Why is the National Pain Report Promoting the Chronic Pain Patient Survey?

Why is the National Pain Report Promoting the Chronic Pain Patient Survey?

We have received many responses from chronic pain patients, providers and friends who wondered why we, at the National Pain Report, are promoting a chronic pain patient survey so much.

One reason is simple: this is the largest sample of chronic pain patients and providers in history. Over 4000 people have already filled out the survey—and we are hoping we can reach 5000 before the end of March. (So please send this to your own networks, post it on Facebook. We need the data.)

Here’s the link the chronic pain survey:

The other answer is even more basic: we want to make a difference.

You will note the original survey was designed to create some data for the FDA…but it has become much more than that.

Now, it’s about getting the voice of the chronic pain patient motivated and heard with federal policy makers, providers, .

If you are wondering what Dr. Terri Lewis, who is a passionate defender of the rights of the chronic pain community, is going to do w/ this data—this is what she told a National Pain Report reader this weekend:

The survey responses are being analyzed and prepared for a number of potential issues and policy audiences. Results will be summarized and prepared in a variety of formats to inform state and federal policy makers across public agencies. I am mapping the data by zip code and publishing drafts on these as maps on my twitter feed @tal7291.

To start I am assembling categorizing feedback on diagnoses, symptoms, pain characterizations; all the things your report that you have tried (worked, didn’t work); barriers to care; pharmacy experiences; insurance issues; treatment experience; step therapy; and suicide. I encourage parents, care partners, spouses and family members in any role; folks in the helping profession to respond.

This project falls into the category of patient-generated research; 80% of you have indicated that you would like to be invited into future research opportunities. People with chronic pain are usually left out of research activities – so I am preparing to place a new project (derived from this one) under an IRB (Institutional Review Board) so that we can really get a deeper dive in your experiences and impact more targeted policy audiences.

I am forever grateful to have your trust as we move this into the public space. If you are involved in regular advocacy and you want information about ongoing survey results for your state, please email me at tal7291@yahoo.com. I will de-identify and provide you with a state snapshot.

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Authored by: Ed Coghlan

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Scott michaels

[edit]
The drug companies need to make a drug that cures addiction. Every addict and alcholic will tell them, some people can do a little coke, heroin boize whatever and save the rest for another day. They can treat the drugs like that forever. Others cant! Theyre the addicts junkies and alcoholics. So punishing pain patients for using thier medicine for pain and taking it as directed is like taking everybodies dri erslucense away because a alcoholic junkie killed ten people in a car accident.
People are killing themselves on a daily basis because of the crippling pain they now have to live with because junkies use dope. NO [edit] LOGUC AT ALL!

Jody Hoffman

I took the time to do the survey and I am not the type of person who does that, but I have a voice as well as chronic pain & if I didn’t fill out the survey I wasn’t going to be heard. I’ve spent 17 months not being heard by my new doctor except for when I told her that I have to go to the street to get relief if she won’t help me. That she heard & responded with I will lose my meds if I did that. Come on people take the time to fill it out or be prepared to never find relief from the chronic pain you are in

dave

@ Schubring Of course you failed to mention Dr Kolodny- an expert. But more importantly, you cant be a judge in defense of other experts- that would be self dealing. It is up to society to judge you and other experts role in the problems with pain care and the opioid debacle.
If you had read the research on pain care and the research on research- as I have done and documented in 125 pages of citations then you can see the great inadequacies of medical research- whether it is questionable p values, methodology, publication bias, harking, participation bias, poor literature reviews, missing data, the Matthew effect, underpowered studies, poor adherence to AMSTAR or PRISMA or CONSORT- forget about Bradford Hill criteria- then it is only too clear that medical research is a white washed tomb. 18000 trials and opioids- have been all too little to settle issues on opioid use- due to the corrupt nature of medical research.
IN addition, researchers failed to establish hypoopioidemia- despite trying. Clueless careless doctors prescribe for pain with no neurotransmitter testing nor neuromodulator testing- this despite their attachment to neurobiologism in pain care rather than the energey crises theory of pain.
Experts in NIH and in universities are profiting greatly from the crises in pain care- I dont see remorse or real reforms – other than adding insult and injury to those in pain- previously your profession was mostly negligent of people in pain- now they are weaponized to make people in pain suffer with forced tapers or unwilling to treat people in pain at all.
Your defense of research and experts smacks of trying to dwarf us nonexperts- how typical of your class to engage in testimonial injustice. Work on your virtue epistemology for your poisonous enthusiasm for poor evidentialism and lack of responsibilism doesnt convince this nonexpert.

Erin Sullivan

how can I take the survey? I am a chronic pain patient . I have Kaiser . All of a sudden they are going to force taper me after 11 years of stability. I am so afraid. It has taken years to get it right. My doctor got in trouble. Noo reason Nothing bad happened EVER. Please help me

Mary

I’ve read most of the comments and while I believe one doesn’t want to be an alarmist, I can tell you that time has come. Primaries cant write, doctors are being criminally investigated after being harrassed. Pharmacies are out of stock, PreCerts required, denied and not covered. No attention paid to the adverse m
edical consequences.
and now I have been dealing with this nonsense for the past 12 years and I just turned 59. I had a CVS pharmacy report my physician to the medical board for overprescribing Actiq ~10 + yrs back. It took the board 15 minutes to review my file with hundreds of objective tests, surgical procedures , reports etc, . It was so obviously justified, they apologized to my Physician.

BC/BS didn’t want to pay for it either so after 2 years use, I went to fill my monthly prescription and they required a PreAuth. I didn’t have 5 days worth while they jerked me around, having to go to hospital.

This has gone on inconsistently until the “opiod epidemic “. I have been using it for years and fortunately have never had an issue of addiction.

I just spent 3.5 months in hospitals and rehabilitation centers. I had crushed my left forearm and calcaneous fractures of right foot, with many complications. I received a 5 day supply of 20mg oxycontin q 8 hours !

I went to my pain specialist who wrote for 30 days. My insurance company charged me $380 saying it wouldn’t pay.

Now this month, none of the pharmacies have any opioids claiming it’s “on back order”. In other words, they have no idea when they will get any in. I’m not able to drive around looking, since they can’t tell you over the phone.

I found one they told me they could order Saturday and I’d have it by today.
Despite it being 5 days later,
they didn’t get it in. I was told that I now need a PreAuth. How can this not be medically negligent? I spent 2 hours on the phone with insurance company,
Medicare and hours wasting by breath will pharmacists.

I’M ON A TEAR NOW

Aldo Ritondale

Here is a typical day in the life of a patient with chronic intractable pain. This happened to me on March 7, 2019, and is a common theme (i.e., the patient gets caught in the middle):

My orthopedist is treating my chronic pain.

He recently cut me drastically to the point where I went to the ER for withdrawal, and now my pain has resurfaced with a vengeance.

He then had a little mercy and slightly increased the breakthrough medicine. I went to a Walgreens pharmacy, they didn’t have the medicine, but they called another Walgreens nearby that had it. I then went to the alternate Walgreens but the pharmacist refused to fill it because my driver’s license is issued by Florida, and my ortho is in New Jersey where I have another home (dual residency).

So, I went back to my ortho, who at first refused to change the address on the script (my NJ address) because he thought Walgreens was being “rediculous”.

I then called Walgreens customer service and they simply said that pharmacists fill prescriptions at their own discretion, which of course I already knew, so that was a wasted call.

The doctor’s office then called me back and said they agreed to write new scripts with my FL address. I then went back to Walgreens and they finally agreed to fill them.

Now, although this is probably a good safeguard against bogus scripting, I had been to other Walgreens, CVS, and other pharmacies in NJ in the past, and although there were all kind of other issues, I had never been refused a prescription fill from the same physician for this particular reason if in fact the pharmacy had the medicine, which is usually not the case.

All of the above took half a day to accomplish, and by the time I was finished, I felt like shutting out the lights because my pain was now beyond control.

This is just a typical day in the life of a chronic pain patient.

marilyn

I do not wish to be an alarmist, & sincerely hope all the good that good people are working towards & trying to accomplish will do just that. However, I had a very interesting conversation with a surgeon of mine that I trust a lot & hope & pray he is either ill informed, or perhaps things will change for us for the better. However, I was told that legal opiates, the ones we all rely on just to get out of our beds every morning are being phased out. That older chronic pain patients, which I am one, 20 years, will be doled out & cut off. Not a state by state thing, but a dea/cdc/fda, whatever other alphabetical agency out there which feels the need to intrude themselves between a doctor/patient. I thought about this before posting, but feel better forewarned than taken totally by surprise. I know I am now making my plans accordingly.

Debbie Nickels Heck, MD

On Twitter I’ve suggested pain patients find Direct Primary Care physicians who are almost all members of the Assn of American Physicians & Surgeons (AAPS) and operate in a cash basis. They aren’t beholden to insurance companies or govt agencies & practice based on the (GASP!) needs of the patients being far more likely to prescribe appropriate pain meds in dosages that actually relieve their pain. You can go to https://www.dpcfrontier.com/mapper/
to find such a physician in your area. They generally charge a monthly fee/person, couple or family which which covers all office visits for the month. Insurance is not taken for visits but can still be used for labs, prescriptions, hospitalization, etc. I recently had someone with multiple health problems who was skeptical see such a Dr and finally get back on the pain control she’d been denied for months. She’s driving a little further for care but no longer suffering.

Theresa Negrete

All of this just makes me cry knowing how many of my fellow human beings are made to suffer and have their dignity ruduced. This all saddens and angers me at the same time. Has anyone else noticed how much money is being made on the suffering that’s been inflicted on Chronic Pain Patients by the Government and the Medical Profession? There’s an endless supply of new fangled gadgets that are going to miraculously take your pain away. Hahahaha! And oh yes, those horrid recovery places that are popping up all over for addicts, that the Medical Community sends their Chronic Pain Patients to. WE’RE NOT ADDICTS! I could go on and on. It’s a waste of time when the people running the show have no emotional attachment to any living thing. It’s about $$$!

The government is more concern with over dose deaths from addicts than they are concern about the suffering they have created that had caused & continue to cause the sucide deaths of the intractable pain people. They haven’t resolved addictions deaths in yet, here it is 4 yrs later. Government keeps after the pain community full force, just destroying lives to the point people have & will commite sucide. Government not winning on either side. When will they relize they cant stop the ones who dont care about them selves (addict) and restore opiate medication to none abusers & save lives of the intractable pain people who want to live not get a high, but be able to function with less pain. Simple concept thats been taken out of context to anyone that uses any form of opiates,any amount into addicts. It’s just like punishing everyone for the few that abuse / addicts. So everyone is guilty until proven innocent. Even when you’ve been proven innocent by urine test, pill counts you’re still guilty have to see Rehabilitation specialist / psychiatrist. Soon-to-be biopsychosocial crap. Just like what they’re trying to do with guns school shootings. Everyone’s guilty so let’s punish everyone for the few that chose to break the law. Our government is so ass backwards now. Politically correct morons.

JOHNNY BROWN

I’m not a cancer patient but if people in late stages of cancer that is in hospice, what is the problem if they become dependent or even addicted, aren’t these people dying? Can’t you just leave them alone , let them have whatever comfort that they can get from medicine ?

Lynne Hall

It truly sickens me that I lay here in bed, forced to taper my opioids down to the government allowance, force to watch commercial after commercial about opioid addiction. Where is the other side?
I have lost my life. I was able to care for myself, visit my grandchildren go on vacations,etc.. Had a surgeon that I saw every 3 months, who sent me for test and examined me. How I am forced to pee in a cup every month before given my government allowed opiods. No examine.
I am a legacy pain patient. I have ARD, Adhensions. I have been suffering since I was 11. I came in with a brief case of info but no one cared. The government states that they have not forced doctors to cut patients meds, but somehow that message hasn’t made it to any doctors I’ve seen.
I did encounter a doctor they brought in to fill I for my doctor who had been absent for two months. He wanted to. Increase my meds saying, it was his option that doctors should help patient elevate pain. But when he came back from the President of the Pain Clinic, he had a shocked look and explained that they could give me something different, but only for three months, then I would have to be sent to a drug rehab program.
So good luck finding a real doctor. Most are now lackies under a doctor that are sent to take test to see patient, mine failed his, then the script is signed by a doctor, you never see. How is this right. How is this care? How can they bill you for a doctor visit if you don’t see a doctor?
I do think of sucide. And if things don’t get better that may be my only out. I hate being in bed, when only two years ago I was active.
I can’t continue to pay people to come do simple things like cleaning my home and making my bed, going to the store for me, with what little money I have left for food. My savings are about gone and I will be forced to start selling my stocks. I’m 56, at this rate I’ll probably have to sell my household belongings.
Where is our Beloved TRUMP in all this?

Susan

The FDA needs to work on the safety of all prescriptions! Their so consumed about my chance of becoming addicted to opiates as a terminal cancer patient. Yet my blood pressure pills over 4 months worth were the batches recalled that we’re contaminated with pure carcogenics over 200x the FDA’s ‘allowed’ amount of a cancer tumor agent. Months later I get very ill and late winter got a new tumor! Now I don’t have long – I’m not treatment eligible! Chemo in 2016 caused sepsis that almost took my life. Irony what I had to turn to for pain illegally ‘marijuana’ made 2 tumors go away confirmed MRI. However they wage war on it. The opiates never caused harm and I need the pains so severe due to getting cancer chemical soaked recalled blood pressure pills firing my cancer back up but they worry about opiates that did no harm! They are already thousands behind on doing inspections on the companies safety which is why all the recalls! They need to do their jobs – help assure the safety of people!!! They are failing miserable! I won’t start on the [edit] in our food they allow that kills us which is banned in other countries for years!

Susan

Don’t be honest about substance abuse of any kind or suicidal thoughts! It will forever be held against you! Recovering addict who used 4 years began use during a divorce when had a wreck/bad back – I went to rehab myself 10 years 4 months clean! I have stage 4 cancer & in 2015 due to guidelines (during cancer recurrence they cold turkey took my pain medication)!! I regret ever being honest when I felt doctors would need to know & was just doing the right thing!

Lynn Marie

Any kind of chronic pain is a curse, a life sentence.
I understand why some people take their lives.
Family support is critical, something I don’t have.
Being sedentary in itself is a punishment, especially for someone who was athletic, raced horses, jet skis, hiked. My life was all about outdoor activities
After working 40 years, saving for retirement, life stopped. Pain is one thing, isolation is another with chronic pain.

Gary Raymond

Witch Hunt 2019! Auto-da-fé. It is not illegal to prescribe, consume, or store medical opioids.
Instead of paying off medical personnel to persecute those in pain, let’s reward people who abuse substances for recreation when they voluntarily taper or utilize rehab. Addiction is not a crime. Neither is pregnancy. Those suffering with chronic pain need sympathy and medical support. Not punishment. My mother used to hit me to make me stop crying. Does that make sense?

J.D.

By the time all the research and forums and meetings are held, discussed, held again, etc…I wonder how many of us will be remaining. I have a feeling there will be many that took the only option that we saw as being left and then that will be whitewashed as some type of mass hysteria or some other garbage.

S. Dixon

Wonderful job you are doing !!! We need to be heard. Thank you for providing a format for us.

I respectfully dissent with Dave’s commentary about “experts”. The reality is much worse than Dave describes it.

For decades the National Institute on Drug Abuse (NIDA) and the National Institute of Mental Health (NIMH) have studied brain biochemistry, both in their own laboratories and at university-owned laboratories where professors work under contract.

Their research has proven conclusively that Morphine is normally present in the human body at all times. One of the university laboratories, at Stanford, even copied the human genes that govern morphine synthesis, into genetically-modified yeast cells and got the yeast cells to make a few micrograms of morphine.

The Government’s actual experts on Morphine proved that it is impossible to be “drug-free”, because all of us normally have Morphine in our bodies.

A group of political players with links to the Obama Administration’s re-election campaign, seized control of an office at the Centers for Disease Control, an agency that had no expertise whatsoever in brain biochemistry, and pretended to the news media that Andrew Kolodny was somehow smarter than the small army of scientists who had researched human morphine synthesis for decades.

The actual problem is that political power players make up fictitious stories and our gullible mass media believe the lies. Journalists who graduate from college with a total ignorance of what science is and how scientists prove things, don’t ask for proof that a claim some conman makes is true, They report the conman’s lies as if they are the words of a true expert, because they’re not educated enough about how to understand the difference between proven facts and guesswork, to ask the right questions.

One key element of science is how repeatable a result is. The research Dr Lewis is doing, will help to prove what we patients already know about pain, by showing patterns in what we experience.

Susan

I completed the survey on behalf of my husband, the one with chronic pain when it was first presented. I complained then (and I will again) that the survey was poorly written. Many of the questions were poorly worded, and nowhere did it address pain management specialists who won’t provide opiates. Simply asking if one “has access to a pain management” provider isn’t enough.

Oh well. There’s always physician-assisted suicide, right? 😡

Rosalind Rivera

I am completely and totally in favor of this survey as well as any and all lawful suits against those agencies that are the the deciding people involved in the erroneous opinions as to how chronic pain suffered should be treated. Once again I vehemently state that decisions on pain management should be in the hands of qualified health professionals such as Pain Management Doctors! I cannot stress this enough. This past week on my monthly appointment to my pain management doctor my pain medications were once again reduced not only in the dosages but also in the strength of my medications! It’s totally unacceptable as I am already having trouble getting out of bed in the morning. I am also spending nearly the entire day in bed as it is too difficult to go about doing anything anymore! I pray that lawmakers come to their senses and realize the harm that they are doing to others. This is totally and completely unacceptable

Rosalind Rivera
Lucerne Valley, Ca.

Thomas Kidd

What do you chronic pain sufferers think wearing a small sign that says; “I AM NOT A CRIMINAL, I AM PROTECTED UNDER THE AMERICANS WITH DISABILITIES ACT” to your next Pain Clinic appointment and when you go to fill your prescriptions at your Pharmacy????

dave

Its tragic that our government and medicine fails to do a needs survey on a continuous basis to assess the needs of people in pain and ensure that their right to be heard and respected is honored. The harsh disempathetic, anti-individualism and anti- democracy of experts and government in our institutions- their soft moral underbellies is affirmed by Terri’s survey.
Experts moral indifferentism and moral midgetry is at the heart of our poor pain care system. They do not and will not accept responsibility for their moral, social and political failures and despicably they profit off their failures by claiming more and more meetings- more resume builders and more research- which they profit from are needed. It is only clear this strategy of aggravates their store and has lead to a continuing escalation of failure in pain care.
So more and more activity from people in pain is needed- at a time they have been made weaker and more burdened by experts who don’t deserve the title. They belong in 1950’s b rated science fiction flick- the blob, the experts that ate your brain, And that is why they belong in my cartoons.
Make yourselves sheep and the wolves will eat you. Don’t let experts make us sheep- let us call them out as wolves lacking in compassion and respect. The experts lack much expertise in the first place. They lack intellectual virtues-that is why when I submitted 120 pages of citations from medical research on the failings of research- the PMTF not only didn’t publish my comment- but violated the law by denying 2 foi requests on such.
People in pain are increasingly aware and mobilized over experts great failure to serve people in pain and promote moral social and political progress in pain care. The focus on the logic and evidence regarding opioids and other pain treatments is important- but not as important as the failures of scientism, methodologism, theoreticism, scientific realism and the anti-democratic institutions that promote such poor evidentialism

Michael Recchia

The current pain patient environment can be summed up in one word: SUICIDE.

Forced tapers are causing previously controlled pain to resurface, and patients have only 3 alternatives (1) Medical THC and CBD (2) Street opiates (3) Suicide.

(1’) is NOT a good alternative for many, causing paranoia, severe tiredness, and other mental issues.

(2) Street drugs are very risky, often leading to overdose and these are IN FACT the very reason for the so-called “opioid crisis”, of which the pain patient is suffering the government over reach.

(3) Suicide is now often the best alternative rather than living in misery.

If was force tapered from 75mcg Fentanyl Transdermal patch to 10mg Oxycontin and from 30mg Oxycodone to 10mg Percocet and I am going through a horrible withdrawal. My spine orthopedist is doing my pain management and he now refuses to take my calls. I went to my primary care doctor for help, asking him to find a pain management physician for me and treat my withdrawal, but he simply told me in the end to reach out to my orthopedist, who won’t return my calls.

It is a literal nightmare and I am ready to end it.