Our Neglect of Chronic Pain Has Left Many Without an Identity

Our Neglect of Chronic Pain Has Left Many Without an Identity

By Scott McKinney Ph.D.

Imagine if, as a society, we had the inability to be good parents. The resulting context would be one where a greater need existed for individuals and groups that provided a solution to the problem. One could imagine that the childcare industry would grow proportionate to the need for quality care, schools would likely adapt to meet demands, and society would debate about what we need to do to be better parents. The problem is that none of this replaces the power of good parenting and the solution was never really directed at the problem. That may sound absurd, but something very similar-a product of regulation-is fueling the opioid epidemic. That something is neglect.

Scott McKinney

The opioid epidemic is in the news on just about every television and radio show. The U.S. Department of Health and Human Services declared a public health crisis in 2017. It is such a significant topic that our President has probably tweeted about it. The administration’s new policy emphasizes being tough on crime with vague promises for harm-reduction and treatment. Our regulators debate, campaign, and vote on issues around controlling borders and over-regulating Physicians, yet no one is talking about the typical mom, dad, husband, or wife that deals with chronic pain issues. As the regulatory broom sweeps our nation, normal and functioning, people are being brushed away by a straying bristle. The, now common story, of a person dealing with chronic pain goes something like this.

They have an unfortunate accident or diagnosis. They seek medical care for the pain and the path typically leads to opioid prescriptions. Years go by, everything is managed. Of course, their tolerance to the medication being prescribed has increased, and so too, their dose. One day, they go to what seems a typical follow-up appointment with their provider. The provider, with increasingly higher “regulatory-induced-anxiety”, informs the person that they will no longer be able to write their prescription and need to refer them to another provider. This seems simple enough in the individual’s mind. Unfortunately, they soon learn that this was more than an anomaly; it is a growing trend. After countless calls and Google searches they find other physicians unwilling to take over their care or indicted by the Federal Government. There problem just became critical. The clock has now started for a person who will run out of the medication that enabled them to function normally. Their managed pain will start to ravage the ability to function and the overall quality of their life. And, of course, let us not forget the withdrawal they will soon endure. Unknown to them at the time, they have joined the unnamed.

Patients are being put in this exact scenario each day around us. They are forced to look for non-opioid solutions to their chronic pain issues, which may not provide the same level of functioning they once had or seek the only treatment available for those dependent on mood-altering chemicals. They are told they either don’t need opioids or they need addiction treatment.

This is becoming a regular story in the substance abuse treatment sector. Patients dependent on opioids, without providers willing to address their needs, seek solace in a sector that will provide them care. The problem with this is that addiction treatment centers are ill-equipped to care for these patients. Many do not meet the diagnostic criteria for substance abuse and have a primary diagnosis of chronic pain. Between dealing with chronic pain and being able to properly diagnosis the problem, many providers are having to create “pain-management for addiction” programs specific to this population or are only treating the resulting dependence from a more significant problem. Like the bad parenting problem, we are not addressing the problem’s source.

If we want to begin correcting this problem we first need to recognize the population discussed. Yes, we need to hold physicians accountable when prescribing opioids for pain. But, there is also a lack of differentiation between substance abuse disorder and substance dependence. So, who are we talking about in the first place? The updated Diagnostic and Statistical Manual of Mental Disorders (DSM-V)’s additional criteria of substance use disorder results in a series of diagnostic codes that neglects compliant, chemically dependent chronic pain patients; they have no diagnostic identifier unless they are classified as substance abusers.

How can we begin to help a population that doesn’t even have a name? This is problematic in two ways. One it leaves pain and addiction professionals without the proper diagnostic label for this population. Secondly, medications and services without proper diagnoses are not covered by health insurers. So, they are either misdiagnosed or are simply thrown aside in some direction. An amendment to the DSM-V needs to be made to accommodate the criteria needed to justify chemical dependency or an additional set of ICD-10 codes for those chemically dependent that do not meet substance abuse criteria. As we continue to have discussion around the opioid problem the patients dependent but not abusing opioid prescriptions are as much of a priority as those abusing medications or using illicit substances. They are all our neighbors, friends, and family.

Dr. Scott McKinney is the president of the Midwest Institute for Addiction. He has served in the United States Marine Corps as a Recon Marine and combat veteran. His passions have taken him from the world of Physical therapy and human performance to those with substance use and dependence. He continues to find opportunities to work for the betterment of others.

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: Scott McKinney Ph.D.

newest oldest
Notify of

There are other horrible things happening for the chronic pain patient too. How about insurance companies who are no longer paying for the opioid medication that you’ve been on for 20 years, and you are told that you will have to try a different pain medication?? Of course..you only become aware of this when you are standing at the prescription counter trying to get your pain medication filled. Also..it happens to be late Friday afternoon..your doctor’s office is already closed until Monday, and you are out of your pain medication. The pharmacist reminds you that you can pay the full price of $465 for your medication. Who can afford that?? I certainly can’t. And, when you later ask your insurance provider why your medication is no longer covered by your insurance..you are told..”Oh, it is due to the opioid epidemic”. What?? How about you have always paid $20 to $30 for your insurance co-payment..but this time when you’re at the pharmacy..your pharmacist tells you that your new insurance co-payment has gone up to $150..and this is for the generic medication. So, you ask your pharmacist how much the brand name medication is..thinking that the price must be much higher..compared to your generic medication that is now $150..but the pharmacist tells you that the brand & generic are now the same co-pay of $150. What?? Again, you go home without your medication, because you cannot afford a monthly co-payment of $150. And again, you contact your insurance company to ask them why your co-payment has gone up from $30 to $150 per month, and also why your generic medication and the brand name medication have the exact same co-payment of $150?? And, your insurance provider tells you..”Oh..it is due to the opioid epidemic. With a high co-pay on both, it will weed out the drug addicts” Well, it weeded out a chronic pain patient too..ME. This is not right. Pain patients suffer physically, mentally & financially because of drug addicts? What?? When will this end?

Dash Riprock

I don’t know how much longer I can tolerate this pain. It’s draining my life force, it cuts through me like a knife. I’m losing hope, what little I have left that is. If I get cut back or cut off I’ll die.I lay here in bed day after day, I rarely feel up to doing the things that are necessary to survive.I really sucks! It’s my back, I’ve had surgery, I’m still in pain.

Dennis M lawson

i’m an long term chronic pain patient,i have every dics in my neck fused,i’m under medicated for this because of this opioid crisis’s lie,the report for this was made on lie’s,half-lies and b.s. why i ‘ve been told to make them smoke pot,money all-ways follow that,it don’t work for me,my pain too great,can’t even live as a disabled person any more,if there going to lower or stop the only medicine that works for us,(that why they call them pain killer’s)then they should give us a loaded gun for when we are in pain so great that no human should be in(if they do this to a dog or cat they be arrested)we can stop it for good,because we just can’t live like this someone going to answer to the man up stairs for this,there too many real chronic pain patients who have come to this point,and i have too tell you their right,how can a person kill themself well if you woke up one day and had pain so great,and the only medicine that would help is opioids and you found out no one would help you (call you a drug addict) and it went on for years you too would say his right i too want to stop this pain even if it means killing myself.

Sandy Auriene Sullivan

My brother has end stage cancer and is being denied safe 24hr coverage of his pain. 2x Norco a day does nothing for him!

This is where we are today. No one wants to risk prescibing to ANYONE regardless of the guidelines.

The fear doctors face today is greater than their willingness to help.

My brother is in MS but often needs to go to New Orleans for specialists. Guess which state just received billions to combat abuse? Louisiana. #1 prison capital of THE WORLD!

We don’t need to be on the DMV. I’ve taken it. Im not at risk for substance abuse. Right there in black and white….back when my injury happened in 2000, by 2001 was forced to prove it wasn’t in my head.
Today? Im dying. Wasting away in part to my pain no longer properly managed.

Still in pain management. Went legal medical mj. Which does help and Florida prices on concentrates isn’t bad. 60$ for up to 4wks of some relief. Regular mj isn’t that effective either.

My brother is left to make his own to save his life and escape his terminal pain.


Just want to say that article blew my mind i couldnt of said it better! I live in canada but am having thesame issues here ny dr died and another one left his practice with 3 months notice and then i waited 17 months to see a new pain dr for him to tell me i need to eat more fish and beans i said have u lost your mind i asking for help with a minor narcotic and have been suffering since last year and he says change my diet and do aqua fitness i said i cant do that without medication he said too bad! What a mess this all became and really the big pharmaceutical companies are to blame foe pushing them to start with! Some peopme need help and we r being denied ! Funny here in canada i can ask for an assisted suicide legally they have to help me die! But wont help me live! Best way to say it!

I’m living without opioid treatment tha same as Danny below states. DEA charged my dr in March of 2016 his fear of more charges refuses to tell me anything and area DEA( Phila.Pa. ) refuse to admit knowing the dr who cared for me PROPERLY FOR 15 yrs. I’ve only been offered injections since I can’t get my medical records.Where is the help for older patients who painful health conditions has gotten worst??? There’s no help to just get a copy of our medical records. So we aren’t forced to re try failed painful alternatives over and over ???


The damage has been done to the cp community. When there are narcissistic individuals aka Andrew Andrew Kolodny for one, who have an agenda to take down a certain population of people by denying them LIFESAVING PAIN MEDICATION, leaving us to exist in a TORTUROUS HELL until we put a gun to our heads to end the pain, that is torture/ GENOCIDE!! I have been an intractable pain pt since 2001. Was put thru every alternative therapy MY BODY, NOONE ELSES BUT MINE, could take and left me thousands in debt. I am a rapid metabolizer and require higher doses of pain medication in order to sustain a quality of life. That does NOT make me an addict!!! I was on the SAME STABLE DOSE FOR EIGHT YEARS WITH SUCCESS until the INHUMANE CDC guidelines came out. My dr dropped me like garbage, told me his license was more important than treating pain pts. Gave me my last script that he cut way back, no weaning off , and sent me on my way not caring if I lived or died. It has been a torturous hell trying to find a dr willing to script the LIFESAVING pain medication I require. PURE HELL! I have been degraded, stigmatized as a drug addict, told to go to detox, ive been turned away at the ER when the overbearing pain and withdrawal was to much and I was told they dont treat addicts to go to rehab!!! I have nearly TWENTY YEARS OF MEDICAL RECORDS DOCUMENTING MY DEBILITATING INCURABLE DISEASES AND THE MANY TREATMENTS I HAVE ENDURED. I HAVE FOLLOWED ALL THE RULES, HAVE GONE THRU MONTHLY DRUG TESTING LIKE SOME DAM CRIMINAL AND SURPRISE PILL COUNTS. ITS A DISGRACE! WE ARE SICK WE DID NOT BREAK ANY LAWS ONLY THING WE DID WAS FOLLOW DRS ORDERS AND AFTER UNDERGOING THEIR SURGERIES AND LEFT WORSE OFF THEN THEY WANT NOTHING TO DO WITH US. THIS WAR ON INNOCENT LAW ABIDING CHRONICALLY ILL CITIZENS AND OUR VETS MUST STOP NOW!! Although with all the lies and propaganda [edit] the media., corrupt lawmakers, the cdc, dea , prop , fda are feeding the public, pain pts have been thrown under the bus!


So thankful for articles like this. And another problem with mislabeling those deprived of the proper medications that have to desperately replace them with substance abuse options is that they are permanently labeled as abusers on medical history and insurance records and will most likely never again be given a chance to receive traditional pain management again in their lifetime.

Barbara Lampher

Extremely well written and true!


I appreciate you, Dr. McKinney. As a 27-year sufferer of severe chronic pain, I have been treated by many doctors and with many different treatments. I have to say that I disagree with an earlier comment saying that using opioids and also using alternative treatments makes for the best result. As usual, that only applies to those who suffer specific pain problems. As a Traumatic Brain Injury pain patient, I do use biofeedback and relaxation techniques, but physical therapy such as swimming is not something that I can do. Also, this is not a result of the Republican party. I have been active in trying to educate legislators on the state and federal levels and it’s very obvious that members of both parties are not informed with the facts that are available, and no one from either party has stepped up to speak for the CPP population. They ALL follow the lead of treating addiction and fail to realize the collateral damage to chronic pain sufferers. This is not a political issue, this is a federal government agency run amok issue. My doctor was arrested (completely bogus) by the DEA in June of ’18. It’s been nearly 120 days since I requested copies of my medical records since that doctor treated me for 17 years. I STILL don’t have my medical records. Does anyone know how difficult it is to get a doctor to consider treating a chronic pain patient who can’t provide medical records to document the previous successful treatment? How can the DEA get away with this?! It’s like the German Gestapo has been reborn in 2018 America! There are no rules or regulations that govern the DEA.
Thanks, Dr. McKinney.

Maureen M.

Excellent piece Dr. McKinney. It actually made me cry reading it. The fear of this unknown future for our CP community is severely overwhelming for us.
While my meds have been negatively manipulated, I do continue to get medication, and each month I go to the doctor with anxiety of ‘is it my turn this time?’ Our suicide rate is increasing tenfold and therefore I also fear that that is where I will end up. God hear us and help us.


This is almost EXACTLY what has happened to me. But I only moved states. Trying to find a decent doctor to manage my care and write my prescriptions in this new state has proven impossible.
I was stable medicine wise for at least 3 years. I’m not now. It is draining and soul crushing.


Cindy, you have described my life to a T! It is not fun and I have often wondered if I had been treated aggressively with opioids instead of conservatively how much better my life would have been and will be. As I became increasingly bed bound, my meds were not increased to meet my needs. Frustrating to say the least. Just started with a new pain doc and am thinking of giving the spinal simulator a try. Scared sh##less!!!!!! But cannot survive without relief. Anywho, wanted to let you know there are many of us in the same situation. You are not alone……..


What a great article! So what to do now? Can someone with authority take on this huge societal issue? My pleas to my normally compassionate Dr are falling of ears that cannot help me. After 20 yrs of successful pain management I am being given the choice to become unstable no matter what I choose. God knows, if I could have found relief somewhere beside a Dr office I would have done that years ago and not be in this boat.
btw/check out the 2019 CMS Opiod Guidelines


Thanks for the letter . I have a diagnosis finally. Annular tears outter part of lumbar disk. But awful pain for 8 years. But thanks to oxycodone and Percocet I can have pain free hours, but like lawyer, not a normal life, when the crushing intense pressure starts I lay down and take pain pill. Then I can be upright for awhile longer. I spend hours a day laying flat. Much of My life is wasted. It just doesn’t heal, Fusion is now an option. I had a good Dr who gave me enough meds. No more than 60 mg a day usually. But this dr moved. Now I’m nervous. And new Dr at a pain clinic said I need to taper. Well why?
Went thru the other drugs. For instance Celebrex. My god that is a strong znASID. You can’t take that long term. Oxycodone works fine despite constipation etc. all this paranoia is crazy. Oxycodone has a rightful place to help people. Please fight for legislation to preserve our rights. I’m not addicted. I don’t even like it. But he pain is agony. It’s just horrible.
I can’t imagine to not have any answer. At least now I know fusion is possible,
New legislation just gone to president to sign, it seemed focused on addiction which was good. But I echo the person who asked aren’t or isn’t a certain mg a day accepted for use? Thankyou


For all individuals that suffer with severe chronic pain and have left a comment what do you propose we do? How do we end this? This isn’t about an opiate epidemic! Look at the numbers. It’s our very own government, politicians, and Big Pharma’s! It’s all about money,power,and control with them. It is inhumane what they are doing! Enough is enough! What about a class action lawsuit? Is that an option for us? We need to stand together and fight!


It is sad, very sad when a Doctor takes an oath to do no harm and then is forced by beaurocricy to do exactly that. When does Caring trump Liability? Yesterday I was injured slightly on my job. Per policy I went to RediCare. While there I of course had to list my medications and what they were for. I listed my CRPS stage 2 and the meds I take. When first seen by the Doctor he asked if I was in pain, and of course the answer was yes, but, I told him I am not here for any medication, just an X-Ray to make sure I don’t have a fracture. From that moment on I was treated like a junky wanting to get high. After a few minutes of this change in attitude I spoke up. I asked “Do you have any knowledge of CRPS? the response “No, never heard of it” “how about RSD” the response “yes but that’s all in your head”. I knew right there that this was a waste of time, I politely asked if i was going to get the X-Ray, was told no so I left. The degree to which the treatment of me coming in with a crush injury from a construction site was so drastic it was unbelievable. They went from professional caring for an injured 70 year old man to caustic critics facing a druggie. Not fair, but reality and I know I’m not preaching to the choir on this site.


i became an unwilling expert on chronic pain and one of the first things I learned was that chronic pain can become a disease in and of itself after any detectible injury has healed. To help others understand this and believe it I offer the example of phantom pain known to often exists with patients in a limb that they have lost due to an injury. If you pause to consider how the brain can cause someone to experience pain in a limb that is no longer there you can begin to appreciate how someone experiences pain without any observable reason.

As neuroscience makes progress in understanding the function and interplay between brain and nervous system there will no eventually be a better explanation at the cellular level but until then people need to be given the benefit of the doubt and treated with compassion. There are much easier ways to get a fix for recreational addiction then going to a doctor but the nation and in particular the current controlling party is once again trying to legislate morality all the while exhibiting their own immoral proclivities. This is yet another example where I think many Republicans are voting against their own self interests when they vote Republican.

I am reluctant to make a political issue of chronic pain but everyone must understand the dynamics that are fostering the war on opioids. When you vote please pay attention to the position your candidate is taking toward “the opioid crisis”. Republicans have a large Evangelican base and is motivated to select and vote for candidates who would enforce their moral vis of the world on everyone else. Also ask yourself whether you think the rich are getting richer and the poor are getting poorer and whether a tax break to the bottom wage earners would spur on the economy better than a tax break to the top. How much of that money the millionaire and billionaires do you think is spent vs what would be spent if more of the tax breaks would go to lower earners.

Kathleen Ganley

I thought the amount of opiods that could be prescribed is now 90 mme daily. Has that changed? Why are these physicians not willing to follow the guidelines and prescribe this amount?


Dr. Scott - what diagnostic ‘label’ would you suggest we CPP be given?
I can’t believe that a class action lawsuit hasn’t yet been brought into legal action. This could be a needed legal avenue, which may end and/or FORCE our situation into the spotlight.
Something has to be done.
We’re losing hope, our physical maladies are NOT going away and we’re dying of malpractice, negligence, abuse and torture.


This is an interesting article and no doubt Dr. Scott means well with his concerns. CPP being denied opioids they’ve used for years, sometimes decades, may want better insurance coverage for expensive addiction center programs. But of course the real answer to our current situation is the ability to get the meds we need to function and have quality of life. Denying ill patients in pain relief that is easily obtainable is about as mean as one human can be to another. No doubt its a financial boon to addiction centers, so I guess at least some one is happy about it. If only the CDC could figure out we aren’t addicts.

Elizabeth E. Chute, Ph.D.

How about differentiating between people who have a legitimate need for pain medication, such as people with arthritis, bone disease, fibromyalgia, cancer, etc. My concern is for the individuals who will consider or commit suicide due to their pain levels if they lose access to their pain medication. Why not consider them pain patients?

Michelle Lynn Stevens

Dr Scott,
I struggle to find the words to describe my years of living with chronic pain. Let’s not forget the toll it takes on my family. And now, talk about adding salt to an open wound. After 10 years of high doses of narcotics, I subjected myself to going into a hospital setting, but really, a rehab facility filled to max capacity with drug addicts, I chose to detox because I didn’t know my pain anymore. My body had become ravaged with pain, why? Because it demanded the high doses of natcotics in order to move. I couldn’t imagine what next? All while still exploring anything and everything as a solution, anything. I had a heck of a time finding a hospital or medical facility that accepted patients suffering a chronic medical diagnosis that wanted to detox who wasn’t an addict. This was so troubling to me. For one, there were no such medical facilities and two, there were no such patients. I was an unusual case. Where are the statistics on patients such as myself seeking detoxification from prescription medication taken responsibly for years? I was treated like an addict. I had to follow rules, I wasn’t allowed caffeine, family visits, I was monitored every hour of every day. I did what I had to do, I made it through. It was an incredibly humbling experience. I only wish others, especially now, being left almost with no choice. To find a medical facility, detox, and start over. Thank you for your post.


Aye- - - - -Men….!


I was involved in a serious car accident in2009 and luckily survived. 58 surgeries later with a fused spine and neck I live with unbearable pain. I made a decision to stop taking all pain medications in 2016 because of the way I was TREATED by my DOCTORS. Random urine tests, counting pills etc. I never filled anything early, months went by with no pain med requests from me, yet I felt like a crinininal or a junkie. I don’t know why being chronically ill is grounds for the shame we have to endure. Thank you for this article! I now use medical cannabis and it helps emmensly and the community is kind and supportive.

Marji Booker

Dr. Scott that was the most poignant, on target article I have ever read. We need more doctors to stand together on this very subject. One thing that seems to also be lost is there is a large segment of population that has chronic pain and the opioids allow us to go to work and PAY taxes that pay the Legislative body’s salaries as well as the other segments of government. In some cases we don’t even have our doses changed as we have found a good manageable value.

Thank you for your input and I really hope more doctors join the cause.

Eve Zamath

I’ve been praying for God to send a person to stand in the gap to help, as many are refused medical treatment, that would be a solution, but we’ve been written off, saying to Take a pill. We live in despair & can’t speak for ourselves. Thanks for letting others kbow our plight as we aren’t drug abusers, we use them only to manage severe pain.

Brenda Slater

God Bless You, Dr. Scott McKinney. I am one of those CHRONIC PAIN people. That suffer 24 hours a day, 7 days a week, 365 days a year. From your hand to God’s ear.


First let me say thank you for being one of the few to address those of us who lead productive lives while on prescribed does of opioid medications. It is ever so true that we are miss labeled or just kicked to the curb because to acknowledge our dependence on opioid medications is tantamount to calling us drug abusers in the current climate. That couldn’t be farther from the truth. I have Chronic Regional Pain Syndrome Stage 2, and if you know about the disease you know that it doesn’t get better, it only gets worse. On the McGill pain scale CRPS is higher than just about all forms of pain period, second only to amputation without anesthestic. So to say that using an opioid medication as part of my pain management program makes me a “bad person with a bad problem” in today’s uneducated politically correct society. Bad person, addict, junkie - sure, right, yes, I guess I am. I hold down a 60 hour a week senior level engineering job, have been married for over 40 years and have a full and happy life. But the kicker is..I NEED the opioid medication to do that. In five years I have never increased the dose. I use many alternative therapies to go along with my low dosage of opioids. That makes me a different breed of cat right there.
I find that many people I connect with who suffer severe chronic pain rely soly on medication for relief, and that’s where they fall short (in my opinion) because without the alternatives of meditation, stress control, accupuncture, and activeties such as swimming, walking etc. the only solution is medication and that means the doses keep going up. My point exactly. So treat the problem, don’t punish the solution providers.


This article is spot on! A person that has actually listened and read what is going on out there in the real world for thousands of us. Hopefully the people making decisions will read this and see what the need truly is.

Jon dow

Where have you left are doctors not being doctors ? They are to afraid to be a doctor any more . because of the law are present wrote in law . and are governor rick scott . he dose not care about us in fla . so now i live in chronic pain every day .

Jane Michael

I totally agree with this article. I have chronic pain, now 18 almost 19 years via 5 back surgeries and a lot of nerve damage in hands and feet. Drs make me furious at times trying to “catch me” cheating on urine screens and being downright rude at times. Please make sure something gets done about this problem. HELP!!!! —. Jane M., Ohio


This guy nailed it.i live in fear and worry and pain everyday now that those in power have put their nose into my Dr.and my life.im literally scared everyday that my life will be taken away because of the mishandling of this issue x


Your article is so true every word, correct. I am one of those you speak of. It took a year for 1doctor that was willing to help me, put me on the right meds, previous to the meds I tried physical therapy, massage & chiropractor which didn’t help the pain. I had been on the same meds(fentanyl patch) for 20+ years, same mcg never requested an increase or other meds, this allowed me to work & for the most part have decent quality of life.It didn’t take the pain away fully & there was times of break thru pain buy for the most it was helpful. Months ago I was told I must wean& the pain management continued to lower quite quickly, to the lowest & am told soon to be off, it has destroyed my life as I knew it now I’m enveloped in unbearable pain.Ive asked what I’m to do now & am told that most people are going to marijuana, well I’m skeptical but doesn’t matter, I had to take early retirement due to not being able to work I am on very limited income I can’t afford medical marijuana,the oils & products like this are too expensive & are not covered by insurance. So what do I do, patients like me , do we hang on or do we just those who could no longer bear the chronic pain.

Maggi Stebbins

Certainly, makes sense. Thank you, for bringing this information to light… The business end of and Medical Record keeping. The entire system is a mess and behind the times!

Jessica Reible

@ Billy. You can find your state & chronic pain patients eagerly trying to stop this madness.
There have been 2 rally’s so far this year & another coming in January 2019.

Also a local state group on Facebook exists:
“your state name” Don’t Punish Pain Rally
to find the group discussions & ideas going on in your state.

I found the group through this page as well. What a blessing! I can talk with other Chronic Pain patients that understand exactly what we are going through on a daily basis.

Barbara Mills

May 2018 my primary care dr decided to stop prescribing my opiates I was thrown into this quagmire. I was sent to a cooperating pain mgmt dr who first helped me with tapering off of my 2 pain meds and with my diagnoses he felt I likely would need to be on something still for pain - he put me on a low dose of tramadol However, I had a bad reaction to the tramadol and it threw my migraine problem into overdrive and what had been in control for 2 years became chronic daily migraines once again and I suffered for 2 months until I could see my neurologist because I was unsure if it was the tramadol or something else but my neuro was pretty certain it was the tramadol. I came off of that and my doctor put me back on a very low dose of oxycodone at only 5mg twice a day - now my body had been used to being on oxycodone 3-4 times a day for to 15 years + fentanyl so I knew this dose was not enough & I found myself getting about 4-5 hours of some relief then going into withdrawal between 12 hour intervals til I could take another pill. I called my pain mgmt dr about this and was told I needed to come in to see him about this but the soonest appointment I could get was nearly a month away so I had to continue to suffer through this hills and valleys issue until I got into see him. Waiting a month when a patient is in withdrawals is cruel and unusual punishment to get an appointment and could have been handled by phone calls especially when I was requesting an increase of one pill per day to stop the hills and valley effect and the withdrawals between doses. Doctors also need to trust that patients know our bodies by the time we come to pain mgmt drs we’ve been to so many other drs and have tried so many other things that we know what works & what doesn’t. My dr listened to me at my appointment -he gave me the increased dose of one more pill per day-I’m grateful but sad I had to wait so long for what could have been handled by phone.


There are many articles here about doctors stopping providing opioids Rx’s. Is this in certain states?

I live in SW FL and have a pain manager and get what I’ve always gotten. Recently we’ve discussed gov’t restrictions and he said that he’d fight for my current dose, as it’s not that high. I have concern for when my current dose is no longer enough, but there’s no sign of any foreseeable stoppage by him.
One thing -reading this blog makes me wonder if I had been given a higher dose years ago, if I would function better. I’ve had chronic pain for 10 years, and my ability to function has gotten worse over the years; partly due to exhaustion and partly that the meds definitely have made me less smart, and I used to be a lawyer. Plus the opioid induced constipation in spite of everything I do to fight it and very painful hemorrhoids. And my meds for my chronic pain do nothing to help pain in my arms from a car accident, which impairs lifting etc.
But, from when my primary pain condition developed, after a surgery, I’ve never been able to work. I seldom go out. Can’t travel; my BF does that alone now. And my ability to care for myself has become more and more limited. I live alone and frequently feel that I need to be in assisted living. Which, at age 61, could not afford at this point even with LTC insurance.

I wonder how many pain patients on opioids have full lives due to their meds, vs people like me who have managed not to commit suicide, and can enjoy a good book or TV show, but not much else.

I wish other commenters would reply to my questions..


I my self have suffered chronic pain for decades and also the terrible trials of opiod addiction and withdrawls. As an opiod user for over 2 decades i found that the medication i was being prescribed for pain was also actually damaging my body even more over the years. Why were these Drs so carelessly allowed to over prescribe to so many of us leaving many patients damaged in a cycle of opiod addiction for years to come.

Sue A Lewis

The rules were changed by the polititians. Doctors were left scrambling!

Kris Aaron

One solution to the “problem” of treating chronic pain is to legalize and regulate recreational drugs the same as alcohol. Let physicians prescribe any drug a patient needs, if there’s serious objection to selling narcotics at liquor stores.
Addicts wouldn’t be committing crimes to get the money to pay for a fix, children wouldn’t be able to get narcotics (no store or doctor would risk their costly license by selling to underage users), and everyone could get on with their lives.
Drawbacks? Oh, you bet: The Drug Enforcement Agency would be put out of business, saving taxpayers billions. Law enforcement wouldn’t need to pay drug agents’ salaries or buy the pricey toys used to raid drug houses. Addicts could nod off at home instead of crusing neighborhoods looking for houses to rob.
Politicians would be stripped of their favorite “tough on crime” campaign slogans. We’d be spared the pitiful sight of weeping people holding up photos of their deceased, overdosed relatives as families are trotted out for the cameras by smug politicians (up for election) who promise to “clean up” their districts.
Drug cartels would be put out of business. There’d be no more contaminated, poorly-manufactured and overpriced drugs sold to desperate users. Fentanyl-contaminated heroin would become a historical footnote instead of the reason for thousands of deaths annually.
Chronic pain patients could get whatever opiate medication they needed to return to living full lives and holding down jobs.
Will this ever happen? Not so long as keeping recreational drugs illegal is profitable for people in power. A few elected officials understand the connection between prohibition and profit, but nobody ever got voted into office by being “soft on crime”.

Mary Stephenson

I’m sick of the chronic pain patients that have to pull the weight for all the real junkies out there! I’m a real chronic pain patient and have been since the early 90’s. Almost 30 years. It’s not fair that I’m permately injured and really can’t function because I unfortunately need opiods to live my life. If I had dietebes or high blood pressure or any other kind of illness besides chronic pain. I could get my medication to be ok daily. But I’m unfortunately I am NOT. I’m a chronic pain suffer. I’m not being treated as a human with a chronic pain issue. I’m not allowed to be treated properly with the proper medication. This is really unreal, if you think about the torture and the end result that a lot of suffers end up doing. Committing SUICIDE a death to end it all. Why because the pain is overwhelming and we take our own lives! Think about this people. This must tell you all that if our own result is to comite SUICIDE not a mental issue. It’s a pain that never leaves, it’s there 24 hours a day, every minute of every day, every second of every day. You can’t sleep, you can’t eat, you really can’t function as you did before your disability or your injury when you had enough medication or didn’t need it to function. I would NOT love to NOT need an opiod to function as a daily human being to live a chronic pain free life. Just would be in heaven to function without the need of opiods. I would be the happiest person in this world! Think about it people, you could get your medication when ever you needed it, because it’s not a opiod. Oh how joyful! I remember these days of not needing medication at all. Never took an opiod! But when permetaly injured at age 34 and finally 2 neck surgeries later I got better somewhat but still was in escruating pain daily when I had the chunk of disk laying on my nerve root at C5-C6 in my neck and right shoulder. A chiropractor swung my neck so hard that she blew my disk out of my neck when I was 34, my life got worse daily. HORRIBLE


Dr. Scott

Thank - you for explaining this issue- I personally am a fulltime Dad and this hits home to me and gives me hope that some do see us! I can tell you it feels not only ignored-silenced- but just not what I believed was going to happen- But with so much of the media attention on treatment and addiction that’s how they think they will fix it! Just label everyone as addicts -

Billy- as another brother that has tried and continues to try to be heard I stand with you! I just am frustrated with politics because I think to myself- really none of these “lawmakers” have a family member- friend or is it they seem to have perfect health 🧐!

Thanks for the great Article - Dr Scott McKinney and as always a huge Thanks to The National Pain Report “Ed” who also like Dr. Scott has time and compassion to continue in life and use their talents and hearts to better others!




We should never be in this position. Don’t categorize us so that you can bill insurance for us. Give us access to medications that should not have been taken away from us.

I don’t accept the sympathetic tone of the article. We don’t belong in the DSM-V. This is a societal issue that needs to be addressed. We need to be recognized as people who are deserving of legitimate treatment and not be shoved off to yet another specialty.

Particularly not a specialty that de-legitimizes our physical symptoms in favor of arbitrary psychological labels.

Stand with us to get our problems addressed by medical doctors who treat pain. We should not be permitted to sink into the shadows. Now that we don’t have a place to land, addiction specialists and psychologists shouldn’t grab at us. Spinal cord stimulator companies would like to grab us up, and companies that have an interest in injectable steroids also have tried to get reimbursement rates increased so the therapy becomes more accepted — but wasn’t it just a few years ago that they found contaminants in those injections that was killing people?

No, we deserve legitimate care.

You know that, too.

Just for kicks,how about “Suffering Among You” (SAY)…
You make a good point,Dr Scott,we are legion,and unknown and unrecognized.
I’m a chronic,and have been looking for a place to make a stand.So far it’s this site,and letters to my representatives.
Thank You. Billy