The States of Pain Regulation

The States of Pain Regulation

By Terri Lewis, PhD.

Marlene and David – The Backstory

Marlene is a single 42 year old woman who resides in public housing in southern Indiana.  She has a history of substance abuse but has been free of its’ effects for four years. She also has a blood clotting disorder that caused a major abdominal bleed, requiring her to present to her local emergency room for pain related symptoms.  Her history of substance abuse resulted in ER personnel turning her away from the department after she was labeled as drug seeking. Moreover, the abdominal bleed resulted in blood clots that formed in her legs, with amputation of both lower limbs the result. After Marlene’s amputations, she was discharged to her home with a 7 day prescription for opiates which her insurer, Humana, refused to authorize because opiates are no longer covered on her dual Medicare, Medicaid policy.  The recommended substitutions were contraindicated for her rare blood clotting disorder. Marlene was able to borrow $400.00 from her family members to obtain 7 days of minimum relief.  Her next appointment is on September 26 where she will be evaluated for possible changes to the medication that controls her blood clotting factors.

David, 38, is a young father of four, a five year survivor of the fungal meningitis outbreak.  He still suffers from the effects of his exposure to contaminated epidural injections with headaches, vision disturbances, tinnitus, adhesive arachnoiditis and fibromyalgia.  The state that he lives in, West Virginia, has battled opiate addiction aggressively causing most physicians to drop patients who require complex coordinated health supports.  His neurosurgeon recommended and installed a pain pump which resulted in 3 unsuccessful surgeries for pump repositioning and a blood patch.  The CSF leak remains. The daily morphine equivalent dose has been reduced to 40 MME, insufficient to reduce his pain levels.  David is denied oral medications for breakthrough pain support. He spends 20 of 24 hours per day in a reclining position in a dark room. Parenting is difficult. Suicidal ideation is real.  We have managed to get a follow up appointment for him at Cleveland Clinic, a travel distance of 8 hours from his home on the WVA/OH border. Because he lacks a primary care physician to coordinate his care, he must rely on this university hospital system 350 miles away. 

September is Pain Awareness Month

As we advance into the month of September, I am taking a closer look at the systems issues that surround current pain policy across the United States.  While laws and regulations are rapidly being adopted, the health care systems they are supposed to regulate are reducing, reorganizing, and even closing.  We now have the opportunity to speak about the influence of reduced care access and lack of primary care at the level of the local community.  What is the influence of a lack of care coordination on the total management of your pain management program?  Let’s look at both Marlene and David.

Marlene and David were both abandoned by their primary care providers as ‘too complex’ once the opioid prescribing laws changed in their respective states. David was abandoned by his pain management physician once the legal proceedings against clinics was terminated. This injects a very important problem into the issue of what happens when you lose care coordination access.  In both cases, it forces these individuals to present to the emergency room for identification and diagnosis.  The emergency room is forced to make a quick assessment with few records or history.  As often as note, the records they generate may be wrong because there is no consistent testing of the information provided by patients under duress.

Terri Lewis, PhD

Communication between health care entities has real potential to fail, further magnifying the problem of identification and diagnosis.  Many chronic pain patients who present to the ER are in a pain crisis which may be an exacerbation of existing problems or related to a wholly new problem that is not understood.  Within the last year, we have seen recommendations that pain be dropped as a fifth vital sign. If pain is to be ignored does that mean investigation ceases in the ER?  Is treating pain indicative of disease or an attempt to please the patient?  Some systems have gone so far as to give instructions to ignore complaints of pain as not essential to the treatment process.

Unfortunately, in this environment, presentation to the ER places them at an immediate disadvantage because care staff cannot immediately discern the real crisis of care from the person who presents to score some pills to support addiction.  Presenting to the ER these days, and announcing that pain is your presenting issue, can cause an immediate derailment of the conversation unless personnel know you and your history.  If you are lucky, your hospital may have a subclinical unit for the underinsured or unrepresented patient who lacks a PCP. In many cases, this subclinical unit is not available.

The ER – Not the best place for Identification and Diagnosis. 

Marlene was flagged immediately for her history of substance abuse even though it was not a current problem.  Because she presented from the local mental health center it was assumed that her presenting pain levels were of less import than the fact that she had just been screened for suicidal ideation and substance use, both of which were negative.  This resulted in labeling her pain a possible attempt to score some pills to act out a suicide.  It delayed and derailed the detection process even though she told them she had a known clotting factor problem and even though she had this in her hospital records from the first amputation.  Hospital personnel gave her an injection of Haldol which quieted her complaints of pain and put her to sleep even as the ticking time bomb in her abdomen accumulated momentum.

David on the other hand, lacking a primary care physician, presents with severe headache, photophobia, and elevated unmanageable pain levels which are beyond his control.  He is vomiting from pain, he has a low-grade fever, and his blood pressure is high.  He reports his pharmacological history of high dose opiates, Adderall for adult ADHD, and makes personnel aware of his recent pump installation.  He is told immediately that he will receive neither a prescription for opiates nor Adderall even though he has requested neither.  His symptoms – headache, photophobia are assumed to be related to his elevated blood pressure.  His history of fungal meningitis is ignored. They give him a shot of dilaudid, a urine tox screen and as his blood pressure reduces he is sent home and told to call his primary care physician (or neurosurgeon) to follow up.

The Treatment Plan

Theoretically the treatment plan is based on a though evaluation of body systems, social and functional history and some attempt to determine impact of the complaints on activities of daily living.  In the PCP’s clinic we would look for this. In both Marlene’s and David’s case, this was cursory, enough to provide emergency care.  Having no PCP to hand off to, both ERs act as a ‘dead letter box’ for collected and valuable information.  Both consumers are left to coordinate their follow-up care with no more than a piece of paper and follow-up instructions. There is no communication or clinical process to reach out to the community to set appoints, transfer records, or assist these two individuals with the next steps.

Upon her discharge Marlene needs an immediate referral to a hematologist as her hematoma has been labeled as a ‘bruise’ of unknown origin. David needs an assessment of the

CSF leak and someone to look at his infectious markers post installation of his pain pump (see below).

At the urging of a family member, Marlene finds her way to a hematologist three days after her ER discharge.  Upon hearing her recent history works her right in. He orders the information from the hospital and immediately admits her to intensive care based on the CT that has been improperly reviewed at the ER. Her bruise is in fact a large fluid loss into her abdomen.  She is sedated, assessed, and a determination is made that her remaining leg must be removed.  Had the hematoma been detected 3 days earlier, her leg could have been retained.

David’s neuro chooses to deal with nothing but the pain pump installation and expresses hope that the CSF leak will close on its own.  Because it has failed to perform properly over 3 surgeries, David places his faith in the university medical center 350 miles distant and hopes for a comprehensive evaluation of his infectious disease status, his pain levels, a course of action for the CSF leak.

In neither case has the whole person been assessed. This has resulted in unnecessary harm, suffering, increased disability, and cost.  In both of these cases, 3 critical steps identified by the Federation of State Medical Boards and their own state laws failed at the ER – the evaluation, the treatment plan, and the follow-up:

Evaluation of the Patient.  A medical history and physical examination must be obtained, evaluated, and documented in the medical record. The medical record should document the nature and intensity of the pain, current and past treatments for pain, underlying or coexisting diseases or conditions, the effect of the pain on physical and psychological function, and history of substance abuse. The medical record also should document the presence of one or more recognized medical indications for the use of a controlled substance. Marlene was quieted from her complaints of pain by injection of Haldol, even as her attending personnel misread the CT scan.  Her pain was labeled as an attempt to score drugs for a potential suicide. David’s pain was largely ignored in favor of reducing his blood pressure. Nobody addressed the CSF leak or the lab findings generated by the visit.

Treatment Plan.  The written treatment plan should state objectives that will be used to determine treatment success, such as pain relief and improved physical and psychosocial function, and should indicate if any further diagnostic evaluations or other treatments are planned. After treatment begins, the physician should adjust drug therapy to the individual medical needs of each patient. Other treatment modalities or a rehabilitation program may be necessary depending on the etiology of the pain and the extent to which the pain is associated with physical and psychosocial impairment.  In neither case was a treatment plan issued.

Informed Consent and Agreement for Treatment.  The physician should discuss the risks and benefits of the use of controlled substances with the patient, persons designated by the patient or with the patient’s surrogate or guardian if the patient is without medical decision-making capacity. The patient should receive prescriptions from one physician and one pharmacy whenever possible. If the patient is at high risk for medication abuse or has a history of substance abuse, the physician should consider the use of a written agreement between physician and patient outlining patient responsibilities, including o urine/serum medication levels screening when requested; number and frequency of all prescription refills; and reasons for which drug therapy may be discontinued (e.g., violation of agreement).

In neither of these cases was enough information collected to construct a treatment plan. In neither case was a proper handoff constructed back to the community.  In both cases these individuals left their ER no better than they entered, and in fact perhaps worse. In both cases, their complaints of acute pain were dismissed leading to errors.  In both cases these errors had major consequences that will become the topic of our next conversation.  What happens when you don’t have care coordination? As we will learn, they will continue to have very different experiences.

Tips for ER providers

This Federation of State Boards Model Policy for the Use of Controlled Substances for the Treatment of Pain is located at this link-

Model Policy for the Use of Controlled Substances for the Treatment of Pain

A number of entities track laws associated with drug control policy and use of controlled substances for pain management legislation at the state level-

Database of Statutes, Regulations, & Other Policies for Pain Management

National Alliance for Model State Drug Laws

Academy of Integrative Pain Management

Source. National Drug Control Budget: FY 2018 Funding Highlights. Washington, DC: Executive Office of the President, Office of National Drug Control Policy

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Terri A Lewis, PhD.

newest oldest
Notify of
Kathi moriel

Wow wow wow we are in major deep [edit]. Please some one contact me that is willing to dive into this issue with me and find someone somewhere that will listen to us and help. I already failed at a suicide attempt and I’m not going to leave this world without being heard and knowing I did all I could to save my life and EXPOSE THE SONS OF [edit] THAT DID THIS TO US AND MAKE OUR GOVERNMENT OR JUSTICE SYSTEM CRIMINALIZE DRS ,DRUG MAKERS FOR WHAT THEY HAVE DONE.CHECK OUT UTUBES LATEST VIDEO ON ADHESIVE ARACHNOIDITIS THE MAN FROM AUSTRALIA TELL THE WHOLE STORY


All these comments are heartbreaking and it has come up to a year since the CDC took over our lives with the insane opiate restrictions. Keep sending your Local and state Representatives your stories and ask them what they can do for you. No one has answered me, so no vote for them, but keep spreading the word, we are the only ones that have been treated unfairly by this. The heroin addicts are having their butts powdered and diapered right now, if you ask me.

kathi moriel

The second anniversary of father’s death from suicide is less then 3 weeks away. I personally have fought off suicide fir the last 8 months.Both of us sufferers of Adhesive arachnoiditis. How sad and completely hopeless we are left to feel that things are getting worse and have not one positive little glimmer of hope that someone ,somewhere ,may give a F. K . Before we see and suffer from not only pain the loss if more loved ones who cannot and should not have to suffer from horrific pain. Many of us victims of an incurable disease the very PHYSICAN now not willing to treat us CAUSED. When will someone famous enough or powerful enough speak out against the AMA AND MAKE THEM ANSWER TO THIS TRAVISTIE.?? ? HOW MANY SUICIDES are going to get labeled as opiate overdose instead of assisted suicide do do inadequate medical aftercare do to disease caused from epidural steroid injection or mylegram dye leak. When is a pharmacudical company going to be at the brink of bankruptcy and stand up to the DEA and educate them on how to determine people with REAL PAIN BY A SIMPLE HORMONE TEST THAT CAN DETERMINE THE TRUE LEVEL OF PAIN ONE HAS.? This is not rocket science people.Dr Forrest Tennant can simply explain the blood test that can be done and how and what it can show to assist drs in assessment of pain levels. We can only hope if there is no hope for us to be able to get the medication we need that every state in the USA WILL ADOPT THE ASSISTED SUICIDE LAW SO WE MAY DIE WITH DIGINITY .


Unfortunately this is all so true!!! I refuse to go back to the ER in North Fl, Orange Park area to be specific. It is horrific. I’ve been for exacerbation of my chronic diseases, one for which I woke up and couldn’t walk at all. My husband had to carry me to the bathroom and finally took me to the hospital as it never went away as the day went on. As soon as we got there they ask me my meds and said first off now, “we are not here to give you drugs”. I didn’t ask for them I said crying in almost a hyperventilating way because I was scared and didn’t know what was wrong. I am a nurse as well and was disgusted. I said I have AS, Severe Fibro, osteoarthritis, mutiple bulging disc in my lumbar and cervical spine with cord abudded, neuropathy, and the lost goes on and on. They said well you see pain management and there is nothing we can do for you here. I sais my told told me to come here and they said well we can’t do anything unless we admit you. I said well admit me. I can’t walk or move my legs. Something is wrong. They went out and came back with discharge papers to follow up with pcp in am. No bloodwork or any other test done. They would not even let my husband use a wheelchair to get me back to the car. He had to carry me back out which hurt so bad. I was hysterical. I reported the Dr and the hospital and called my Dr and he called me back about 10.min later and said he called and reeled out the ER Dr and wanted me to go back they would treat me. I told him sorry I would not go back and be treated like a pics of crap, abusive, barbaric, and in a neglectful way. I would never ever treat a patient like that. So my husband took me home and went and bought me a walker with a seat but for almost 4 solid days I could not walk. He had to carry me to the bathroom and I was bedbohnd other than that. These are the Dr’s and hospitals that need to be reported just because we take meds doesn’t mean we are addicts. I’ve also gone in for pneumonia before also as I was being treated by pcp but getting worse and spiked a temp during the weekend and gotbreallt weak and he said go for fluids etc. They did so chest xray that time and said I did have infiltrated but sort me home no fluids or bloodwork and to continue current treatment. People are literally dying in parking lots here in Florida as we know our bodies better than they do. We are a challenge to them but we do get sick also. So everyone please continue to be your own ADVOCATES and speak up… Read more »

Doctors are now ” short arms of the law ” .

No matter their level of caring or expertise they all fear for their jobs. Sure the rules say Dr’s get the final say, but most all of them work for ” the company “.

I don’t excuse them because they took an oath just like I did when the US Army made me their property. The oath I took was gospel & there were no exceptions,

My new PM Dr has seen me for 8 visits now. My condition has clearly deteriorated – BP went from 120/68 to 161/110 after my last taper and not a word of concern. Not once had the Dr done a physical exam or asked about my numerous falls. Last week my NSAIDS were changed ( history of ulcer ) and after one day I was ready for the ER but instead quit taking the NSAIDS,

My 40 minute visit is spent answering the same questions – Pill count and a repeat of the questions by the PA.

It’s all about the paperwork & documentation to support the opiates I do get. I asked to see my file for that last visit and it was at least 5 pages long and that didn’t include the States medication report – added to my file every month. It’s clear to me that my PM Dr wants mainly – Pain Pump refills and Injections for all her patients, My presence is mainly a problem for her because all of my test results for the last 20 years show a plethora of Spinal abnormalities and all of them cause severe pain and debilitating weakness. I’m looking for another Dr before this one ruins me.


John S


I live in California and this is just another state where chronic extreme or otherwise pain is not treated properly because our doctors are so afraid of losing their license. Good Ole government has its nose where it doesn’t belong. When a senator or congressman receives a specific MD in pain management then and only then should that person be allowed to have a say in pain management policy. I wish that every government official had RSD/CRPS. I guarantee they would get their pain taken seriously and they would most definitely get whatever pain medication they needed! I have moved to another state, decreased my pain medication and found my pain level so high that suicide seems to be a viable option. I have had RSD for over 20 years. I am worn out………….


All of us suffering, no matter what your States regulations are, should not have to live in pain or worry about what you should or shouldn’t say to your doctor. If your body is reacting to pain with high blood pressure, heart rate and such, your doctor has to deal with it and try to offer a you a better quality of life. What’s happening now is going against what they are educated in and has taken away from the many years of medical training they have dedicated in their life. Not only are we suffering, they are too. My family doctor had to stop treating me after 14 years keeping me safe from the danger of pain. He was extremely upset, he sent me back to my PM doctor but wants to be able to write a script without being stripped of his license. What can we do? Keep writing and calling anyone of your States Representatives and spread the word how unfair this is to all of us involved. Share your story…


My daughter wants to not live every morning as she tries to face another day. Lyme and related co’s that went undiagnosed for years has caused her to be in severe pain, an 8 on the charts at a minimum with the small amount of pain meds, much smaller than handed out to those that chose to do heroin and are being petted on the head and give methadone no questions asked. She hits the 9 and has had plenty blackouts from pain, one in the main pavilion lobby of Cleveland Clinic. Did they find the Lyme, heck no. As she slumped out of the wheelchair onto the floor, I yelled for help. They took her to a side room, 50 people standing around. Asked me what’s wrong? I said I am here to find out. Each time they woke her she began screaming then her limbs all locked up tight hard, unmoveable. These attacks gone on for years. Have to rush her to ER. They give her two shots dilauded, send her home. All the gory details of suffering along with this left out. Lyme, which gov does nothing for, nor allows treatment to be paid by insurance companies. She has EDS. Most EDS patients do not absorb meds correctly as others do. Genetics play a part with pain meds absorption, DUH. The EDS was never an issue, pain throughout her life that could be accepted. It is the Lyme that did her in. For those with godawful pain like my daughter who cries, moans, has a bite towel for pain to try not upset me more, for her suffering, and have diagnoses legit, they are being ignored. My child worked hard. Got a bachelor in architecture. Lost her job, her life at 23, now 32. Our lives revolve around her pain. Yes. Whatever no one cares. Doctors care? Such few no one can find them. When I am dead, she will have no choice to end hers. This has been said. We cry as she wants nothing else than to take a shower daily, fix her own food, be able to take care herself and not suffer as she does! Is it too much to ask?? So when everyone cries over the heroin addicts who learned to blame their CHOICE to take that because supposedly they had pain pills, got addicted, got too many, or people die from docs who have over prescribed without knowing for sure a patient had an issue they need them, we say LAME EXCUSE on those making choices to send people who need help into suicidal reality. Screw those who made the choice to take their first heroin. They chose that. Screw those who make a living pushing heroin. Screw those that took heroin and say they have a disease. So do alcoholics have a disease then, on and on. Sorry for parents who lost their kids to heroin. Should have tried harder directing their life into channels away from people who push… Read more »

Michael G Langley, MD

Sadly, the patients have lost the doctors that actually care enough about them to actually do the work needed to properly care for them.

Mark Ibsen MD

Thanks Dr Lewis for this thorough and
Poignant article.

We physicians need to stop,
Be with the patient
Stop judging them.

This requires
Heart to heart connection.

We can do this.
Better yet:
We can BE this.


I am not surprised to read these stories at all. I appreciate all of your points, but I still do not understand how such highly educated people such as doctors are allowing the government to impact how they practice medicine. This is the exact time that a medical professional should be standing up to protect some of he most vulnerable patients out there. I put my license on the line many times when I disagreed with a patients treatment plan. This is the way medical care should work. If you can justify a treatment plan then it should be able to go forward with monitoring and evaluation. You see, I was a registered nurse for 26 years and the treatment of chronic pain patients has never really improved and in fact is worse. Now I have the added insite of being a chronic pain patient myself. You might think that being a nurse I would have a little better access to proper pain management treatment, when it’s the contrary. I have encountered some of the worst medical care out there and the best care can exist but I have no access to it because of decisions made by my government in Canada and my primary physician. I believe that the medical system is partially if not totally to blame for the constant unrelenting pain I have today and have been trying to coexist with since an MVA in 2008. I have tried pretty well everything out there to help myself cope with all of this pain. I also have spent $100,000 of my own money for medication and alternative treatments. My current soon to be ex primary physician does not allow me to speak frankly of my pain and as a result she really can’t understand what I’m living like or as I call it existing because it is not living when pain dictates everything in your life. She is more interested in treating my issues (hypertension, tachycardia) that have developed partially if not totally because of undertreated pain, like my untreated hypertension that is now symptoms or my asthma which also impacts my pain levels (sob/cp/weakness/dizziness/nausea/diaphorsis yes I know that sounds like angina doesn’t it) but now isn’t because nothing was caught in an ecg or 24 hour telemetry and chronic pain. Being a CCU nurse I know that all things are not caught in a cursuary exam or limited telemetry. Now she believes it’s too labile to treat and is caused by my pain. Treatment plan 1) stop self monitor of bp at home as will only increase my stress and bp 2) further decrease of daytime pain meds to 1 codiene and 1 nucynta 3)my asthma has flared this summer from smoke from forest fires and is negatively impacting my pain as in increasing it. I know if I express my real concerns that I am going to have a stroke or MI I will only get another label of catastrophizing on my chart. I am certainly… Read more »



This unfathonable, these poor ppl, isn’t this grounds for a lawsuit? I think my situation is bad as mine was cut back drastically below the 90MME even though in the office I was told that I wld receive 30mg of OxyContin 3 times daily with 10 mg of oxymorphone ir 2x daily, when I picked them up @ the pharmacy it was 20 mg of OxyContin 2x daily. I called pain managemant & nrsg asst. said that is what the dr ordered, I said u were in the room as u rx’s mscontin last month in which I am allergic to & u said it wasn’t on my chart. The dr showed you where it was & said I hav an allergy to morphine causing anaphylaxis & u said nothing. The nrsg asst said when I called about the descrepancy in dose of OxyContin ” that she did not recall as so many numbers where thrown around.” That’s right cover yur ass. The next visit I am recording this secretly. I am so upset about all these ppl that NEED pain managemant. I know some1 that sees a FMD & on her first visit she received high doses of pain meds that she was on previously on after she was discharged from previous PM, yes she did a drug test but no results were given that day. I want to switch to this FMD but am Leary bc I live in PA & the governor signed a bill stating that FMD cannot write 4 pain meds. In essence u know the devil u hav u don’t know the 1 yur getting. Luckily I was admitted to the hospital last month with several blood clots also so never took the morphine bc I was given my previous meds oxymorphone 40mg as that is what they had on record in the hospita , but I took the morphine into PM as showed them every pill as to not be accused of diversion. I live month to month like every1 else, hav been going through daily withdrawals as I was on oxymorphone 40mg 3X daily which is supposed 3 x stronger than most of them. The dr asked me if I wanted fentenyl, it clearly says on my chart that I am allergic to it. Also the PM where I hv been going 4 7 years has a sign up “we don’t rx fentenyl patches”. So I don’t even know what he was talking about. I don’t know if fentenyl comes in pill form as I am only aware of it being I’ve or patches. I think they may inadvertently kill me there. I really wld luv to see a family dr that will take care of all of me but the new law of him not being able to write for pain meds makes me hesitant, however my friend still gets her high doses & he hasn’t said a word about this, good luck to all of you & pray things change.… Read more »


We are in big trouble if GaGa is our ‘silver bullet.’


Well, I just read much of the policy for NC. I thought I was a fairly “engaged” person in this opiod, pain, doctor, distorted numbers thing.

Boy was I wrong. After reading what I did from the link you provided about my state, I’m left shaking my head.

I had no idea that my state developed it’s regulations based on ONE unnamed random study and the CDC.

I am stunned at how deeply these Boards and the State and Federal government are in our lives, right down to the people we associate with and relatives they demand be documented.

The hell with HIPPA in my state. They want ALL the information about us, demanded via our doctors!

You can’t turn your head the right way without this Board ordering our doctors to document it and factor IT IN to our Pain Management.

And the real kicker is, if YOUR medication is working well enough for you, if you SAY ANYTHING ABOUT IT to your doctor they are required to TAKE YOU OFF OF It, and get This- because it’s not working!

What in the Sam hell is going on here, what on earth.

They tell our doctors to “look out ” for the patient that compliments them, that’s a DIVERSION TACTIC. When on earth did we become this way as a society? That we treat humans this way our governments are swayed along with the people to, well, just forget that human beings different from the way YOU think are real people just the same.

In my state, if you’re a person who suffers debilitating pain, God help us. I just read all that and learned how to be a good little soldier and follow the strict rules, keep my mouth closed, and be home in my painful body and life and pray they don’t take away my little opiod pain “lessen” pills until I can move out of this body into, I pray, heaven. Because I hurt so bad that I’m more terrified than ever that they’ll take my medicine away.