to end their misery.

Reason I come to this conclusion is very simple, when someone is having illusions and other mental effects from a drug, in all studies that I’m aware of it is because they are damaging their brain. Also brain damaged people are far easier to control with some drugs than a normal person that only uses low levels of drugs for medicinal purposes. Ever heard of MK Ultra, I first found out about this from a few people that I had met years ago that were in the drug scene. They would and did take things that I would not even get near such as LSD, Mushrooms, etc. They seen things because the drug was damaging their mind, just as any medication can in higher doses.

I have met a number of people that have fried their brains on drugs, and I have to admit many of them are quite compliant (last one was the son of the owner of an apartment that I once lived in with my wife). That is unless they are on a bad trip and freaking out. I’m sure glad that I have not seen those people in over 20 years.

I have thought about pot myself, as it is from all indications less dangerous than things such as Tylenol. Have not tried it yet to cope with the back pain due to a couple of hit and run accidents that I was the victim of. That cause me balance issues, burning feelings in my legs and feet, and chest pain. That is in addition to the lower back pain.

Reminds me of the old saying “Might is Right” that is because the Government has the most and best armed people on the planet to enforce its agenda.

Janet Parker

I have started a White House Petition to get this issue sent to Washington, Please read and sign it and get everyone you know to do the same so we can stop this war against us and the doctors who treat us. https://petitions.whitehouse.gov/petition/suffering-chronic-pain

David Michael

I can(easily) believe the crazy nonsense of this government when it comes to trying to push pot on people. In Washington State they are getting ready to put up clinics for heroin addicts to come and shoot up in a fully staffed safe environment. Fresh needles and Narcan (in case you OD) are the free, probably tax payer funded(not completely sure), are provided for your drugging pleasure. It is a shame the government cares more for addicts which by the way don’t vote, than chronic pain patients like me who do vote.

David Michael

First of all the pain scale from one to ten is a farce. Your ten may not be my ten. And how about a doctor that asks, “are you a ten?” Do you say yes, then if you have to come back in because the pain is higher than ten, are you allowed to be an eleven or a twelve? Do you see the ridiculousness of the 1_10 scale hoopla? Pain is very subjective or is it objective? Don’t ask a doctor.

Debbie

Jaime…. I would ABSOLUTELY love to join you in a lawsuit! I initially injured my back, way back in 1979, long before the CT Scans were improved. Because they had to take the pictures in 4 different sections and hook them together, my slipped discs were not noticed until the scans were improved . They told me back then that I was a drug seeker and just needed a psychiatrist. Two years later, when the scans were improved, SURPRISE! I needed surgery, but by then I was stuck with foot drop and a failed back… I have been to a total of three different pain clinics, was followed up with therapy and mind-body stuff, and did everything that they recommended. I have had a total of 6 back surgeries, 2 brain surgeries but the only thing that helps me get up out of bed and semi function, was the pain medication. The DEA took that away last year and now I can’t go anywhere…
When I said I would try anything to get rid of the pain, I meant it. They were testing this new procedure where they open your skull and wake you up during the procedure. Then they stimulate the exact pain center in the brain that makes your back hurt and “fry” that area so that maybe the pain will go away. Like I said, I was willing to try anything to eliminate the pain! It worked for a few months…

Let me know if I can help with the lawsuit. I have a lot of time on my hands, you know?

Debbie

Debbie

Can you believe, that in the same year, the laws regarding marijuana are now open, but the ability for us truly hurting people can no longer get the required meds we need to even function? WTF!!!

Jean Price

Dr. Lawhern…I think a lawsuit is a fantastic idea, and have said so to this foundation several times! I don’t quite understand the lack of their response or the apparent lack of interest In pursuing this by them. I would believe also a civil liberties group would look favorably at our issues and legal concerns! Please let us know what we might do to assist this process. I actually am clueless about the steps! I recently discovered the foundation is NOT a non profit group, and I was greatly surprised by this. I’m sure some areas of assisting us are weaken by this status of theirs. We deserve strong, direct, clear, active, and results oriented support, and legal proceedings may just be the only way to hold those who have created theses problems accountable for their misinformation and their less than compassionate goals! You have been such a supporter of those with chronic pain, and I so applaud any and all of your efforts. Dave has also worked tirelessly to help those of us limited by pain, and I regard his motives as to be honest and forthright, like yours…and definitely stemming from human kindness and personal knowledge of our struggles. Thanks for all you do and the direction you are looking at now!

Kay

Jamie, as much as I’m against lawsuits, I’m beginning to believe that you and others have an important idea going here, and I for one would be 100% for it. I am allergic to MANY medications, mostly antibiotics, and the one that worked best for me was Levaquin, which I took for the frequent respiratory/bronchial infections I get due to worsening asthma, and UTIs that I’ve been prone to since a young age. A few years ago, AFTER I’d had several surgeries for tendon tears, etc., it was proven this drug cause tendon ruptures, though mainly Achilles ruptures. However, my pulmonary, pain and primary care doctors have told me not to take any quinolones now. My point in sharing this is that there has/had been at least one mass tort and some individual suits with awards to patients and I did not bother to look into it. In hindsight, maybe I should’ve because I’m left to deal with the effects. But the fact is, no amount of $$$ can give you your life back. That said, we’re living in an age of such political correctness, *black lives matter*, *white lives matter*, *illegal immigrants matter*, *food matters*, *land matters*……obviously I’m being sarcastic at this juncture. BUT……*people living with chronic pain matter!!!!!!!! I’m tired of being made to feel like a pariah. The stigma of being a chronic pain patient is hard enough to live with. We are always judged and assumed (unfairly) to be addicts or drug seekers. With so many other (less important) issues being pushed into the forefront politically, medically and everywhere else, it’s time the issue of chronic pain is addressed as a REAL and SERIOUS illness/disease/syndrome…….whatever you want to call it. As an example, in 2005 following hurricane Katrina, a friend’s dog bit my hand and nearly ripped my finger off. I had only been on long term pain medications a couple of years, if that. I immediately went to the ER. I was completely honest and up front about my medications – something I can honestly say I ALWAYS am – and the admitting nurse said to me with a huge amount of sarcasm *don’t tell me, your pain level’s a 10 and you want pain meds, right?* I felt as though I’d been slapped in the face. I told her *NO, I know what a 10 is, this hurts but I’m more concerned with saving my finger!* As it is, it took 4 months to heal. Another recent experience: following my last foot surgery that I mentioned before where my arch bone was plated and fused, I fell in the bathroom around 2 AM Valentines Day morning. I was using one of those knee walkers and they are wonderful aids but they don’t transition well from hard floors to carpet/rugs, and back. I fell very hard against the toilet, all on my left/left back and I couldn’t breathe. I also hit my head on the toilet bowl. I was afraid I’d broken ribs and would… Read more »

Jamie, I’m working toward some of the same goals you are. If you’d like to chat, feel free to send me a note at lawhern@hotmail.com. You may also need to think about finding or founding a Non-Profit Organization to fund the lawyers. You’ll be facing the same kind of resistance that Big Tobacco put up to defend its profits, and perhaps some of the same costs — like millions of dollars.

I wish you well.

Abagail S

Where are the statistics on INTENTIONAL OVERDOSES??? That is what I want to see!!! Intentional OD’s like one of this forums post’s said – you just want the pain gone! If you know this will be your last script (same thing happened to me in 2010 when Ohio passed state laws severely limiting Doctors, and punishing pharmacists that fill scrips by stripping their licenses even more commonly!!) I’ve contimplated ending it so much over the past 11 years. The pain, the isolation, loss of friends, work family that after awhile people just stopped texting, calling or stopping by. When I did have to back to work, the pain medicine worked fairly decent – I could at least make it thru a day at work. But after my pain dr dropped me like a brick in 2005, and after my prosthetic jaw was implanted in 2012 – it hurt so much more and because of these stupid laws I 2ould drink so much every day when I would get off work just to fall asleep and not feel anything. How I’ve survived this I don’t know – but glad I did. It doesn’t take a pill to die. You can OD with OTC’s, a gun (I sold my rifle when things were getting rocky in my life), a high speed run down the highway into a concrete barrier – anything else you can find and end the pain & suffering, mental anguish & loss of jobs, friends & family. The job I used to do before having to go on disability – I’d seen it all. So…..many of these “unintentional” OD’s were simply a person’s way to simply stop the pity, to stop the begging – and stop the pain!!! The general public sees what the news media gives them. Scenario: “40 year old father overdoses on opioid pain medicine”, that they neglect to mention in this scenario he is well below the poverty line, living with or off the charity of others, or maybe selling a few pills just to put some food on the table or keep the lights on. So say this same person goes to her/his Doctor (who is not giving the this patient the proper treatment/dosage. After so many years, what is there to live for anymore when everyone thinks you’re pathetic, a junkie, etc….. When all you really want to do is just be remotely comfortable. I e heard this story time and time again. I have a friend who can barely walk after being flattened by two barges on the Ohio River. The poor guy will never experience certain things in life again. Then no one would help him with agonizing pain in his back, pelvis, legs, etc – so he now has to drive almost 4 states away just to get medicine that allows him just to function. He does not get high – he just wants to feel normal. But I know he will not be able to handle this much longer… Read more »

Cheri Hall

I agree that we all need to come together and sue for leaving patients proper treatment of pain. Even my sick dog gets better care than I do.
I’ll be glad to join in a class action suit! However, this takes many years to get heard. How do we make it that long?
There is no hope for any enjoyment or quality of life.
There is nothing being offered in place of these med either. Most of is have been through everything out there a few times. If there was something that worked, we would not be on these meds!
This is so rediculas.

David Michael

We must organize with one voice in unity to destroy this monitoring program that violates so many of our rights. Check it out:
https://www.alec.org/model-policy/prescription-drug-monitoring-act/

Jamie

I was just recently speaking of a class action lawsuit with a lawyer friend . I’m in the midst of looking at laws and finding a big enough lawyer that’s willing to take the case !

David Michael

Look at how the government is breaking the right to privacy laws and also probably our civil rights with this monitoring program. This ridiculous activity ensures us all that we are considered criminals. They (DEA/CDC/FDA) came up with this wonderful illegal piece of legislation. Not even illegal aliens are suspected of being worthy of this type of scrutiny.
https://www.alec.org/model-policy/prescription-drug-monitoring-act/

Nancy Nedoma, RN

This is an excellent statement noting the needs and rights of patients in pain. As an RN for 42 years, I really think you might have a broad appeal within the nursing community and garner support for your organization. You should consider submitting this to the American Nurses Association, American Journal of Nursing, American Association of Critical Care Nurses, Hospice and Palliative Care organizations, etc. It would help raise professional awareness to not lose sight of why these medications are truly needed by appropriate patients.

jaskadow

Frankly I think the government and insurance companies want us to die. In the words of Ebenezer Scrooge., ” let them die and decrease the surplus population”

This is a plan to thin out the herd… For the sake of someone’s almighty Bottom Line, of course.

I wonder what they’ll do when they need a painful surgery and have serious pain, or if these government officials and insurance adjusters develop chronic pain? Oh wait, those with money or who are in high places can always find the drugs.

We need to fight back and the only way to do that will be to organize and file a class action.

This means we pain patients have to get off our butts, stop talking about it, and actually do something instead of sitting back, depending on others to do it for us. Only then will this problem be resolved.

Cheri Hall

Some of us just clearly know that we can not handle any more pain. It’s hard being on this side and knowing that your quality of life is shot and it’s bout to get a lot worse. Ot becomes much easier to just let go. It seems there are no other options. Others are playing God with our lives. We have endured every kind of cintraption, pain shots, electric stimulation, mind/pain control and even psycotherapy known to Western medicine. Exactly what is it we are fighting to live for?
I’ll take quality over quantity any any day.
This doesn’t to seem to matter at all to those making choices for us. We have no say in our life any more. I see clearly, this is the last say in the quality, or lack, of our own lives.What is left except to say goodbye while we still have some humanity left in us???

Think about it…what exactly would you choose?

Allow politicians take over your healthcare…
WE ARE SAYING…NO!!!!

Why can’t you hear us???

Kay

Paul has said it very eloquently. After months of reading and hearing about the CDC and their proposed actions, it’s come to fruition here where I live. I saw my regular pain doctor last week and instead of being his usual friendly, concerned self, was very reserved and nervous and opened with the CDC this and the CDC that, and said pharmacies had called him and told him he has to prescribe less *breakthrough* medications-less RX and less quantities in the RX. And then he said there’s a drug that he wants me to try WITH my current meds, and will *do a quick review visit in 4 weeks before writing my next RX*. He said I’d be hearing from someone about it – which I did – and the drug is levorphenol, I am to receive it by UPS. During the same week my husband had rotator cuff surgery and the nurse told me to speak to the doctor about his meds, since he would need something stronger than what he’s taken for several years. Immediately the doctor cited the CDC, told me what he prescribed was the strongest he could give him (the same thing he already has so we shredded the RX) and tried to convince me that hydrocodone and oycodone are the same drug! When I told him NO, they are not, he told me I didn’t know what I was talking about! A few months ago I had 2 fusions in my arch, which had collapsed from the exact surgery 3 years prior. I’d broken 6 screws in the hardware and was actually walking ON it all and in great pain. At that time my pain doctor made sure I had adequate relief. I also have CRPS in that limb. Recently a neighbor had the same surgery, had the same surgeon and he gave her an extremely light dose of medication; when she went to get staples out and asked for a refill, she was refused, again the CDC was cited by the doctor. My husband and I are in our 60s; I’ve had nearly 20 surgeries alone since 1996, including 3 joint replacements. I’ve had 3 spinal surgeries, have DDD, stenosis, herniated disks and bone spurs, arthritis, and degeneration in my hip, among other things. My husband was born with spondilolysthesis, spondylosis, has just had one shoulder operated on, will need the other, and has severe neck problems including several herniated disks and arthritis. I had to retire 8 years ago; my husband is retiring this year because we cannot continue to do our jobs. If anyone thinks it’s a picnic living on Disability, think again. I’ve been seeing our pain doctor since 1996, we’ve always had a great relationship, I am tested for compliance regularly, have done everything he’s suggested, including epidurals, sympathetic nerve blocks for the CRPS, trigger point injections, prolotherapy injections, PT….you name it, we’ve tried it. To find out after this amount of time that my medications are going to… Read more »

Kathy, before we give up, don’t you think it’s time for the millions of chronic pain patients to sue the government for medical negligence and harm to patients? If you could contribute to that, would you?

Janet Parker

Thank you for the information, I will draft a petition as soon as I can, I can only write when I am not in so much pain, it severely affects me thought process , But it will be in the next couple days it is important to do this in this election year to stand up for our rights.

Susan S

I have Ehlers Danlos Syndrome and suffer from a long list of secondary problems brought on by EDS including fibromyalgia. I have had to have open cranial surgery for 2 brain anueryms, numerous surgeries on different joints. My back is twisted and very painful. Neuropathy runs down both arms into my hands and both legs into my feet. EDS is a genetic degenerative disease that you are born with. I have seen many family members deal with issues from EDS. This is my life so I deal with it the best I can. I see my doctor on a regular basis and take my pain meds as they are prescribed. I can understand the mindset of the pain being so bad you justify taking something extra on occasion. I also understand just how dangerous that can be. I know of no one personally who gets opiods for legitimate medical issue overdosing. But 4 years ago my step-nephew, at the age of 21, died from an overdose from presciption opiods prescribed form a doctor at what is called a pill mill. Stop the pill mills but do not take away pain meds from those of us who really need them for pain.

TERESA BRATCHER

I live in the state of Kentucky which has horrible statics with opiod abuse and trying to find a pain management doctor that will prescribe opiods is like looking for a needle in a haystack. It doesn’t matter if you have been compliant with any and all methods that ask of you to make sure you are taking as prescribed. It just seems all doctors are scared they will loose their licenses to practice. Please let me add that there are a few left that are willing to help but I wonder for how much longer. We pain patients, doctors and any and all that will take a stand need to do it NOW !! We must fight for our right for proper pain control. A majority of all of us has tried all the shots, blocks, PT, Biofeedback and etc…. and at the end of the day the only help we get to help us be productive as human beings is opiods. It should be a decision between doctor and patient and not the government. It is unfortunate that many have lost their lives because of opiods but most of all chronic pain patients take their medication as prescribed. We must take a stand NOW or tomorrow may be too late. Good luck to all you pain warriors out there!!! ❤

Patricia Brodersen

It is heart-warming to hear my own thoughts put to the public. I have suffered from chronic pain for many years. After going through my insurance company’s pain management I was sent back to my md and that was when the trouble getting the needed meds began. Kaiser has decided that two of the medications I had are not to be given any longer. There is no substitute for the right medication. I am not an addict. I am a pain patient. I wish that more people understood the difference. Even my family talks about “when I don’t need that medicine anymore”. This isn’t likely to happen since my condition is not curable. Thank you for all you do to dispel the idea that anyone taking a narcotic is an addict.

Paul

I see the cause of this, and it has to do more with worry about someone possibly getting stoned, than being in so much pain that death is the better of all options. We live in a society that more readily believes the lies that they are told so that government officials can exert control over people. The people in government think that fixing a problem is for them to control it, even when their control is causing the problem in the first place. I care more about my family than about if someone is possibly getting stoned to deal with life. Also I do not believe that any of the overdoses are overdoses or accidental. That is because opiates are a preferred way of suicide, When someone takes a lethal amount of an opiate they go to sleep and never wake up. Death from other pain killers such as those that are available over the counter cause an agonizing death to those that can no longer stand being under prescribed pain medicine. A much quicker way would be suicide by police officer, all they have to do is think that you have a loaded firearm pointed at them. It could easily be plastic. I do see a solution to the problem, and that is to quit treating people that want pain relief as addicts seeking drugs. Also most importantly treat chronic pain as a disease of the nervous system witch it really is. Problem is that too many think that it is a psychological problem and that the pain is people imagination. It is because of the deliberate suffering that is caused to people I hold no hope for the future of this country and many others. When people are treated as trash just because they are not being obedient to their slave masters, and thinking and acting exactly as they are suppose to act. George Orwell was right about what we have become, and that is a country along with many others where people believe the lies programmed into them by the media etc that they no longer think. Soon we will have thought crimes, and all of us will be found guilty and sent to reprogramming locations. Also I have to ask when has this ever really been a free country? If a right really and truly exists we would not have to fight for it and it could not easily be taken away. Just as far too many think that just because we want to get away from pain we are just a bunch of junkies looking for a high. I will say that I’ve never been high in my life and the only time that I had a really bad trip from drugs was from those prescribed from a doctor because they felt it was a safer alternative to norco. Norco in higher doses has only slowed my motor functions, but has never made me high. Cymbalta and other such medications are the only things… Read more »

Pamela Richards

I know with the pain I endure, there are sometimes I wish I was dead. I lost my family, my kids, and my grandkids, cause though I look good on outside they assume I lie which puts me in deeper depression. Maybe the overdoses weren’t a mistake at all, maybe they gave up after no one believed them. It kills me to live without my grandkids and kids, thank god I have a husband who is always there or I would be gone too. Just a thought