Worried About the Opioid Crackdown? Tell Your Pain Story

Worried About the Opioid Crackdown? Tell Your Pain Story

By Ed Coghlan.

The Trump Administration has not made hearing the stories of chronic pain patients who are using opioids a big part of the conversation of what they call the “opioid crisis”.

But they are giving people a chance to say something.

They’ve launched a website…www.crisisnextdoor.gov…and asking Americans to share their story by uploading a video about how you “overcame addiction, volunteered at a recovery center or worked as a family to help a loved one get on the path to recovery.

They are calling the opioid addiction issue as the “crisis next door” (hence the url for the website).

The website features among others former Fox News Host Eric Bolling who lost his son to opioid overdose and former New York Mets slugger Darryl Strawberry who famously fought addiction during his long major league career.

But chronic pain advocates, like Dr. Terri Lewis, think this is an opportunity to share the “other side” of the story—which is the impact that reduced opioids are having on the chronic pain population.

Let us suggest you take a look at the videos already on the site to get an idea of what to do.

But here are some tips on how to organize and present your thoughts:

  1. Who Am I?”: Use your name and city and in one sentence describe your or your loved one’s pain condition.
  2. “There Are a Lot of Us”: Share that you are one of millions (maybe a hundred million Americans) who suffer from chronic pain.
  3. “We Aren’t All Addicts”: In one sentence (or two) describe how you have been using pain medication to combat your pain condition—and how it helps you (work, keep with family obligations etc)
  4. Don’t Forget the Chronic Pain Patient”: Make your pitch—concisely and politely—about making sure the discussion about opioids is expanded to include the millions of chronic pain patients who use opioids responsibly.
  5. “Do More for the Pain Patient”: It might be worth making a final pitch for more research and education by the federal government on chronic pain.

The whole video shouldn’t run much more than two-to-three minutes.

Here’s a link to the website. Go to the upper right hand corner where it says “Share My Story”

Let us know if you do it.

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Authored by: Ed Coghlan

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21 Comments on "Worried About the Opioid Crackdown? Tell Your Pain Story"

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I think someone like a major pain support group, or major anybody, should launch its own website and have pain patients send in their stories to that Web page. Get it nationally recognized and get our stories heard that way. It’s the only way our stories will be guaranteed to be heard and seen.

I submitted a video, but they all go to moderation before they’re posted. I didn’t hold back, and I made reference to the multitude of chronic pain patients in America who no longer have access to the only thing that works for them: opiates.

I went on the Crisis next door it looks like only Addicts! One wife who lost her husband said he was addicted after 1 day to opiods from minor surgery & went on to say he put 5 mortgages on the house etc etc & he died & she lives with the her Mom ?REALLY drug addict to the inth degree liars to the inth degree! Besides all that my tablet wont upload anything right now, but James Thorne, James Perry should post on that site plus what Hayden said about having six + substances in their body at a time. William Manjiano 2 nd definitely represents some of what is happening,but Trump put that stupid Patrick Kennedy on the Opiod commission who is anti opiods & us because he & Neut Gingrich use their post to sell anti opiod addiction patches made by a NON DISCLOSED Manufactuer they have stock in. This is all one sided. Yes we need to get our story Videos at that level. All about the Money & power!

I would like to see if the shoe was on the other foot or had to watch their wife, husband, or even worse their child suffer everyday to something you can not control but have no choice but to be along for the ride that never let’s you off. One of Mother Nature’s cruel jokes right but the difference is we have to live on that cruel ride and can’t get off as much as we fight to get off this is a ride you’ll ride the rest of your natural born life. But hey what would y’all know anything about pure pain everyday and I mean everyday. Maybe it I could take all of you on my ride for about five minutes you would beg like hell to get off.

This is really all about Greed and money. In 2014 just the pain meds cost over $600Billion. The insurance companies were complaining. The DEA wanted to do something but Obamas administration was holding them back. It was thought that Friedens CDC guidelines which had no force of law would reduce prescribing. Then Trump comes along and reverses everything Obama and turns the DEA loose. Suddenly they are acting like Nazis shutting down well meaning pain mds all over the country with the blessing of state medical boards. The whole thing is a conspiracy designed to deprive 10s of millions of chronic pain pts and disabled including disable veterans of their pain meds. They will wither and die prematurely and many will suicide and the gov will save over a $ trillion plus per year in social program costs and insurance companys will have a windfall. This is a bipartisan war on pain pts. They have Weaponized the word Opiate and vilified anyone who needs them to have a quality life due to health issues. The government has made a huge PG campaign obfuscating the facts. They don’t want to hear the facts. They just want to murder 10s of millions of people to save over a $trillion plus a yr that they will pocket much of. Funny how corrupt politicians come to think of taxpayers money as their own when they are stealing it. This will end in a Holocaust unheard of in America. And Congress, Trump and the medical establishment are all complicit in it. They are murdering the most vulnerable and weak people in America in a cynical callous sadistic regressive policy designed to make them money. This isn’t about ideology at all. It is all about Greed and Power and a President and Congress that doesn’t care about who or how many it hurts to further its corrupt goals to line it’s pockets and make its fiscal irresponsibility look less apparent. They are doing their best politically to keep our side of this story from being reported. They are trying to make it look like the overdoses in America can legitimately be placed at the feet of prescription opiates. But, really, fentanyl analogs, like carfentanyl posing as heroin are the real problem. Prescription opiates are still the most effective and safest alternative to treat intractable pain. And the congress is fully aware of that. They do not want to hear the facts. They know they are going about this in the worst way to help people. If they wanted to do the right thing they would be going after the fentanyl analogs.

I am an opioid refugee since my pain md of 15 yrs was forced to stop prescribing more than 110 morphine eq in Sept 2017. She referred me to another pain md who turned out to be an insurance fraud specialist when my insurance co informed me he was billing 20X per office visit what my first md had been charging. So i fired him and weaned myself off opiates and tried but was unable to find any pain mds who didn’t either plan to put me on methadone or stick needles and tube(malpractice) and pump me with steroids and locals. So I decided Tn was just too hostile to pain pts and started planning to move.
THis entire fiasco began back in 2015 when Tom FriedenMD was directed to punish Purdue and its distributor McKassen for being too greedy and successful. He stacked a committee with mds who he knew had conflicts of interest $ to find against opioids( interventional anesthesiologists and addiction treatment specialists). They frankly lied about the literature. They said there was no evidence that long term use of opioids was effective or helpful. If you could find a significant number of people who had been on opiates for 10 yrs to say that they weren’t helped, I would give you a million dollars. They are greedy mds. They wanted to see opiates go down so their practices would expand exponentially and they lied and defrauded the CDC and the American public. Happily. Frieden was happy too. He published. There were many letters of protest because the pain societies and pain management mds were blind sided. But the fix was in. States adapted the farce as if it made sense. They made the guidelines to be law. And invited the DEA to begin shutting down clinics with a few pts with pill numbers above their absurd guidelines that set back pain management by 50 years. The clinics pts fled to other clinics and soon their pill numbers were high so they too were shut down and soon there were millions of opiate refugees with nowhere to go in agony of withdrawal. Many of these have lost all quality of life. I have. I am relegated to laying on my couch. Doing my best not to make the pain any worse. If I walk I pay a high price. My feet and legs swell and hurt much worse then. And I am in constant pain whether or not I walk. I cannot sleep more than 3-4 hrs even with prescribed sleep meds.I have lost over 50 lbs. THere is an array of complications resulting from intractable constant pain. I can tell that this is very bad for me. But my government has betrayed me and 10s of millions

I’m REALLY curious about the comment where an open letter was written to Claire McCaskill. WHY? She LIED about opioid stats, stating the US has 5% of the population but consumes 80% of the world’s opioids (and it’s been repeated ad nauseum on the internet, it seems mostly by journalists and politicians). Actually, at that time we had “access” to 30% of the world’s opioids but once you take into account DEA take-backs, confiscations, seizures, private disposal, personal disposal, unused prescriptions, and DEA incinerations are done, etc… that number is even lower than 30%, esp now with all the DEA mandatory cut-backs in production.

for 2 years im sure my wife had RMSF Dr’s had no clue. they blamed her symptoms on her TBI and PTSD and the funniest one MENOPAUSE. she had a Rash on hands and feet that spead under her Breast and Genitals,with Hot Flashes and Delusions with Slurred Peach. in June of 2017 i Diagnosed her with RMSF. i begged and begged for them to test her for 3 weeks.finally got appointment and NURSE said she don’t have it. i said run the test.Nurse said ok ill run the test but i tell you she don’t have it. after the test came back positive is where everything went south. her back went out and i took her to our CHIROPRACTORS to find a bulged disc in her back. i called and called for an appointment and was told her next appointment was in 15-20 https://t.co/VvYTK7KR4k i asked for her pain meds to be Adjusted for her pain till then. Nurse said no! not without being seen by the Dr. so i asked for a earlier Appointment. and the Nurse said no she isn’t due for one yet. so after 2 more weeks Nurse said we could come in as a walk in and IF the Dr. had time she will see her. so we tried that and my wife couldn’t sit that long so we left. then 1 week later we went back. saw the Nurse and she said they don’t do X-RAY’s we would have to go to LITTLE ROCK to the VA ER over 50 miles away or goto BAPTIST HEALTH HOSPITAL only 1 mile away. so no braner right. we went to BHH and got the X-RAY’s. and the Dr. Called us back and did a PHYSICAL and DIAGNOST her with UNKNOWN BACK PAIN. i told them she had 1 or 2 Bulged Disc in her back and needs a MRI. Dr said she could use one from 2015 no need for a new one. i begged for 3 more weeks for her pain meds to be adjusted and a new MRI. Finally we got the MRI and the Dr. said she saw 1 difference in it but nothing that shows a BULGED DISC. we kept trying to get het pain meds adjusted for 2 more weeks. then we had a NEROSURGEN appointment. 2 weeks later my wife had the EPIDURAL SHOT that lasted 1 1/2 day’s. and after 3 trips to BHH and 2 more weeks she had back surgery on her L4 and L5 then 1 week later Dr called and CUT HER PAIN MEDS OFF COMPLETELY for going outside the VA for meds. and accused me of just wanting NARCOTICS and called her an ADDICT. and every time i called 911 i called the VA Clinic to let them know. i started blowing up their phone in June of 2017 and i haven’t stopped since. now its march 5 2018 and still no pain meds.

Our videos are not being aired, only the ones they ask for. Such a shame.

I’m confused… doesn’t the above say these videos are to be from recovered addicts, family etc?? Why would we the CP community send a video?
Please clarify. Thank you.

There is a pain rally nationwide April 7th called “DON’T PUNISH THE PAIN” you can join their group on Facebook.

We need a champion. I tried to contact Elijah Cummings, congressman from Maryland. He has been standing up for people’s rights for decades. Maybe we could write an open letter to him like we did Clare McKaskill. We need help before it’s too late.

As much as I wish we had a place for our stories to be heard this is not the one. The posts will he screened and we will be deleted. They are looking for stories about how drugs have RUINED a life, not how they have SAVED ours.

I wrote an email and sent it to the email suggested on White House website and several days later got a return email from them thanking me and telling me they were forwarding it to the proper department. I am thinking about sending it numerous more times

My name is Gail, I’m 52 yr old f. I suffer from what my dr calls intractable chronic pain. I have Degenerative disk disease, diffused osteoporosis, spinal stenosis, spondylitis, I have had fusions, rods and screws put in and taken back out because they came loose, surgeon said it was from the bone loss. I’ve had 3 failed back surgeries. With those conditions comes lots of pain , from severe back aches to nerve pain from my back thru my hips down my bottom straight down to my feet, I have burning pain, some times it feels like needles sticking in me, I can’t sleep more then an hour at a time because no matter how I lay it worsens my pain majorly. Last yr at this time my drs treated me well, my pain was a concern to them, 2 of them told me and my husband that opiate pain medication would be part of my every day for the rest of my life, which we pretty much figured that since I’ve had almost every kind of treatment I could have for these conditions, and none worked. now I have had all time released morphine taken away because the guidelines say only one opiate pain med should be prescribed and the total mg I was taken was way higher then the cdc guidelines, I have been on that dose for at least 3 yrs with no problems, I was able to live a little, I was able to sleep, to clean my house, I was cooking for my family, with my meds cut back I do none of the things I mentioned, I watch tv and cry. The only thing that works for my pain is high dose opiates, and I really hope people start seeing chronic pain patients are just as important as these people who choose to buy street drugs and don’t know what they are getting then they die! It bothers me to think someone who chooses to take drugs from the streets is more important then patients that follow all the rules to get their medication that helps them live with less pain. Please help chronic pain patients.

Why does it HAVE TO BE A VIDEO????

I have no way to make a video but I have a valid compelling story. So why isn’t the written word just as good?

I have an 8 level fusion/laminectomy with a rod going through it. A 3 level in my lower spine as well. This will never NOT be heavy and painful no matter what I do. How do I communicate this?

Pain rally this Saturday, April 7th. 11am EST, nationwide- all capitols.
Don’t punish pain patients!!

William Mangino
3 mins ·

I was arrested in 2004 and went to trial in July of 2007 by jury. I was convicted on July 5, 2007 and sentenced to 8 and 1/2 to 20 years in prison. I served 102 months and was paroled to Philadelphia…where I am currently applying for re-instatement of my medical license which was “suspended” for 10 years.
I continue to appeal my convictions.
What is important for pain patients to understand, is that unless my conviction is overturned in the courts…then any “single” prescription for an opioid can be prosecuted and convicted: as a means of enabling states or federal agencies to “halt” the prescribing of opioid pain medications — given that the crux of the Commonwealth’s theory of my case was that since I refused ( chose ) to take patients “off” of opioids that they had already been taking from seeing “other” doctors…for years prior to my evaluating and treating them…then — I must have been a criminal. This is precisely the main message conveyed to jurors, based on Commonwealth’s medical expert ( Doctor David Evanko ) having stated in response to prosecution’s questions to him during his testimony about “why” my prescribing was ‘below a standard’ employed by “every other” segment of doctors in this country who treat pain with controlled substances.
During his answering of those questions, Doctor Evanko told jurors that if I had “documented” the reasons why I prescribed, according to The Opioid Prescribing Guidelines of The Pennsylvania State Board of Medicine, or The World Health Organization…then we would ‘not be in court.’ ( paraphrased, but an accurate portrayal of his testimony ). Doctor Evanko never said I prescribed too many pills or that my dosages were too high…although there was an implication that my not “documenting” meant that “patients did not need the medications.”
Six years after trial, and after my own charts were provided to Doctor Evanko for review…he “recanted” his trial testimony, by stating that if he had seen my charts before trial…it would have been his testimony that my prescribing was “generally recognized and accepted.”
Rough draft interview notes of me telling investigators that I refused to prescribe to persons I thought “did not need” medications, were destroyed; so that state agents could tell jurors that I said patients did not need medications. Commonwealth never disclosed to jurors that a patient who testified at trial in 2007, had pled guilty to receiving stolen goods…and was

I began calling, writing, and e-mailing just before the start of 2017 when I learned through my doctor that “new rules” were coming involving my medication prescribing. I NEVER expected the medical “experts” to make life so hard on so many. So hard on so many even after doctors and patients argue the point that not all patients divert or abuse their personal medication. Like all other responsible patients, all I heard or read in return of my communications included the term “opioid crisis”. NEVER a word from the elect or appointed health care experts asking me to “tell me more” about the hardship reducing my personal medication by 80 percent after 23 years of continued benefit including the ability to reamin self sufficient through work that is so important if the patient is able to do so.

I lost a brother 14 years ago to drug overdose. I do understand how it was so unneccessary but, I never once blamed “opioid medication’. Not then, not now. It seems that we are losing something in the declared “opioid crisis”. Our elect and appointed all seem to jump on the “opioid crisis” train and NEVER take the time or care, to have some of their staff even investigate the possibility that maybe, just maybe a new “policy”,” guideline” or even a new law might not be accomplisihing the intended, stated goal or possibly even harming people that should not be blamed for a new law or policy in the first place. People testimony, when a new policy or law iaffecting so many, so badly must be addressed when many who have committed no crime are affected to the point of suicide consideration and the actual act.

This website, “crisis next door” is an opportunity for patients to express the reality of how badly this new “policy” for opioid prescribing physicians is affecting us. I will use this opportunity to express fact, not opinion of how the CDC “policy” has affected me and my family personally and I encourage all patients that medically need and should get pain management relief to express their own truths. Many very responsible physicians and patients have been deemed guilty of being the driving force behind drug overdose. The fact of the victim having an average of six, that’s 6 different substances (including legal alcohol) in their body at the time of their demise does not seem to have an effect on government policy. Many facts, negative issues happenning to longtime patients are being disregarded. Here is a chance to help ourselves. Thank you ED and Terry.

I honestly don’t think they are going to let us post our videos. I have hEDS, stressed due to waiting for an appointment to rule out vEDS and also have 34 other health conditions. I saw this, listened to Trump’s message and was ready to get my face ready for the camera. Until I went to the “Share Your Story” link and read that all videos are screened. I watched video after video, with not one person saying anything this article wants us to do. Authors fault? No. I just have this gut feeling, they won’t let our stories be shown, however, it’s still on the agenda for me today. I pray I am wrong because it’s a sad day when, once again, “all” who have been put through the trenches, won’t get their say. “All” is in Trump’s message. I just feel it won’t be. I will try and will never stop fighting this. I am just saying my true thoughts on it.

I just shared my story, not a gem of a video but I got my point across. Everyone reading this HAS to make a video to bring attention to our plight, raise awareness, be heard, stand up for your rights! We need to start a movement. Today is phase 4 of my pain medication taper down and I’m really scared. My doctor doesn’t even know it should take years to taper off of opiates and he’s done it in 4 months, life as I knew it is over, now I have to get used to my new life, thank God we just got a new couch. I can’t believe this is my life now. LET’S UNITE, START STANDING UP FOR OUR RIGHTS! Help yourself! Make a video.