Is Our Government Ready to Listen on Chronic Pain and Suicide?

Is Our Government Ready to Listen on Chronic Pain and Suicide?

The recent discussion on chronic pain and suicide on the National Pain Report has elicited some significant and candid responses from our readers. The temptation is to look at the issue in a binary way—people are being denied care and many are choosing to either contemplate or actually take their own lives.

But there’s more—as Dr. Terri Lewis asked on Twitter recently–Are policy makers, clinicians, patients, and payors sharing the same mental models?

The answer is most assuredly not yet.

That’s why Lewis has been leading a conversation about suicide with our readers and the pain community. People have been reaching out to her—and we caught up with her over the weekend to find out what she’s been learning—and what she plans to do with what she’s learning.

National Pain Report: “You have received a lot of responses from people who either have actively contemplated suicide or loved ones who shared their stories about people ending their lives. What are all those responses telling you?”

Dr. Terri Lewis: “These responses are telling me that the health care system that serves persons with multiple chronic conditions is not working. And it sure isn’t working for effective governance either. Whether by policy design or through overspecialization, the lack of adaptation to the needs of persons at whatever life stage they find themselves operating within has created significant disruption in ways that are not good for communities, health care systems, government services, or families.”

The words folks use to describe their feelings of helplessness and disempowerment to regain control over the quality of their days are consistent, palpable. I have several longer-term objectives that include documenting that suicide is often (not always) a considered choice in this underserved population of people, and that this choice is being made against transformative changes within our health systems across the nation.

These transformative changes amount to serious encroachment by the legal system into the practice of medicine through the application of surveillance tools that are engendering decisions which reallocate resources away from health care and toward enforcement controls processes that are unrelated to managing health outcomes. We need to seriously examine the costs to the system that this is inserting into the entire system and the long-term impacts of building to a system that has so little positive return for communities. The current course is unsustainable. It prematurely moves people into positions of disability and reduced economic circumstances. This has all kinds of downstream consequences.

National Pain Report: “You have gathered an unbelievable amount of information through the survey—What are you going to do with it and how will you distribute it?

Dr. Terri Lewis: “I’ve concluded that I’m engaged in a process of studying the intersection of social justice and healthcare anthropology. The current medical, social and cultural context is very impacted by political influences working on changing population characteristics. These exert a large, and under-addressed influence on policy development.

If our system is being transformed in ways that have negative consequences, we need to understand what that might mean for those who are affected so that they can become more informed and can advocate for more participation in personal choices and public processes. The information gathered will be shared with respondents, advocates, public officials using a variety of push techniques. Above all I want it to be accessible and to help us push toward asking the right questions, allocating the right decision resources.

The emerging patterns reflect enough data to support inquiry in several areas:

  • Who are the people affected by this problem?
  • What are their characteristics?
  • What are the characteristics of the context in which this problem is occurring?
  • What role do various parts of the system (government, medical professionals, insurers, law enforcement, families, community) serve in contributing to the overall observable problem?
  • How should this information inform the decisions we make to manage our systems?

National Pain Report: Final question—it feels to me in reading the conversations that our stories inspire that there are so many things that need to happen–more patient centered care—more access to mental health services–affordability—It feels to me like for the first time in a long time, federal policy makers are beginning to realize “Houston We Have a Problem.”  How can we create more momentum around that?

Dr. Terri Lewis: “The large problem of social justice research in this area is confirming the personal voice. We’ve all been trained to shield our privacy which means we have lots of layers of profoundly ‘ableist’ designs that get in the way of figuring out what we are dealing with. We have to ask ourselves who is affected? How? Are there harms and what kind of harms? What are the systemic barriers that are getting in the way of choice-making and control of personal resources? What works and what doesn’t work? What other actions influence outcomes of decisions made within multiple political processes? How can we use this information to inform public policy decisions while breaking down faulty beliefs? Person centered policy requires us to ask these questions and design systems which continuously assert the rights of full participation by persons who are most affected by the outcomes.

Importantly, how does the individual with limited resources influences processes in their own communities using the tools at their disposal? They can do this with their voices and by working with others who share their needs and concerns. They have to be informed, they need to understand that they can make a difference by speaking out and by giving notice that they expect to participate and to be accounted for.

I’m really excited by the people who have responded to this tool. They are frustrated, brave, and have just had enough. They seem to fully understand that their future and the future of their children are in serious trouble. This is moving them to action. And we need to magnify their voices.

I’m in the same boat. It has moved me to this course of action. So I intend to keep paddling. The alternative is to do nothing, and that makes no sense to me.”

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Authored by: Ed Coghlan

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wedle

The VA replaced the morphine in my pain pump with water. Then took away medications I had for pain for 18 years. I told my VA psychiatrist when I have a heart attack I will push the Freedom Alert button, but I will tell them I will not wait for any help. There is no reason to extend the suffering. I will finish it myself. Since I gave up hope, I feel much better.

Adam H

Extremely drastic actions quite likely only possible way to end guidelines..So many letters emails to politicians and those in charge trying to be civil, reasonable and diplomatic have gained us absolutely NOTHING! How can we get through to these people peacefully? I am seriously beginning to realize the government is not going to ever be reasonable or meet halfway. Things are likely going to have to be done the unpleasant way we all have done everything possible to avoid. These opioid guidelines are causing society to lose their manners and patience..but we truly have tried.

Corruption Kills

Only if the right people get their price $. FDA, CDC, DEA, these agencies take in a lot money. They work together taking their orders from the senators, attorney general, and the president.

Voakley

The FDA and CDC are the main two entities responsible for this. First, the Center for disease control is putting their nose where it doesn’t belong. Which that has led to a bad bad e-coli breakout, ( I know without a doubt that was the plan). Then FDA, well they’re responsible for putting out false statistics that we’re given to to them by the CDC. Then we have their cohorts, the DEA. I can go on, but it rages me.
Our life, not theirs. They have been handed WAY TO MUCH power. Everyone just submitted, people of what used to be the land of the free and home of the brave is now increasingly falling down to their knees to a government that is supposed to work for us. They are our employees, and need firing ASAP. Purposely, causing, not just our country but every country extreme devastation. The worst part is this was all planned and there are no checks and balances. We are human and can make our own decisions, on our lives, what we eat, drink, swallow, smoke or not smoke. This place has become so complacent to the Gov. People are becoming more afraid to stand up for themselves because everybody is being bullied into submission.
How soon will it be untill they are allowed to tell us what to wear on what day. They say we have rights, I’m only seeing those being broken and taken away.

Ali

The FDA,CDC, etc…said relieve pain a few years ago. Patients with pain were treated with respect, dignity, and appropriate pain medications.
Now FDA, CDC, etc….says no way.
Pain assessment too subjective.
Stop all opoids, pain medicatin, and physician clinics serving chronic pain patients.
We are told yes to pain meds, decade passes, no to pain meds,
And now STOP all opoids and pain medicatin now today. No more scripts refilled by any physician’s office.
I am only a stastictic citizen at the whim of these agencies to do with as they will. Like the syphyliss study deaths, formula babies third world country deaths, newborns thyroids radiation with thyroid cancer in there latter years.
These agencies change guidelines without duediligence and change the medical care causing suicides, profound depression, profound withdrawal,
pain with NO medical relief, and physician’s refusing patients medical care because they have been bullied into submission.
As a retired RN I have seen these agencies change medical care into medical negligence and not change one guidelines. Marijuana is only a band-aid on this travisty.
They are pushing it thru to show the chronic pain patients they are addressing there pain. When in reality it’s fool’s gold. Marijuana can be used medically but only by a small percentage of chronic pain patients.
We are a stastictic on there studies, a medical annoyance, and these agencies are not going to hear us. Patients have died, suffered, and been mutilated by these agencies over the years.

I pay extra for better insurance and my co-pays ad up and the U.A’s add up.So now I am paying to make myself worse being tapered.This Obama care has done nothing but raise every medical thing up.It is going to go up more.This is pure torture when you see your life going away.When you can take care of your home and your life.The drug wars have never worked and won’t cause of two reasons, they don’t get it and money! You can’t tell me how much I hurt and how much helps and don’t. It’s not to hard to find out if someone is doing what they are supposed to or doing wrong.Why is people that doesn’t know or feel what we doing making laws and telling doctors what to do?

Ali

Again time has elpapsed yet only very small changes that don’t address the medical negligence the FDA,CDC, etc agencies have committed. The chronic pain patients are now still denied safe medical care prescribed by there physician for pain medicatin.
Suicides, bulling, releasing us from physician care, and complete isolation to appropriate medical care we received before these new guidelines.
Where are the guidelines that will give us back our medical care?
We were legal, abided by guidelines, and followed your rules but we are being judged and convicted without duediligence.
Stop being my judge and jury you don’t know me.
You require begging, crawling to you, recinding all rights to appropriate medical care? What does it take for the FDA, CDC, etc to correct there medical negligence ignorance? Help us because our lives are being bullied and dehumanized to the point of profound depression.

Lynne Hall

We have no voice and the pain clinics know it. I left real medical care because my surgeon was told if he wrote kid pain scripts he would loose his operating privelage. His own wife is sick as well as her health is declining.
The doctors aren’t getting any messages of hope either.
I was one of those kids the Shriners Hospital wanted to support. I’ve only had those few years with my surgeon that I felt like a person.
Now I have lose everything. I’m alone. I miss traveling and seeing my grandchildren. But I’m at my moms in bed all day. I can’t even go to church. I built a home with my disability but I seriously doubt I’ll ever live there again.

Is this life? You speak of a voice, but the pain management clinic is a mill, with one doctor signing the government allowance of opiods, with PAs to see you.
Now I’m informed that even tho my problems are scar tissue in my stomach, I must agreed to steroid shots in my back to continue with them.
If I complain I will be sent down stairs to the Methadone clinic with the drug addicts.

Trust me I listen to how they talk about dropping patients. I hate this place and feel like a criminal for getting sick as a child. But after 9 denials from other doctors, we all know to keep our mouth shut.
You should listen to Dr Kline on UTube. He knows what’s really happening.

As for sucide the only reason for any of those thoughts is because of our government. Not depression. Fix them and give me back the real doctors I had and I’ll live a productive happy life. Keep me prisoner to a bed and yes sucide will probably be my only hope to in the pain, it’s not in my head.

I just can’t believe this is the same country that gave my family 2 Purple Hearts.

They should have let me die if they were only going to torture me.

You need to write to doctors. They never heard of the HHS pain survey!

I knew that I was not alone! I am thinking strange about my life, my mind is working overtime on what I will/must Do? I don’t have a life period. I can’t and don’t clean my body like I should, I have never in my life been like this! I’m tired! Telling my story is old. Several months back I was wondering when anyone would keep up with the number of suicide instead of the OD’s and addicts deaths? Just posting is hard for me.

Max Beichert

At long last, there is finally genuine hope for those who have battled the heretofore largely unseen and unseemly adversary to chronic pain relief, the scourge of which is the medical practice of dosage “tapering,” which could just as accurately be described as “tampering.” After two years under the 2016 “CDC Guideline for Prescribing Opioids for Chronic Pain,” we now have the first real opportunity to bring into being a relatively “minor” change that every chronic pain patient, physician, pharmacist, caregiver, and even government official and constituencies alike, needs to make happen in order to first stop the “bleeding,” which is the devastation of reduced patient functionality that has been inflicted on chronic pain sufferers, albeit unintentional.

The result of not acting now is to risk forever to continue to lose pain sufferers to illicit and dangerous drug procurement for adequate relief, and for some even the ultimate finality of loss of life to suicide. Sadly, though not unexpectedly, both of these are creeping up on shocking initial projections, with an estimated 10,000 or more in our small state alone subject to this misguided and misplaced “tapering” torture, the result of which is the reduction of prescription efficacies, some even without dosage reductions, eventually no longer providing a minimum-effective level for maintaining a livable functionality.

In 2019, and without fanfare, the CDC has finally and formally admitted, both verbally and in writing, that its “guideline” was never intended to be taken as an adopted federal “standard,” or to be used as the sole basis for any individual state’s new legislation, but rather was offered more in the hypothetical and abstract sense, in entering previously uncharted territory. The place to start, for reform and amendment of adopted law, is with your elected representative(s).

Rob

I don’t have any illusions that the situation will change. I have adopted the self management model of pain care by self medicating with alcohol and illicit drugs.

Lisa Ann Hall

I have no life at all. An don’t forget that all the Drs are to scared to write your prescription because of the government. WAY TO GO AMERICA

William

How jacked up are the so call doctors!
There not doctors anymore, MORE LIKE I’m your dad, I know you better then you do….
I’ve been wanting to go back to work for years and of course my doctors do not listen, AT ALL!!!! They have taken what works and have turned me into a pin cushion!!!!! Cut me down on my medication………. I [edit] HATE my life!
I have no privacy anymore, instead of one doctor I have more…. don’t worry about it, I’ll pay for it, I used to have a good doctor. I got into a car wreck caused by an illegal immigrant, no accountability, he walks away, I lose everything, [edit]!!! They have there own life… Instead of being self efficient I’ve turned into a pain in my kids ass… I’ve evan thought about going to the streets for my medication!!!
Yes! There turning honest people like me into a junkie!!! NICE!!! I go to see my doctor and I’m treated like a kid! How [edit] up is that!! I want a real doctor, I want my privacy back, I WANT TO GO BACK TO WORK!!! They say this country is the land of the free, RIGHT!!

Ali

One can ask questions, view effect of guidelines, and search for answers but this has taken the lives of the chronic pain patients and placed them in an arena of shame and harm’s way.
Medically no patient should have been placed in harm’s way.
These guidelines are promoting a great travisty of injustice on the chronic pain patient.
How can one wait to stop this unjust cruel medical care from our own government agencies that are suppose to benefit us?

Hallie Villano

I’m slightly heartened to read that the gov’t MAY BE ready to realize they’ve OVERDONE IT … I say only slightly because i fear that by the time ‘OUR’ gov’t does anything rational, like get OUT OF THE DOCTORING & PRESCRIBING BUSINESSES, and allow doctors/PAIN MGMT. SPECIALISTS to PRACTICE MEDICINE, it will BE TOO LATE FOR MANY … INCLUDING MY HUSBAND WHO HAS BEEN SUFFERING & NOT LEADING A LIFE FOR A MONTH, NOW. OUR MARRIAGE IS SUFFERING; HIS LIFE IS IMPERIL … ARE THERE NO GOV’T OFFICIALS WHO HAVE RELATIVES WHO SUFFER FROM PAIN/PAIN RELATED CONDITIONS WHICH ONLY, ONLY RESPOND TO OPIATES … HAVE THEY NO COMPASSION FOR THESE PEOPLE? NO, THEY OBVIOUSLY DO NOT … HOW CAN THE PEOPLE MAKE THIS FARCE MORE TOP OF MIND …THE TV NETWORKS NEED TO PUBLICIZE THE PROBLEM MORE … MUCH MORE!!!! ALL WE HEAR IS OPIATE CRISIS … WHAT ABOUT THE PAIN CAUSED SUICIDE PROBLEM??? MOST HONEST PATIENTS DO NOT TAKE FENTANYL … WHICH IS THE PROBLEM … DISALLOWING DOCS TO RX OPIODS HAS CREATED A FENTANYL AND HEROIN EPIDEMIC … PEOPLE HAVE TURNED FROM ‘HONESTLY PRESCRIBED PAIN KILLERS’ TO STREET DRUGS … AND I WOULD VENTURE TO SAY THAT MANY MILITARY SUICIDES (20/DAY) ARE CAUSED BY ABSENCE OF PAIN RELIEF … WHAT IS WRONG WITH THESE PEOPLE?

Ali

A travesty of injustice for those with chronic pain has been ongoing and not one CDC, FDA, etc….person has once ounce of empathy to stop this.
The leaders in the CDC, FDA, etc
have allowed there guidelines to cause suicides, profound depression, demeaning, bullying, and quality of life affect thousands of patients yet they continue on there path of destruction of chronic pain patients.
These leaders are allowed to change guidelines that cause a travesty of harm to patients.
There own oath ” first do no harm” has been trodden on and discarded.
This change in the guidelines is a flagrant abuse of power. They should step back and evaluate who they define as drug addicts.
I have been placed in there guidelines and they have bullied me, debased me, dehumanized me, but worse they have taken away my unalienable right to health care by my physician.
The use of there educated
Degrees and position they are using as a purpose driven power play while chronic pain patients live 24/7 in jeapodary of there medical care.
Our countries history of medical travisties is recorded in history.
Syphilis study, giving third world babies formula, and radiation of newborn thyroids to name some.
Where are the checks and balances on these CDC, FDA, etc.
Who evaluates there outcomes?
Suicides have happened because of there guidelines yet no action taken to show they have to answer to this travisty of medical care.
How can they continue this road of continuous harm, bullying, and complete disregard for chronic pain patients.
I am appalled this continued travisty of injustice is allowed to continue.

C B

To all of you who are being forcibly tapered, I read the CDC guidelines and they are for primary care doctors and are recommendations only. There is even a statement about forcibly tapering patients can be psychologically damaging to them. I encourage you to report doctors to their state medical and pharmacy boards if they take everything away. You can send them anonymously if your afraid of repercussions. Venting on these websites feels good but accomplishes little. Send these letters to the press, your senators, the CDC, FDA, DEA, anyone you can think of. I know someone who had a doctor try to force this ITP pump on them and when they brought up to the doctor they had spoken to the state pharmacy board about these so called forced tapers (they are not going on in this state) and forcing interventional pumps etc. on patients he backed off tapering. Good luck, keep fighting.

Vincent Morraele

Taper sugar, corn syrup, Tobacco, Alcohol, Gaming, emissions does a baseball team have to fly to Asia for a couple games, taper technology, fast food, taper people older than a certain age, taper paper, taper trips to mars, taper space junk. Taper our freedoms. I had hoped on this but the label changes on RX opiates is not going to help it’s going to make it worse in a way because it’s not outlining existing ongoing intractable problems because it’s still all about tapering. How about fake medication that you pay good money for , that’s right picked up migraine medication and capsules are half filled with pure aspirin that hurt my stomach so bad I missed work curled up for 3 days. I still have the capsules but I don’t know what to do with them because of fear that it might make the great taper of the 21st century worse. The crisis is people stuck in the bed and can’t walk or double amputees. It’s nice to see addict injection centers getting top priority to get high but people going to work are getting tapered. Pain Management was doing very 11 years ago and now it’s being tapered apart, the whole system is being tapered into uncharted territory. People are so confused now.

Sherry

Spinal Stenosis DDD, cervical lamectomony, arthritis, bone spurs, severe migraines ; waiting on MRI results lumbar.

Sherry

Also I have zero life otherwise. No social, only go to work need help with anything else even shopping.

Sherry

I can only speak for myself on the mental health aspect. Many of us I know, however have gone all routes for help. We can make no other progress unless our physical pain is at least tolerable. Antidepressants have zero effect on any of my issues except to use for sleep such as Trazadone. I couldn’t work without my pain medicine, period. Many days I don’t know how I’m still going; lots of appointments and more time off for “sick” using annual leave for too high pain days. No vacation or days off just because in about 15 years. We all don’t have enough relief as it is. Please don’t cut us more. I Know I dont seek more or even ask, I don’t allow myself to run out and sure dont have extra. I keep my meds on me to avoid anyone getting into them. I’m very careful and no issues with my tests except when they were using a lab that a lot of their patients showed up negative. My provider knew I was wearing my butrans patch but also require 2 to 3 (2 1/2) pills a day . I feel no buzz, high nothing and hurt but am sure it would be not tolerable without.
I would only say more about the topic regarding thoughts/actions annonomusly but Im sure most of us have had at least ideation at times.

Anne Guthrie

Lisa, it is not, NOT just because of addicts! That is one reason some ADDICTS do give up! I am a recovering ADDICT. I had a spinal fusion 99, were basically a full body cast for 6 months. I am a welder and it was mostly from my occupation. I had never abused medication, bought illegal drugs etc. I had prescriptions in my medicine cabinet of pain pills that I hardly touched before my surgeries. I did become addicted to my medication. The main reason because it was the doctors first response. I am the one who begged him to let me try any alternatives, epidurals, blocks, tens unit, physical therapy etc. I was able to manage the pain after my surgery, mostly without narcotics, for 5 years after the surgery. Eventually I had 2 go to pain management because i could barely even work or take care of my children. Again, pain pills was there answer.
So saying this is because of addicts, is not true.
I am in pain always, it’s something iv come to accept because i lost my job and have no insurance. I would give anything to be able to receive treatment, especially other then narcotics, shots, pain pump etc. But i have no choice.
It is NOT just because of addicts, who for the majority, DID NOT CHOOSE TO BE ONE!
I was not an addict searching for drugs when my problems started. Exact opposite. I was made one because my doctors immediate response was pushing pain medications! The quickest for him, that has almost killed me.
I wish the best for you.

Susan

I agree that we need physicians who treat the body as a whole. I have found that it is just as confusing to physicians as it is to the patients. Someone with a condition that affects multiple systems can easily become so frustrated with going to multiple physicians, they just give up and accept whatever they can get for pain. It’s has occurred to me that when a patient is referred to another physician, their care loses something in the process because you’ve got HIPPA, and other legal issues. Patient’s lose control over who know what about them. We over charge for blood work because every doctor wants one, we have to have a Dexa scan, then when a mistake is made a marinade of charges hit the insurance companies. We are over charging insurance companies because conversation didnt take place with other physicians because we have robbed the patient and the physician of their rights.

Krae

I too struggle with chronic pain for so many years I cared for first my Mom until she died and then my father was he grew old and I dealt with his pain along with my own strange how they were cared for anything they needed they got. My last pain management appt. I was once again not seem for my pain but for a magic number to satisfy the state government and federal government that pretend to know me and how much pain I’m “allowed” to have on any given day. I now live my life between what I want to do and the fear of how much pain I might have and not doing what I want because I won’t be able to control the pain of I hurt myself.Do what I would like? That is a thing of the past now getting through a day at a time is reality now. People taking their lives because of their pain, my life has already been taken by someone I don’t even know. I just wonder if they cry themselves to sleep every night because another day has lasted and they didn’t get to live it they way they wanted I hope someone has a straggle hold on them too every waking moment. Why didn’t anyone even bother to ask how this would affect people that truly have pain and just want somewhat of a normal life that were never out looking to get high or profit from their medications all I wanted to do was function like a normal person seems they just want to disable good people that have a lot to give it makes me very sad!

Ora Prater

Thank God someone is giving us a voice. I have suffered over 20 yrs.with chronic pain. I now have a Dr.that will help me. I have had to go from dr to dr to find someone to help me.My family Dr. won’t try to help me he is afraid to lose his license if he gives me pain meds so I have to pay a pain dr to get my meds .life is no good when you are in constant pain . Someone please help

Hi Billie I hate to say it but I know how you feel. I am a chronic pain person too.Right now I am without nerve blocks since Nov.2018, without pain meds since Mar.4th. 2019. Doc took my meds. He is trying to blame me for his neglect. After I filed a grievance against him he tried to make it look like it was my fault that he took my meds. I went through the Physician Complaint Line at the hospital who turned it over to Patient Relations who made a mess of it and then said they stand behind their doc and give him free rein in whatever he does to patients in the clinic. I am filing with the State Licensing Board against this doc and they will know all the gory details of my case. On April 10th. I underwent a surgery to have the nerve removed from my abdomen to help my pain, it is not working. I see surgeon on Apr.25th. for checkup. While at Same Day Surgery to have surgery done I had strange things said to me.– As I was adjusting the head of the bed a nurse said to another one “Princess!”; Was asked by anesthesiologist what I like to do; As I was going to sleep I heard anesthesiologist tell his helper that “chronic pain patients learn how to push their pain down, that they can stand more pain than we can and that we can fight the meds they give us”(for surgery); in the recovery room I was told they are allowed to give me three shots of ” really strong” Dilaudid for my pain, that they can`t take all my pain away but can take the edge off and then was asked how many I thought I would need to take my pain away:( ended up getting two of the shots since I was not allowed to have all my pain controlled); they made sure I understood I was going home even before I had my surgery.–My blood pressure was in the triple digits in the recovery room and even when I was sent home. It goes to triple digits a lot lately. I hurt so bad right now. I have often thought it would be better to be dead.Will enjoy filing on this doc. Hang in there Billie, am praying for you. Do not give up.

Jeanette French

NO TRUER WORDS HAVE BEEN SPOKEN ABOUT HEALTHCARE TODAY- WE NEED TO GO BACK TO SEEING THE BODY AS A WHOLE AND NOT AS PARTS. IN OTHER WORDS NOT SPECIALISTS BUT THOSE WHO TREAT THE BODY AS A WHOLE WITH SPECIALISTS .

Lisa

Cont…..
So after my doctor told me what to expect in regards to withdrawls he then stated that this is basically what’s called a “forced reduction” and that he will see me again in 3 weeks and we will revisit at that time whether to put me back on oxycodone. He has been reducing me over the past 6 months 5 pills a month and has been pushing me hard to consider a pain pump or another trial on the spinal cord stimulator as he is trying to get away from prescribing pills all because of the new “suggestions” from the CDC and admitted a bit of concern for his license. So he is looking at my having my pills stolen as a good thing and it will show how I do without them. This is a doctor I’ve been with for 12 years and I just couldn’t believe what he was telling me.

Since given not taken any pain medication other than my long acting tramadol I have not experienced any withdrawl symptoms but the amount of pain I am in is just unbearable and nobody should ever have to live a second like this. I honestly didnt know how well my oxycodone was working until not having them. I have not slept in my bed for 4 days because I cant get up or down the stairs, I haven’t cooked or eaten much because that means standing and moving and sleeping is a few hours here and there. I had to have my husband wash and dry my hair and I’ve been taking sponge baths. It’s just too much and to know I still have 3 weeks to go and even then he said he will “revisit putting me back on the oxycodone ” terrifies me. Should he decide not to, there is just no way I can live like this. This is no way to live at all and I just cant do it much longer. I can try to find another doctor but with the opioid epidemic many doctors here in Virginia fear or just wont prescribe pain medication anymore no matter what is wrong with you. I shouldn’t have to suffer like this because of addicts. Something needs to change and change yesterday before more people like myself get pushed to end it.

Lisa

I didnt understand most of the post or what it meant but what I could relate to was the word “suicide” 100%. I’m at a point where I have given up basically. My husband just asked me the other day why I haven’t been to have my mammogram in 3 years or why I haven’t seen my PCP in 4 years, why I haven’t gotten my heart medication refilled in a year and my response was “I’ve given up”.
I’m so ashamed and embarrassed to admit this but for the first time in 13 years of taking pain medication, I made a huge mistake and ended up getting 3 of my medications stolen, one being my pain medication. They didnt get the 6 I had in a smaller travel bottle but did get away with 70 of them. I filed a police report, they dusted for fingerprints and reviewed security footage but came up with just my fingerprints and my husband’s and the security cameras of where I was were not working and hadnt been for 2 months.

I initially messaged my doctor to inform him what happened and didnt hear back from him for 2 days, so I scheduled an appt the following day. I knew nothing could be done and wasnt going in expecting anything, I went to see him to find out what I need to do and discuss my long acting that I was having issues with my insurance company with.
We talked about my medications being stolen which was my Lyrica, my nitroglycerin and my oxycodone. He asked how many I had left and I explained the 6 they didnt get. He said unfortunately your going to have to make those 6 last……the next 3.5 weeks!!!! He then kindly explained what I can expect should I go into withdrawal but stated that my long acting tramadol should ease some of the withdrawls. Mind you I’ve been taking tramadol since 2001 for my fibromyalgia which it still works wonders for, but does NOT work at all for my lumbar spinal pain (from 4 spinal surgeries), my neck pain from DDD and bulging discs or my osteoporosis. I also have a very fast metabolism so the extended release doesnt last anywhere near 12hrs

Paula

Infinite thanks to dr lewis for spearheading this movement. It’s exactly what someone had to do

Dave Brooks

Thank you for studying the healthcare situations that chronic pain folks are having to deal with.

One thing I want to say is there are many healthcare providers and unfortunately doctors trying to capitalize on people who have no choice but to pay through the nose or decide to end their misery by ending their life for one reason or another.

The thought has crossed my mind more than once.

I keep going knowing my children always tell me they love me when I have a chance to talk to them… Always!!!

I have 4 wonderful boys and wife that still loves me or at least puts up with me even after 34 years.

I married her straight out of high school and have never been sorry. She is and has been my sweetie since she was 17. Met rollerskating… And she could skate. At once upon a time so could i; in fact we still have our rollerskatings, I used to be a backward speed skater and competitive in state competitions. Placed 3rd in the state… My wife won’t allow me to skate anymore. Can’t take the risk of falling… Too much hardware in my neck and low back. Degeneration of disks. Sucks to be like this, but still hanging in here because I love my boys And now I am a grandfather… Oh JOY!!!

Dave Brooks

BethAnn Shoenfeld

Dear Ed,
I am indirectly responding to this Article. Patients are also being unsafely taken off of Benzodiazepines. I am not able to say more about it now. This is a terrifying time for many people.

I can’t fathom how so many supposedly smart people can be so cruel. I have chronic pain, intractible, chronic tendinosis and tendinitis from an FDA approved defective drug levaquin. The government caused my and others disabiity. My pain is horrible. It was fairly well controlled with 10 mg. methadone 4 times a day. I’ve self tapered to 3 times a day and someitmes both of my legs are in great pain. I have confirmed with skin biopsies small fiber neuropathy. It’s like a sharp electric current running through my legs when the medicine is reduced. This is NOT due to withdrawal. It is the PAIN from my injuries. If I do not have at least 10 mg. methadone for pain 3 times a day I doubt I will last long. Period. End of story. That’s the truth. I spent my entire life helping people as a teacher, and as an executive for the New York Blood Center making sure patients had blood for their cancer or accidents. What do I get for a life of public service? Compassionate care or torturous pain. Which is it CDC and FDA? What do we all pay taxes for? You never know when a bus is going to hit you.

Thomas Wayne Kidd

I am not able to cook or take care of myself neither is my wife. We are in deep trouble.

Thomas Wayne Kidd

What if anything is being done about our rights under the Americans with Disabilities act. Millions have had their rights violated. As are ignored and mistreated every time were go to our appointments. We need answers now.

Terri James

Dear God In Heaven,
You see Billie McCurdy. You see what this man is going through. Please Lord I pray that you would help him and give him the miracles he needs to live and thrive. Father I ask that you would please help all of us to do the same. I pray that you will please put your arms around Billie right now, comfort him and give him life as well as the rest of us. Please fix this Injustice they’ve created. Please forgive us for our anger towards those that have done so much harm to us for no reason whatsoever. Dear Lord, send us relief, wisdom and the strength to handle it. These things I ask in Jesus Most Holy Name. Amen

Janice Lacerenza

Thank you Ed for all you are doing on our behalf. After exhausting every avail surgeries, procedures I was blessed w/controlled opiate Pain Mgmt; As a 20yr legitimate Chronic Pain Patient as well, now being victimized & having my life turned upside down. I don’t abuse my meds; each day out of a wheelchair finally 20 yrs ago I’ve blessed my meds w/every step I’ve taken…
Until now where my dose abruptly cut in half & back to square one miserable!
What u must bring to light also is the yr’s leading up to our acceptance as a CP PATIENT! All the Dr’s, opinions, tests, surgeries…like a guinea pig! Yet now we are forgotten.

Ali

The powers that be are responsible for the suicides, harassment, bullying, and being left without any resources for chronic pain patients. We are there collateral damage. This will go down in history as a grave error on there part not following “first do no Harm”.
The powers that be will continue there lives doing normal business and loose nothing. Chronic pain patients have lost there lives and resources that will never be able to replace as before.
I am a chronic pain patient and an RN. This is a tragic travesty that has ruined, debased, bullied, shamed, and left with no resources to help with pain.
I am appalled educated people were this negligent in creating with there guidelines this horrific genocide by suicide. Then change guidelines that are evasive, patronizing, and demeaning to those of us that have followed all there guidelines.
I am to the point where the average chronic pain patient can’t afford a lawyer but needs to to place charges of negligence, duedilligence, and genocide by suicide because of the powers that be lack of addressing these issues before “tragic harm was done”. The guidelines changed, physician’s were bullied, hospitals ran scared, and patients died.
How long before the powers that be addressed the loss of lives.
This is tragic. Our country has a history of very tragic medical decisions. Syphilis study, baby formula to third world countries, and radiation of newborn thyroids.
For being a 1st world country our educated leaders have failed horribly.

Walter Strickland

That’s seems to be the way government works / go after the people who follow the law as they don’t seem to be able to stop the bad guys / and sometimes I really wonder how bad they really want to catch or let alone really stop them / us the people who follow the law and really need these medications are EASY targets / so they come after us to get their SUCCESS #’s up to look as though they are doing good !!! Isn’t that pretty much how that as well as other government helping the people works ???

ElizabethR

I hear Lindsey loud and clear. If we patients tell our doctors the truth about our pain and how it really affects us despite our efforts to manage it, we will be punished. Our medication will be cut off or drastically reduced, and we will get a mental health referral. Meditation and twinkling waterfalls have never worked for me. I’d bet that the great majority of the perky 30-40-somethings who lead these sessions have never experienced serious, long-term pain that will never go away. Like Lindsey, I would think twice about having surgery of any kind even if I needed it; I fear that I would not receive adequate treatment for post-surgical pain.

I live in an 82-year-old body for which a twinkling waterfall usually serves as a reminder that a trip to the restroom is in order. Seriously, though, it’s an unfortunate–and potentially dangerous–circumstance when patients cannot be honest and forthright with their physicians. When did punishment become a huge component of healthcare for patients living with pain? Probably about 2016 when “our” government decided to play doctor and address the “opioid crisis” with a one-size-fits-all approach that continues to do a great deal of harm.

I have a self-deliverance plan, too.

I feel all You! We that live this talk the same language.I know it is hard to do things but if you can print out some of the things the national pain report tells, the story’s of us and pass them around or lay them where others will read them so the more we stick together and the more it is known to the people the better we are.The media is starting to show more of our side.This doesn’t have to do with one side of the political party or the other.It has to do with ALL and to make sure no career politician can benefit monetarily from it and really make sure that they are actually doing what they have been elected for.Put the people first! VOTE

Alonzo hodge

If the government was getting billions of dollars in tax revenue from prescription opioids like they are medical marijuana there wouldn’t be a problem.

Dar

I apologize for the grammer errors in my previous post. I ran out of space. This war against people in pain is so serious it gets hard to not get emotional, and grammer is second to the problem. Even so, we want to present ourselves as educated, caring people, and make sure we let them know we know our rights, and are doing all we can to enforce them. The suffering has to stop today, and those people who tried to turn pain patients into criminals should face their own criminal charges right away.

Dar

I do not believe that pain patients are going to get any justice until we fight back with lawsuits. It is about money, as always. The scare tactics used to ‘scare’ the public have been effective, but we should not run and hide. Empathy does not exist in the minds of certain politicians. Obviously they have not experienced the suffering that uncontrolled pain does to a person. Maybe they sould have to personally experience the struggles of pain patients-first hand. Since they are so quick to suggest the strict guidelines on treating pain, they should be required to witnessthe despair first hand. After all they are working for us-the public. It is easy to make false allegations, and get up there on the stage, and preach. Public officials need to prove they are working for the better of all mankind. It is easy keep the money rolling in, while never actually seeing the harm they are causing. It is so sinful to see people, including veterans, suffering outright, when pain meds could easily help. I, for one, have no quality of life anymore, but we must not quit. It is time to enforce guidelines for public officials, so they see what their actions are doing to the public’s well-being. They should be ashamed of denying the soldiers who fought for the rights of themselves, and their families, not to suffer in pain, while hiding behind false facts. Americans sould be scared. Our rights have, and are, being violated. Since these injustices are proven, and doctors and patients alike have been targeted, it is time to stop the injustices immediately. Medicine and politics should not be mixed. We do not let animals suffer without doing all we can to help them, yet people are in agony- personally, medically, socially, and are being tortured, right in front of us. It all comes down to money, and social status. Since it is clear that our civil rights are being violated, things should be corrected without delay. Those who have caused these injustices should pay.

Billie McCurdy

I am suicidal right now. This is due to the change of medication this month. I had a reaction seven years ago to fentanyl and I had to check myself into an institution. The medicine they put me on this month is doing the same thing hallucinations heavy thoughts of Suicide. My body is hurting worse my skin is itching I need to crawl out of my body. I have called the doctor six times and no return calls. I am too weak to ride in the car to the office and demand that they see me. I have thrown up more of the medicine I’ve not been able to keep down even with my nausea medicine. Next month I have an appointment with an endocrinologist so they can check my cyp450 to see why I do not process certain medicines right. And to find out why I test positive for so many diseases but the cross test show negative. The doctor is not listening and I’m really afraid I won’t make it this time. I would stop the drug completely but can’t handle the the withdrawals even though I am going withdrawals now) little medicine I can hold down only helps a little . my blood pressure stays at 210 / 115 even with three blood pressure medications way too high and causes severe chest pains. I have been to the emergency room too many times for this and they know it’s just because of my pain. I cannot go now because then they think you’re just a drug seeker. I will try and fight through this for the next two weeks. The doctor will have to put me back on what I was on even though I tried to do something different at a lower dose. Hydrocodone worked but due to Tylenol I had to stop taking that and they put me on oxycodone it worked when they had the right dose. I cannot take 12 hour release medications because it processes too fast in my body. Now I tried Dilaudid that’s what’s making me very sick.
I’m asking everyone on here to please pray for me to help me get through these next few weeks.
The doctors won’t help . Prayer is the only thing that’s going to help this time. God bless everyone.

Cindy

I have a J.D. — I used to be a lawyer and know how to read sophisticated writing. But I have a very hard time understanding most of this column — and so can’t imagine how people with a high school degree are managing to understand it.

My comprehension isn’t what it used to be, due to my decade of pain and meds, and I do think I’m having some cognitive declined which is being looked into. But it still is well above average.

One thing that did strike me in this column is about Privacy. If I still worked or felt that I’d ever be able to work again, or had insurance that could use certain info against me (thank goodness for Medicare), I don’t know how open I’d be. I doubt I’d have had shared my stories — esp about the day I spent contemplating suicide due to my forced taper — on day 4 of a recent pain spike, I was terrified to take an extra pill or two out of fear I’d run out later. It made no sense since I still had the pills to take to get me thru the day, but I was hysterical and not at all logical and desperate and alone. Fortunately, after hours of this, I finally realized that I could take what I needed to stay alive, and worry about later, later.

As a once frequent visitor to The Hill, I quickly learned that government bureaucrats see everything through politically colored lenses, never through humanitarian ones. Its often very difficult if not impossible to counter the lobbying on$laught from the special interest groups on the other side especially with complex issues as these.

It was crystal clear that those who threw the most time & money at an issue would often win the greatest political favor and thus the battle since I found most government bureaucrats were ignorant when it comes to complex medical issues. That frailty was often exploited by the other side which meant they could be easily manipulated especially if they could be convinced it would win them political points with their constituents back home. It’s that simple!

So, are they ready to listen?… Sure they are!… but in order to play REAL ball in this town we’ll need REAL money to hire a K-Street lobby firm that will get our message to the Hill first rather than rely on self funded advocates and activists that get there way after the other side does. Citizens are often the pawns in the games they play here, but we who live within the pain community know better than to let that happen. We must stop being their political pawns and continue to speak out against the forces that exploit and suppress us for political advantage. We need a voice at the table before dinner is even served!

Therefore the Chronic Pain Community should seriously consider a well funded (Go-Fund-Me) lobbying effort. Sure we’ll punch holes in the system every now and then, but we’ll never be allowed to play any REAL ball. It’s just the way things work here in DC.

One hope is the newly formed American Patient Defense Union founded by a brave thoracic surgeon by the name of Dr. Hooman Noorchashm. Please look him up… read about his wife’s horrific story and you’ll see for yourself that he is currently our best hope to play in the Big Leagues.

Vincent

People are giving up, because when you have been abiding by every rule in a medical specialty setting and have made great progress then in one swoop of guidelines takes it away, and you hurt and can’t take care of yourself like you had been, people start to 2nd guess everything they have worked for. Think about professional athletes if they are retired from injury and age and are being forced tapered off stable medications, Good medication that comes from a poppy plant and then that medication is taken away and then they can’t rest, enjoy family, work, participate with their wife or husband, then that would be obvious to how these people are feeling and not to mention people that cant walk hardly or not at all and the condition is getting worse. The one way to help this is what the FDA and CDC seems to be trying to straighten out but they will need to be loud and clear because the guidelines have backed our doctors in corners and doctors have been trying to abide by these rules and it’s destroying relationships. Please hurry be louder so people can clear their minds. We are all in this together.

Kirk

I amy be a bit ff subject, ut I have ti tajk action and try anything

I am not sure if I should be writing this address as I have gotten it from the NP site to wich I belong. I am going to keep this simple. Pain is subjective as you well know.Here it is:Diabetes Type 1..44 years with encompassing neuropathies5x CABG at age 46 and went on disability.Caudal Block twice for severe back pain..did not workAmpuation of smalll toes ( phantom toe )Severe Staphylococcus aureus Ostyemylitis in CABD incision, 2 years )Resect of CABG wound ro debride staph, nerve damage done by then.Implant of ICDVT just last July 2018Arthritis in fingers and toes and kneesVasculitis.Diabetic Ulcers on feet which trigger neuropathy ( burns like fire )Stage 4 Kidney Disease.Apnea ( very disorganized sleep )Medicare put limits on the only med that works for me and all I would need is ONE, (1) more tab . This is insanity as I tried to get ONE tab under special circumstances. I am NOT opiate naive and I have excellent records across all illnesses. Like some say, this is like a horrible roller coaster ride.to get me thru the day !!. I have written congessmen , Senators (Fl) as well as completed your survey and wrote to FDA,etc. If I did not take an active role in the chronic Pain, I would fall apart quickly.Please Do anything you can as I have been taking opiates for over ten years and NEVER had a proble. My significant other is my best support system. Maybe The CDC should consider that all patients have a suppoert system as opposed toliterally chopping off their life line to living and stay active. I want to be part of the solution to this horribleproblem, not ust print all my woes. I hurt. I have only one doctor who understands Pain Management ( My PMD ). All others don’t understand anything just to cover themselves, i am assuming. Even some of my best Dr’s don’t even want to hear the word Opiate.

David Hickle

Our government isn’t going to listen all they are doing is buying their time covering their ass until they betray the American citizens I don’t trust anyone anymore in the USA or humanity because what ever anyone says is a load of [edit]