Chronic Pain Data – The Story They Tell

Chronic Pain Data – The Story They Tell

Data that are being cited about opioids, addiction, suicide and overdose may not tell the whole story. That’s the conclusion that a health rehabilitation expert and frequent commenter on chronic pain treatment believes.

Terri A Lewis, PHD

Terri A Lewis, PHD

Terri Lewis, PhD., who is a contributing editor to the National Pain Report, has been looking at data. She thinks the data tell a story different from the current conversation about addiction.

She prepared some data in a PowerPoint presentation that can be viewed at the end of the story.  She distributed this information to media sources because, as she said, this week would have been her father’s birthday. Her father died at the age of 57 (and suffered from chronic pain). Her son also suffers from intractable chronic pain. As a daughter and a mother, she fights for the chronic pain patient.

As she said, “I put this (data) out to acknowledge their struggle, and everyone else who deals with this process of trying to live on this planet under the nanny state and also to suggest that we are not learning what we need to learn.

She also agreed to do an interview on what she has uncovered.

National Pain Report:  You are indicating that more off label prescribing is occurring and not being followed for impact. What do you believe it would show if the data were being properly analyzed?

Terri Lewis, PhD. In the last few days I have intensively reviewed the CMS Medicare Part D data in their newly released opioid tracking tool; the mortality statistics in the WONDER system at CDC; a number of recent research articles in JAMA that decompose prescription data from direct sources; and after listening to consumers deal with the effects of prescribing protocols foisted upon them, I have to say that I am compelled to question the obvious.  The top 50 drugs prescribed are loaded with the potential for adverse events and drug: drug interactions that our systems do not routinely detect.  Off label prescribing is associated with greater rates for serious adverse events, than for FDA approved uses. Off label prescriptions are often dispensed to the most vulnerable people, including those with chronic pain – gabapentin and tramadol are prime examples.  Bother are associated with increased rates of suicidal ideation and frequently they are prescribed together, particularly when the physician decides to step the patient off of opioids.  In too many cases, there doesn’t seem to be a connection between the act of prescribing and the consequences of prescribing. And that may be something of great importance when one considers that 63% of those who deceased in CDC’s 2013 mortality statistics had prescribing practices associated with polypharmacy or the regular use of 5 or more prescriptions in the month prior to their death.

National Pain Report: “From a patient’s perspective–drug to drug interaction is a problem, one they don’t even recognize at times.. Shouldn’t the patient be talking more with doctors and pharmacists (and vice versa) on this issue?

Terri Lewis PhD. It’s hard to get a word in edgewise in a 15 minute office visit.  And when your pharmacist leaves the conversation to a clerk who invites you to sign on the dotted line that you got a piece of paper (counseling), consumers may never make the connection between physical, mental or cognitive distress and their prescriptions.  This is made even more difficult with mail order systems.  Importantly, we are measuring the numbers of scripts written, but patients can tell you that they are almost never asked whether the scripts that are written for them produce the anticipated result.  In many cases they don’t and that causes the working alliance between physician and patient to crack.  If the physician is measuring adherence and conformance and asks that you pee in a cup, but can’t connect it to treatment outcomes, you’ve got a problem. And this is too often the case.

National Pain Report: You study the issue of and are a eloquent spokesperson for how our health care delivery system is injured if not downright broken. What do the data you provided indicate from that point of view and how would you remedy it.

Terri Lewis PhD. “The very first thing we need to do is open up the national conversation and move it away from the four camps that have emerged – addiction, chronic pain, and ‘them’ – physicians and policy makers. First, because we may be having entirely the wrong set of conversations and while we are talking around each other we aren’t talking to each other, so there is no productivity.  Second, we have to come to the table and honestly examine the system in which we are working – revisit the questions and assumptions, and insist on an open dialogue with input from all of the stakeholders to this system.  I am also a care partner to my son who has severe chronic pain and depression – and we are fighting the suicidal ideation battle- so I have current, fresh experience with how harmful repeated failure is.  We cannot improve care unless we become much more skeptical and much more willing to bring all of the stakeholders to the table. Examine the collective experience, and reframe this conversation to one that is focused on the impact of our practices.  We need to let the data talk to us, address the logical fallacies, and implement continuous improvement strategies – a Manhattan Project as others have described it.  Most importantly, we need to ask patients how our decisions affect them.  We have nothing without this.”

“What we have now is dangerous.  And we are playing a dangerous ‘us against them game’ that will harm us. By 2030 – which is just around the corner – we will be a super-aged population – what that means is that half of the population will be aged 65+ in years and among this group, 2 or more chronic health conditions will be the reality of their daily lives.  Our current lack of uniform access to health care and ‘drive by’ prescribing practices will hasten this process and increase the likelihood that this group will be even sicker than we might imagine.  We haven’t even accounted for adapting our health care practices to address an increasingly aged population.  This is of particular concern because we are creating large numbers of newly injured every year with our current health care design.”

“We are in trouble. And we don’t know it because we are so busy talking we aren’t listening. We need to use this opportunity to learn, improve our practices, and prevent and reduce new harms.”

The follow data was adapted from the PowerPoint presentation that Terri Lewis, PhD. sent to media outlets:

  • We have new tools and new findings to explore this controversy.
  • Between 1999 and 2012, the reported use of prescription drugs across 18 drug classes increased by 8% to 59% of all adults. If these, 11 drug classes were responsible for this increase and included antihyperlipidemic agents, antidepressants, prescription proton-pump inhibitors, and muscle relaxants.  The off-label prescribing of FDA approved drugs for off label applications is associated with serious adverse events.
  • In looking at the top 50 most commonly prescribed drugs in Medicare Part D’s program (681K prescribers in 50 states) there is plenty to be concerned about with regard to off label prescribing and drug-drug interactions.
  • Should we be asking whether polypharmacy and drug-drug interactions are common among the top 50 prescribed drugs? Whether the likelihood of adverse events might include accidental poisoning and impaired judgment? Whether suicidal ideation might follow when risky medications are prescribed off label for illnesses or injuries  that by themselves, promote the onset of chronic pain?
  • 100,000,000 people live with chronic pain (IOM,1999). Why aren’t more affected persons with chronic pain negatively affected by opioid prescribing practices? What do we know about the impact of our prescribing practices for opioids alone, or opioids prescribed in combination with other drugs classes? What do we know about the impact of stepping off opioids onto other drug classes prescribed off label for chronic pain? What is the relationship of prescribing practices to consumer function? Are we confusing the act of prescribing with management of outcomes?
  • We don’t know as much as we need to. I guarantee you this.

Top 50 prescriptions

Table 1.

The drug combinations with the highest event prevalence (Prev. = a/(a+b)) in STRIDE, for each event.

AMIA Jt Summits Transl Sci Proc. 2013; 2013: 83–87.
Published online 2013 Mar 18.Drug combos4

Data Sources

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Authored by: Ed Coghlan

There are 21 comments for this article
  1. Sally at 1:05 pm

    I am also a victim of being over prescribed many drugs, to try and do the job of opioid pain relief. They caused me all sorts of problems and MS symptoms. With my new drug induced symptoms I was sent to more specialists and given more tests. I can’t afford to pay my medical bills from all of the tests over the last year. I decided to wean myself off of most of my Meds prescribed for pain, from herniated discs and Fibromyalgia. I was on Cymbalta, 2100mgs of Gabapentin, Nortriptyline, Xanax, Flexeril and more. I went through hell weaning myself off of Cymbalta and it didn’t do anything to help me. I’ve spent thousands of dollars experimenting on dangerous prescribed drugs, when only one drug ever actually helped me, hydrocodone. Now I am on Norco and 900 mg Gabapentin, with an occasional Xanax for sleeping and Flexeril at bedtime. They also tried 2 spinal injections on me, but they offered little, temporary pain relief. Once the pain doctor got on board it was easier to just get a set amount of Norco every month, but I have to pay for a specialist visit once a month to get my refills and I have to take the prescription exactly as it says on the bottle or they will not refill it. My body doesn’t follow their pain schedule and they are forcing me to take it this way. If it doesn’t show up in your urine sample they can take away your prescription, so I have to take it within a day of my appointment, no matter how I feel. This system is so wrong, it doesn’t allow you to take any kind of break to see how you feel. Then they assume you don’t need any pain meds if you can go any amount of time without.

  2. Deb at 9:37 am

    this horrible problem of crack down is affecting the dentist too. i’ve been putting off having my teeth pulled. for pulling 15 teeth they say all the pain meds i need is 12 of 5 mg hydrocodone. i’m not sure i can stand laying in bed for a week crying.

  3. Terry T at 1:58 am

    I seen Candidate Chris Christy had an article on FB about drug addiction.. Fighting drug addiction.. So far I have not seen ONE candidate mentioning chronic pain patients with even proven pain conditions.. So I wrote on Christy’s page, because I see he is replying to people … What I wrote is similar to what I just posted here. Chris Christie Clearly there is a problem with addiction. The pill mills of Fla.. The police shows on TV show this clearly. —— A bad side effect of this crack down going on-.People with chronic pain are being left to suffer. A constant battle for pain help and relief. People like me with RSD/CRPS and Arachnoiditis. Are having their medications cut, or like me told completely CUT OFF. My RSD/CRPS rates higher then Cancer for pain. This rating is on the Mcgill pain chart the Dr’s use to judge pain. One problem not being addressed is some kind of standards to deal with real proven bad nerve pain. Dr’s have become anti pain medications.. I think the rise in illegal drug usage, is ALSO chronic pain people seeking to self medicate. Directly due to this crack down.. Also. not discussed is the cocktails of drugs mixing now given to pain patients.. Our military VETS might be a very good example of this.. No real studies have been done what happens MIXING all of these drugs. There has been a giant increase of Veteran Suicides. Veterans and chronic pain patients are not being given just an opiate. They are being given cocktails of many drugs. I see a pattern as they increased mixing so many drugs. Suicide has increased, as they ADDED mixing so many of these drugs.. Many have black box warnings of suicidal thoughts etc.. CLEARLY as part of the WARNINGS.. Not regular warnings. “Black box” warnings. There is also very very bad documenting by hospital systems and Doctors.. Of what bad side effects a drug may have caused you. They rarely add this to a persons medical record. They just switch drugs and say try THIS… One of the first drugs i received after being hurt, was vioxx.. Vioxx still is not added to my medical records for causing me such bad side effects. The maker of this drug received one of the biggest fines ever. Doctors and hospital systems, only seem to care about a drug you have allergic reactions too… If the reports and stats are correct.. So many of the school type shooters have also been taking many of these same types of drugs… With computers , it should be very easy now to document on anyone medical records.. What BAD side effects each kind of drug may be causing so many people… Why isn’t this added to medical records? Face book now is getting a lot of pain groups.. So many many in the groups are mentioning the increased massive pain they are being forced to live with.. What are so many of us with severe chronic pain suppose to do now? They are speaking out and no one is listening.. Both Democrat and Republican want to tackle the drug problem.. But NON are mentioning the bad effects this is having on chronic proven pain patients. With RSD/CRPS the insurance company has written my Dr.’s Telling them I no longer need any medications.. RSD rates higher then Cancer for pain. The McGill pain chart clearly shows this. The Government is after the medical people. Insurance companies, with their Utilization medical reviews.. Some Doctor who has NEVER seen you as a patient. Decides what medical treatments/medications your NOT going to receive. This is who decided they were no longer going to pay for my medications… They have decided my RSD CRPS does not need any pain or medications..How can they even justify this, when my medical records clearly show my painful conditions..Sorry for being long winded here. But if your dentist told you to live with that tooth ache forever with nothing.. Would you speak up? If you look at an RSD or Arachnoiditis site on Face Book.. You will see many with proven bad chronic pain conditions.. Being denied or cut off of their medications.. I think its pretty clear what these people will be forced to resort too.. Including more suicide.. Due to no help in finding relief for proven chronic pain..The stats already seem to be showing this. middle class people, who would never use heroin. Now helping the rise in usage. People who have private insurance.—– Being managed under a Dr’s CARE seems like more common sense.. Verse how scared Doctors are becoming- to even prescribe these medications..—— ONE more thing.. Our pain patients and Veterans now being given these cocktails of many drugs… Do the dentist in USA.. Do the same for proven tooth ache pain?? I am not talking about people who have a back ache seeking drugs.. People who have proven bad nerve pain. Like a tooth ache .. Please help these veterans an chronic pain patients.. We are being pushed aside and left behind to suffer badly due to this crack down on medications… Many with Arachnoiditis like I have. Are NEW mothers who developed this from epidural shots while delivering their babies. Now being forced to try care for young children, while being forced to suffer with massive pain.. This is 2015.. An our medical industry does not have a prescribing chart… LIKE Arachnoiditis or RSD… << Chart that tells Doctors these people have a PROVEN painful condition..These conditions are not going to just go away… So it is OK to give some conditions certain medications.. And why aren't Doctors an hospitals adding the BAD side effects to everyone medical charts.. How can they track a DRUG like Vioxx, That killed so many people… I hope I have made some wise points here.. It would be nice to hear a politician who wants to fight drug abuse raging in our nation. But also wanting to HELP those with proven bad conditions… Thank You for your time here. I see you actually reply to people. Very good Chris Christie … What is causing the BIG giant increase in Veteran committing suicide.. Could it be related to these COCKTAILS of these drugs..?? Off label usage of cocktails of them.. And Prayers for the people of Paris. Is it OK to post the page I commented on to Christy? I hope I am not breaking any rules.. So far I see NO politician caring about the effects this is having on chronic pain patients.. https://www.facebook.com/govchristie/videos/10153221301264135/

  4. Terry T at 1:52 am

    Sorry I am not a writer– Cross posting what I wrote about this in a group I belong to on FB—–Thank You Terri One problem I am having now. I repeatedly try to add to my medical file. Which drugs have effected me badly. Plus what bad effects I have had. I can not get this done. The very first time was with Vioxx. It’s still not listed as a drug that effected me badly; How will the medical industry follow side effects properly if Dr’s and hospital systems refuse to add this information to patients medical records? Some of the drugs I have tired reporting are black boxed with suicide warnings. I experienced this while trying some of these meds.. I began bringing in my list of meds which CAUSED me bad side effects, each Dr appointment. Dr’s kept offering and making me repeat medications that caused me super bad side effects..I brought my list in so this would stop. So many times I have to repeat what the drug did to me trying it many times before..Dr’s have not monitored me well when trying new drugs. An refuse to list the bad side effects I have had.. How can the FDA or drug companies monitor drugs bad side effects? i would think, this should be easy. A medications form for pain. Which meds can be tried, an which worked or didnt work. Which had side effects and how badly? Simple check list on a computer.. E scripts appears to be gathering data on medication usage. But not tracking why someone quit taking certiant drugs or had replacements tried for pain…?? Vioxx BEING the FIRST one effecting me badly.. The Dr then refused to stop giving it to me.. For probably 6 to 8 months… Basically mentioning this is what is BEST for back pain… COUGH.. Ended up with biggest fine ever to a drug maker.. NOW I still get those 10 question depression tests.. Ends up a battle over and over explaining how anti depressants caused me so many side effects.. Especially bad depression… Dr can NOT refer back to my medical records about this. Because Dr will not report the problems I had from these drugs…ugh…. I see most people just accept and try what the Dr offers them.. Not knowing they are repeating the SAME types of drugs again an again… I did this for to long, Not looking up or knowing about drugs … Does anyone else’s medical records, SHOW which drugs you complained about, An what bad effects they had on you? My Dr’s will only list a drug i am allergic to.

  5. Terri Anderson at 4:29 am

    I agree that the majority of overdose and/or suicide deaths involving polypharmacy are extremely difficult to differentiate, and yet we find statistics quoted by PROP and the CDC that make no mention of any other prescription medication, other than that of an opioid — unfairly laying the sole blame on one medication in order to further biased agendas. In my opinion, data can be interpreted any way the wind blows, and skewed statistics have been pushed on the public by many within the “pain” industry in order to push their agendas.

    There are many other fundamental problems that that need to be addressed in this discussion on pain, opioids, overdoses and addiction.

    The first glaring problem is how pain is categorized. Not all pain is the same.

    The current system of rating pain is archaic. Assessing pain is much more than determining whether pain is acute or chronic, and assessing whether our pain is a level 7 or 8 (on scale of 1 to 10). I sense that many practitioners are simply going through the motions. This exercise of rating pain on a numerical scale has minimal value to advance the understanding of our individual pain conditions. For starters, it would be helpful if practitioners would differentiate centralized pain from peripheral pain conditions in the initial pain assessment.

    The other elephant in the room is patient harm. Powerful testimony was given at a July 2014 Senate Subcommittee on Primary Health and Aging: “Preventable medical errors in hospitals are the 3rd leading cause of death in the United States.” The Chairman of this Senate hearing stated: “Medical harm is a major cause of suffering, disability, and death – as well as a huge financial cost to our nation.”

    The Journal of Patient Safety reports: “as many as 440,000 people die each year from preventable medical errors in hospitals.”

    Propublica recently published the “Surgeon Scorecard.” Of course there is controversy regarding the methodology because it reveals the death and complication rates for surgeons performing one of eight elective surgeries including cervical and lumbar spinal fusions (Medicare). Propublica claims: “This safety improvement opportunity – enabled by improved measurement – has never been more timely, as new studies suggest that inpatient safety problems may result in the death of over 400,000 patients a year and may result in more than 6 million injuries per year.”

    The more insidious problem is unreported adverse events taking place in outpatient settings. Severe injuries, such as adhesive arachnoiditis, are grossly unreported and undiagnosed/misdiagnosed because there are no mandated adverse event reporting systems (GAO 2000).

    Drs. Landau and Nelson (2000) reported that “Accidental intrathecal injection occurs during epidural therapy in about 5%-6% of procedures; it is now generally agreed that accidental intrathecal injections are dangerous.” They also claim that less than 1% of adverse events are ever reported!

    Bloomberg (2011) and Medscape (2014) reported that approximately 9 million epidural steroid injections (ESIs) are administered each year. If the accidental intrathecal injection error rate is 5 to 6%, then this results in 450,000 to 540,000 severe adverse events each year. This does not include other potential complications such as stroke.

    It is difficult to track the numbers of ESIs paid by private insurers including Aetna, Blue Cross Blue Shield, Cigna, Humana United and others. Federal and State Workers’ Compensation programs are effective at tracking types of occupational injuries, but data is difficult to access regarding specific medical treatment due to HIPPA laws. Adverse events are even more difficult to track, but none the less, they are occurring and they are not reported.

    Severe adverse events (caused by spinal surgeries and spinal injections) are problematic because there is typically a delay (in months and years) in the onset of neurological symptoms as scar tissue forms. Scarring in and around the spine alters and obstructs the flow of CSF (cerebral spinal fluid) which permanently impacts the central nervous system. There are no standards to measure CSF flow characteristics, which is yet another reason why serious adverse events are not recognized and misdiagnosed as Fibromyalgia, Failed Back Surgery Syndrome (FBSS), Post Laminectomy Syndrome, and many others presenting with a similar list of neurological symptoms.

    Not only are millions of steroid injections performed each year, but there are also growing numbers of “therapeutic and diagnostic” injections, nerve blocks, discograms, neurostimulators and pain pumps. Take a close look at the numerous recalls on the FDA website, especially Medtronic’s neurostimulators and pain pumps. Again, most of these complications go unreported and undiagnosed because there are no mandated adverse event reporting requirements.

    Consider additional injuries caused by epidural anesthesia. The British Journal of Anaesthesia reported on failure mechanisms for these spinal injections in 2009:

    “Dealing with a spinal anaesthetic which is in some way inadequate can be very difficult; so, the technique must be performed in a way which minimizes the risk of regional block….Thus, practitioners must be aware of all the possible mechanisms of failure so that, where possible, these mechanisms can be avoided. This review has considered the mechanisms in a sequential way: problems with lumbar puncture; errors in the preparation and injection of solutions; inadequate spreading of drugs through cerebrospinal fluid; failure of drug action on nervous tissue; and difficulties more related to patient management than the actual block.”

    “Most experienced practitioners would consider the incidence of failure with spinal anaesthesia to be extremely low, perhaps less than 1%. However, figures as high as 17% have been quoted from an American teaching hospital, yet most of the failures were judged to be avoidable.”

    Many young mothers complain of fatigue and burning leg pain following epidural anesthesia during childbirth. Many are diagnosed with Fibromyalgia, which affects more women than men. I wonder just how many of those cases are misdiagnosed and unreported adverse events permanently affecting the spine (alteration of CSF flow). I’ll leave it to readers to add up the numbers of epidurals administered on an annual basis, and then multiply by the potential error rate, which could be as high as 17% in some settings.

    This evidence points to millions of unreported serious adverse events permanently altering the delicate tissues within the spine in both inpatient and outpatient settings every year.

    In Montana, we are investigating the numbers of overdoses, and we have discovered that intentional suicides are counted towards “over-doses.” There are no incentives for family members to report suicide as the cause of death, as this may null and void insurance benefits.

    Why are federal agencies (DOJ, DEA, NIH, CDC, FDA and SAMHSA) focused on 16,000 “over-doses” from prescription pain medications when preventable medical harm is now the 3rd leading cause of death (with estimates over 400,000 Americans dying each year in hospitals) — never mind the disastrous and concealed numbers of permanent disabilities caused by preventable medical errors?

    Just maybe there are too many competing interests including pharmaceutical companies promoting newer (and more expensive) drugs, device manufacturers pushing their latest devices and implants on pain patients, and of course, the over-use of epidural steroid injections, which are now pushed on Montana pain patients as “precision diagnostic interventions” under the “Know Your Dose” campaign.

    One honest physician shared with me that there are no profits in prescribing opioids as this treatment comes with a significant administrative burden. In fact, he shared that his Management pushes him to push his pain patients through his office in 15 minutes or less – in order to “break even.”

    I just have to wonder: How can the American Public and the Press continue to ignore the staggering costs of patient harm (which are simply passed along to ALL of us when we pay our increasing insurance premiums/deductibles)?

    References:

    https://www.propublica.org/article/surgeon-level-risk-quotes

    http://jnnp.bmj.com/content/70/4/433.full.pdf

    http://www.bloomberg.com/news/articles/2011-12-28/epidurals-linked-to-paralysis-seen-with-300-billion-pain-market

    http://bja.oxfordjournals.org/content/102/6/739.full

    http://knowyourdosemt.org/wp-content/uploads/2015/05/Treatment-Protocols-Prescription-Opioid-Abuse-in-Chronic-Pain.pdf

  6. Patti at 2:45 pm

    I’d like to share the following comment left in response to something I wrote recently on another site concerning the CDC data. The author’s job consists of doing research relating to public health substance use, and she sheds some important light on how the data is compiled.

    “Oh, the headline is deceptive clickbait. But if you read the entire thing – or go to the source data – you’ll see that what’s reported is the number of prescriptions per 100 population.

    No, you can’t just say that 143 scripts per 100 = 1.43 scripts per person. That’s an average. 143 scripts per 100 people does NOT mean every single person in a state literally has 1.43 pain scripts.

    Example: There are 10 members of my generation, counting my siblings and me, on my dad’s side. If I had access to the medical records, I would not be shocked to find that we “average” 1 or more pain script per person. Actually, 7 of us put together have zero pain scripts to my knowledge. The 2 with severe orthopedic disabilities and the 1 with terminal cancer would have all the pain scripts, whatever that number is.

    Furthermore, the CDC data count refills. The person left disabled by crush injuries from a wreck would contribute “12 prescriptions” to the database for 1 drug that is refilled monthly. It also counts each script the same, even if it’s a 10-count, no-renewals 5/500 Lortab following dental surgery.

    If you look at the CDC poster children for reductions in pain scripts, 2 of the 3 achieved the reductions by adopting Prescription Drug Monitoring Programs. PDMPs require providers to check a narcotic Rx database before writing or filling a prescription. This cuts down on doctor shopping in order to obtain multiple scripts for the same drug from different providers. The doctor shopper who has 5 scripts is 1 person with 5 scripts. Not 5 people with 1 script apiece.

    So. Before we go off on a mission to “educate” my terminal cousin’s doctors that he’d be better off spending his last days in excruciating misery … let’s be a little more honest about what our data actually are.”

  7. Kristi at 1:18 pm

    You are spot on when you say, “it’s us against them” because we are the population that are not being heard! All they worry about is how a chronic pain patient who takes Oxy will end up on heroin and in most cases that is a ridiculous statement coming from the DEA, FDA et al. They are lumping us into a group and that can’t happen or we will not be getting the correct medications to help our chronic pain.
    First, they need to stop the scare tactics to our Pain Management Dr.’s who are now scared to pass out opiates of any kind. And then that results in cortisone injections etc, which for patients like me who has a genetic disease, I can’t do the cortisone injections because it harms the connective tissue. Second, the DEA, FDA et al need to stop the stigma that we are all a bunch of “addicts” and refer someone to Psych instead because we must be crazy to have all this chronic pain (sarcasm).
    I have already emailed my governor and congressman multiple times about medicinal marijuana and my replies from the governor is basically “hell no”. So I am working with a grassroots group to put the ballot in the Legislature yet again. I think a nice combo of a narcotic and medicinal marijuana is what we truly need. And you don’t have to smoke it. You can bake with it etc.
    I see patients in my Facebook groups that their Dr.’s are sending them letters or phone calls saying they won’t see them any longer. In which they HAVE to give that patient another 30 day supply so that patient can find a new Dr. And if they don’t prescribe your last 30 days and you end up with withdrawals that could kill you, then that Dr. is held accountable!
    WE ARE NOT ADDICTS! We become dependent and that is totally different than an addict!

  8. Kurt W.G. Matthies at 2:21 am

    Thanks Terri and Ed.

    The CDC and Anti-Analgesia Cartel have provided a valuable tool for people in pain who are having trouble finding a doctor who will treat their chronic pain condition with opioids.

    I spend dozens of hours each month peer-counseling people in pain who are not being helped by their doctors, or who have been cutoff from paint treatment through no fault of their own. Hundreds of others also do this kind of work, for all kinds of diseases.

    You’d be amazed at how many people go to the internet for answers to health problems not being addressed by their doctors. Visit sites like Reddit.com and SpineUniverse.com and you’ll see what I mean.

    In any given month, I see hundreds of posts like:

    “My doctor said he was ‘no longer comfortable’ prescribing methadone. He’s been writing my presciptions for years and we’ve never had a problem. He says the DEA is ‘cracking down’ on methadone prescriptions, ut , but I’ve tried the other medications and methadone works the best for me. Does anyone know of a doctor in the Charlotte, NC, area who will prescribe methadone?”

    The https://data.cms.gov/Public-Use-Files/Medicare-Part-D-Opioid-Prescriber-Summary-File/yb2j-f3fp link, with practice, can provide the average pain patient with just this kind of information.

    Using the Part D Prescriber Lookup Tool, with proper constraints, filter sets, and export to a tool like Microsoft Access or another RDBMS will yield the data requested. It may be 3 year-old data, but with with some work, ingenuity, help from Yelp!, and a few phone calls, you may just be able to find a solution to your own pain problem.

    There’s 100 million stories in this Naked City. This has been one of them.

  9. Dave b at 6:54 pm

    CAN SOMEONE PLEASE QUESTION THE DEA. THEIR PERFORMANCE SUCKS. OUR TAX PAYER DLARS ARE BEING WASTED. THIS GROUP OF PEOPLE WERE TO STOP DRUGS FROM COMING OVER THE BOARDER. NOT TO JUGDE WHETHER OR NOT MARIJUANA HELP PAIN. DEFINITELY NOT COME OUT WITH COMPLETELY FALSE STATISTICS REGARDIMG PRESCRIPTION DRUG DEATHS. THAT IS THE JOB OF EACH STATES HEALTH SERVICES DEPARTMENT. THESE PEOPLE ARE THE MOST WORTHLESS INNDUVIDUALS IN OUR GOVERNMENT. I WOULD TRUST THEM TO SELL USED CARS. THEY ARE THE BIGGEST GROUP OF LIARS EVER AND YHEIR LEADER IS A COMPLETE MORON
    I ONLY HOPE HE GETS INJURED SO BAD THAT HE NEEDS PAIN MEDICINE THE REST OF HIS LIFE. THEN AND ONLY THEN WILL HE SHUT HIS STUPID MOUTH. I WOULD BET THIS GUY DRINKS EVERY NIGHT. MOST LIKELY AM ALCOHOLIC. ONLY A DRUNK COULD WOULD QUOTE FALSE NUMBERS THAT ARE ALSO OUTDATED AND IRRELEVANT. ONCE AGAIN FIRE THIS IDIOT. THE REST OF YOU DO YOUR JOB AND KEEP ALCOHOL AWAY FROM MINORS AND KEEP COCAINE AND HEROIN OUT OF OUR COUNTRY. LEAVE OUR CHRONICALLY SEVERE PAIN PATIENT ALONE! WE HAVE ELDERLY AND VETS ALONG WITH COMMON PEOPLE THAT NEED THIS MEDICATION TO FUNCTION.
    STOP BEING A BULLY ON THE PLAYGROUND

  10. Kim Miller at 6:34 pm

    At one time or another, I have been on an unbelievable amount of off label medication in an attempt to save me from the horrors of opioids and benzodiazepines. At one point, in an effort to get me to shut up about not sleeping, the PCP had taken me off Ambien, due to change in state laws, which worked, let me say again, Ambien worked. Instead, I was tried on one antidepressant after another with terrible side effects. Finally, the magic combination has been discovered. It consists of one benzodiazepine, 3 anti seizure meds, 3 muscle relaxers, and 3 additional muscle relaxers, that’s TEN PILLS EACH NIGHT AT ONCE to put me to sleep instead of ONE Ambien. I would like to mention that I am also prescribed a muscle relaxer during the day to use as a muscle relaxer.

    I gave tried Neurontin, Lyrica, Cymbalta, and many other “old school” antidepressants, like Trazadone, in an attempt to relieve pain. The reality of it is that NONE of this is done in an attempt to relieve pain or help with sleep, but the main objective is to AVOID WRITING CONTROLLED PRESCRIPTIONS.

    That’s the sad truth of the matter. We are given tons of meds that have little, if any hope of helping us with our very real problems, all of which carry a long list of adverse effects, when we could be treated with the simplest, least harmful meds, THAT ACTUALLY WORK! But, we are caught in the middle of a war on pain patients’ medications, and we aren’t even allowed to join in the fight!

    That’s right! We aren’t even present for our own war! We are the losers no matter what, though, because our best interests are NOT part of what’s being fought for. All that’s at stake is whether or not we get to suffer more than we already are, or do we just get classified a addicts, put in treatment facilities, and…oh yeah, we STILL have pain!!! Nobody was making up the pain after all just to get drugs!

    If there is no new way of alleviating pain, opioids are still the best option if other methods have not worked. Not 5 antidepressants, and 3 antiseizure drugs, just one opioid. The huge list of side effects for these off labels is much worse for us than the small list for opioids. If you are relegated to taking daily medication for relief if intractable pain, what difference does it make if you’re physically dependant? You must take something every day anyway.

  11. Terri Lewis PhD at 4:22 pm

    I too was curious about the compilation of the data. It is derived from the death certificate. The problem is, the data that is entered onto the death certificate varies widely and depends on the OPINION of the person who calls the death and enters the death. The coroner is often not a physician, and may be a local person of good will serving in an elected capacity. It is rarely based on autopsy and because systems vary widely from state to state, the quality and confirmability of the data varies widely. So, as they say in statistics circles, the source data is very likely ‘garbage in and garbage out.’ Even if we assume that the data is entered correctly there are many questions that remain when it comes to room for error – especially when it comes down to suicide, poisoning, and overdoses. Contextual data is often removed from analysis and may be missing or absent on the death certificate.

  12. Chris at 2:35 pm

    I take Gabapentin, Flexeril, w/ 3 other pain meds, at different strengths and 2 reformulated into time released (which greatly diminished the effects). I have been told I have a high tolerance to opiods. Having chronic pain for far to many years, then 15 yrs ago having a failed back fusion, was the straw that broke the camels back. (pardon the pun) Not long after becoming disabled. At first the meds did help. Then they were changed to time released, to confront the cases of misuse. Sadly

  13. LouisVA at 2:32 pm

    Ms. Lewis is spot on about the ‘us vs. them’ problem. We are talking past each other whether the issue is politics – conservative vs. liberal, Repub vs. Dems, and YES the terribly important issue of chronic pain. We each respond differently to different treatments and this needs to be known by everyone involved. I have responded well to high-dose opioid therapy after living for over 50 years in pain. The idea of reducing my dose to a one size fits all dose is ridiculous. My pain is well-controlled and has been for the last 5 years. If I reduced my dose to the amount proposed by the CDC, I would not just be in agony – it could kill me. Thanks for such a balanced article and I also extend my thanks to Ms. Lewis for her work.

  14. Mike at 2:28 pm

    What if someone is on opiates that have been working, and the doctor decides they don’t want to prescribe any more? What if the person is given an off label drug that isn’t relieving their pain, and they think, “maybe if I take another one…” What if their judgment is impaired by yet another drug? I’ve read several warnings where side effects can be worse when starting a drug. I don’t believe anyone who has been on long-term opiates is dying from opiate use!

  15. Nancy Ribok at 12:52 pm

    I have always wondered about the statistics everyone is using, such as prescription drug deaths, opioid deaths, heroin deaths….how are the compiled? is each patients charts reviewed? If a patient dies who happens to be on an opioid is that considered an opioid death? Or is it a cancer death who happened to be on oxycodone for pain? Is there a sampling of deaths looked at and is that number blown up expodentially? I don’t trust the data. I think it is distorted to show the worst case scenario. Some other independent group should look at this data. I believe I read the initial DEA data was from a very small sampling of legitimate data and then used to show trends with the minimal info. It is frightening being a chronic pain patient in this environment.
    Nancy

  16. Terri Lewis PhD at 12:51 pm

    Share this widely. Your comments are important. The life you save may be your own.

  17. Terri Lewis PhD at 12:44 pm

    It seems to me that this is on balance, “the rest of the story.” Please share your experiences so that I can work toward refining this. Every bit of crowdsourcing helps to add context and clarity.
    Thanks Ed for allowing your forum to be used in this manner.

  18. Tootie Welker at 11:22 am

    Two comments-First, you rarely see serotonin syndrome discussed when talking about using tramadol, especially with folks who are on antidepressants, which are commonly prescribed to those suffering from chronic pain. Besides tramadol being highly ineffective as a pain reducer for many chronic pain sufferers, it can cause serotonin syndrome, which can be deadly. I’m on antidepressants and years ago a doctor wrote a script for tramadol for my chronic back pain. It was the pharmacist who alerted me to the potential problems when mixing tramadol and antidepressants. I ended up in the ER, my muscles went spastic and I was hallucinating. The second issue is gabapentin and that class of drugs can worsen depression. Many chronic pain sufferers are depressed- the chronic pain steals their freedom and their life. And yet gabapentin is frequently prescribed to chronic pain sufferers. Last time they tried me on it my depression became very severe. Fortunately I was able to notice this effect and notify the doctor. I live alone and if I hadn’t been aware of my downward spiral, who knows what could of happened. I was not thoroughly educated on the possible effects, only the written material I received picking up my script. When you’re already depressed, it is not always obvious that it is worsening. In our rush to take away the one class of drugs -opioids – that can help those with chronic pain have improved quality of life and instead exchanging with drugs that have potential to worsen it, above and beyond the chronic pain, are we sentencing those with chronic pain to an early death due to over exaggerated fears of overdose? We are allowing fear and the DEA to decide the best treatment for those who suffer from chronic pain – and not allowing those of us who deal with chronic pain to be a part of the conversation. It’s time to take a wholistic approach to this problem, allow chronic pain sufferers a seat at the table and quit looking at the use of opioids for chronic pain in such a simplistic manner.

  19. Deb at 9:34 am

    Ed,
    i sent you a response to the letter i sent my congressman about chronic pain patients. it basically said……screw you, i’m worried about addiction. i’m wondering if Terri has a problem with us forwarding the power point presentation to others. i’m sure she didn’t hit all my local stations. sometimes a small local station will do something that is then picked up by the big ones. i don’t know how to get the message out and i’m tired of living in pain. my life sucks and all i think about is suicide. thank goodness i have a son it would crush. wonder if it’s the high doses of gabapentin or is it really living in pain and not having any kind of a life. i’ve been dealing with this since 1998. the first 5 years weren’t too bad until they started making me go to pain clinics and then they insisted i couldn’t manage my meds so they put me on round the clock doseing. i feel doctors have done more to harm me than help me when it comes to my pain. i look forward to Terri’s response.

  20. Heather at 9:10 am

    Thank you! I just went through a hellish few months of gabapentin + tramadol (including extreme depression, loss of balance, severely compromised concentration), because my doc wanted to stop prescribing opiods for my chronic pain. Every attempt to discuss my side effects resulted in a higher dosage of gabapentin. Pointing out the off-label use and lack of relief mean that I am now treated as a drug-seeking, problem patient by my GP.

    I am enormously grateful to the few who are fighting for we sufferers of unending pain. Thank you, Dr. Lewis!

  21. Scott michaels at 8:47 am

    Real information, what a novel concept.
    Please forward to 60 minutes, cnn cdc and harvard director pain studies health director of services.