Survey Finding Chronic Pain Community Energized and Angry

Survey Finding Chronic Pain Community Energized and Angry

By Ed Coghlan.

“They are amazing and they are pissed.”

That is how Terri Lewis Ph.D. described the early responses she has been receiving from a survey we are promoting on the National Pain Report.

The survey–which Dr. Lewis developed– is designed to capture data from the chronic pain community that can be shared with the FDA at its July 9 Public Meeting for Patient-Focused Drug Development on Chronic Pain

Dr. Lewis is keeping the survey open until June 17, at which time she’ll cut off the survey to prepare her findings for the meeting in July.

If you haven’t taken the survey yet, you may do so by clicking here.

At this point persons from all 50 states have responded, “some states far more than others,” she said.

As has been the case since the survey started, the respondents have been mostly women (80%) and over 40 years old, but she’s seeing a small increase in the number of people under 17.

In fact, the largest group of respondents is in the 50-to-59 year old range, which she points out is in sharp contrast to the JAMA article released last week that asserts the largest amount of opioid related deaths occur in people in their twenties.

“There are only a few respondents from minority groups, although the number has been picking up of late,” she added.

Dr. Lewis points out that a big number of people who are responding would otherwise be in the prime of their working and economic lives were it not for injury and illness that they endure. Public Meeting for Patient-Focused Drug Development on Chronic Pain
“They are very unhappy with the system they have to rely on.  They are extraordinarily negatively impacted by shrinking footprint of healthcare and public policy,” she pointed out.

Many of the respondents have been dealing with their illnesses and injuries for many years and had achieved some degree of stability of care until the opioid wars destabilized their provider system.

“Their disruptions are not disruptions of their own making – they are systemic in nature and for the most part imposed through public policy with the opioid wars and insurance changes.” she said.

“These are simply sick people, invisible to the system, who have been left to cope on their own,” Dr. Lewis added.

The goal of the survey is to bring the story of the chronic pain community to the FDA in July. 

Let your voice be heard.

Follow Dr. Lewis on Twitter: @tal7291

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Authored by: Ed Coghlan

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Glenn A Iben, MD

I am a DISGRACED family physucian. I worked 11 years in an inner city clinic I treated and also turned away a large number of pain patients. My wife has chronic fatigue and fibromyalgia. I think I know chroniic pian when I see it. My woman is deeply Christian yet has talked of suicide at times despite being fortunate enpugh to have found a family doctor who has prescribed her pain meds for a number of years. He is able to fly “under the radar” here in Ohio due to most of his other patients being not chronic pain patients. I was singled out for prescribing to people for a number of deaths in my practice during the Fentanyl doped Heroin epidemic. This still continues here. Many of my patients were on subsistance doses. Most were not on sSchedule II doses until hydrocodone was changed to that by the FDA. That was a shot which started a kind of Cival war between physicians and the Federal and State governments. No sensible physician would withstand this withering bow shot which intentionally hit the bow if the figurative ship However we live in an age of astonishing imaging studies; all of my patients who were on pain meds had studies to prove they had conditions which should to a reasonable person should have hurt.

In the end it made no difference. When the law is on your side, argue the law. The DEA investigator and the State pharmacy board took charts and found exceptions to laws I didn’t know exhisted. After a 1 year investigation, reasonably expensive, I was sat down in a room and subjected to a humiliation session. They showed a picture of my patient who had recently died with an enpty bottle of hydrocodone gripped in her dead hand which appeared to be posed. When people fall asleep or die things tend to fall out of their hands. This empty bottle had supposedly had close to 90 pills, having been filled days earlier. I don’think anyone can swallow 70+ pills nor 50 eggs. Narcotics even with tolerance are inherently irritating to the stomach lining. No froth about the mouth. Posed. I suspect the family took the uningested pills.
The medical board was curiously absent.

But an ADA was there to throw out a threat of prosecution for Criminal indifference to human life or Involuntary Manslaughter.

So I just wanted you to know what doctors are up against

Donna Ratliff

First of all, I’d like to thank Terri Lewis and Cindy Steinberg and all the Advocates who continue to FIGHT for Pain Care Rights.

I’m so grateful for all responses to the survey. Keep FIGHTING AMERICA! NEVER STOP until all this is repaired back to proper care.

We can’t forget there’s been an AGENDA this entire DECADE and I hope to hell we can get it recognized. It’s Not just the CDC Guidelines that’s harmed pain patients. Politicians used opioids as a subject for their own personal gain. There’s been a lot that’s caused this horrific treatment to go this far that’s affected so many! We can’t forget about all of those things.
There’s been a ton of profiling and discrimination against this population.

I pray to God that the messages sent will touch the hearts of the powers that be, ALL Government. Were going to find out soon from this meeting IF Government even cares about The people.

The intrusion and privacy on the lives of the people in pain and the doctors, it’s been SEVERE. Pain patients lives and freedoms have been TRAMPLED.
Pain Patients can’t live where they choose. Many are having to travel great distances to find care far from their homes. How could they work to support their families, pay mortgages or contribute to anything this way?
This isn’t life of Freedom, Liberty or American.

There was a time when pain was the 5th vital sign. Isnt that what a compassionate, modern Country is all about and what America used to be ?
Now, It’s been Ripped away like a DICTATORSHIP.
The only way to fix all this is to RETURN those Human Rights.

I hope America speaks and things change.
We need a MIRACLE now to change things back to Balanced.
AMERICANS can force it. Keep FIGHTING and don’t settle for less. 🌷

Why are physician assistants(at pain clinics) prescribing medication in the first place ? They are not qualified Dr.s. I can’t even find a good dr.where I live. There’s been a shortage of dr.s here for decades. All they did at the pain CLINIC is make my back worse than ever. I feel like I want to die NO SLEEP CONSTANT PAIN AND BLOOD PRESSURES SKY HIGH. My chest has been hurting so bad I think I’ll end up dying of a heart attack. Have not found a blood pressure medication that works. I know I can’t make it through another winter. I was in agony from pain and back pain has always made me sick to my stomach. A lifetime of scoliosis and rheumatoid arthritis,bulging discs,fibromyalgia,kidney disease, osteoarthritis(spine) vasculitis,neuropathy plus high blood pressure has taken its toll on me. I’m a dead woman walking very slowly. At least I can still walk. I do use a cane though but,no walker yet. Take care my fellow warriors.

I’m scheduled to attend this FDA meeting in 7/9. I registered and am in chronic pain every day. This condition ignored and doctors refusing to treat pain properly as they should due to the frantic opioid crisis. Chronic pain sufferers don’t want to take medication for pain. However if it gives them some quality of life, we have no choice! Now doctors are taking away pain medication from patients in chronic pain in fear that these doctors will lose their license for prescribing opiates. The epidemic on opioids is black
Market. The chronic pain sufferer only wants less pain and hope to be able to enjoy family. We have disrupted so much already due to chronic pain. Family tires hearing us complain. So now we have to remain silent. Chronic pain is a lonely affliction and can’t be talked about! Many doctors do not understand this horrible pain. I wished I could provide binder clips to doctors who refuse pain prescriptions. I would love to use these binder clips on their bodies for a week and allow them to feel pain 24/7 without intervention.

M Billeaudeaux

thank God we had a great response to her survey. It was so important for them to hear us because it seemed we were left out of every conversation I’ve seen. We exist, we are important to others, we live, love, and contribute everyday. We are chronic pain patients who deserve to be able to live pain free lives.

Alice

I spent an hour writing a comment for that survey. But I don’t know if it went thru or not. It was unclear to me. All that work dang.

Nancy

Thank you Dr. Lewis and Ed for what you are doing. I pray that you are able to make the government see just how outrageous these CDC Guidelines are. As you are well aware, the majority of chronic pain patients are not the abusers; yet they are the ones suffering and have no where to turn for help.

To make things even worse, NBC World News (Lester Holt) reported just this week on the new “Anti-Opioid Crisis” Ad Campaign. The Surgeon General was also interviewed. The same group that did the very graphic smoking Ad Campaign are the creators of the “ Anti-Opioid” Ads. Of course, a warning from Holt is in the beginning to warn the audience of how graphic they are. This is another outrageous act. It is totally destructive and hard to believe that the politicians behind this campaign are supportive. If you have not seen the ads, I would like to suggest that you view these. They are online now and will soon start appearing on TV. This approach to me is horrifying.

Thanks for the article. I just wrote a personal invitation to Dr Ronald “Doc” Myers, whose rural Mississippi practice sees many African-American pain patients with Sickle Cell disease, and he promised to pass it on to someone he knows at the World Sickle Cell Federation, to give Terri’s study greater exposure among the Sickle Cell population who are clearly under-represented.

Sickle-cell disease is particularly nasty, because during pain flares, the disruption of the person’s endogenous morphine supply, actually blocks their blood cells from transporting oxygen between their lungs and the rest of their cells. These people can not get adequate relief for their condition from NSAIDS, medical marijuana, and other opiate substitutes. Once in a sickle cell crisis, they need real morphine. Bad public policies that are based on lies about how morphine works, are literally killing these people. Their voices need to be heard at FDA.

Holly

“These are simply sick people, invisible to the system, who have been left to cope on their own,” Dr. Lewis added.

I was just reading along til I read this sentence and I laid my head down and cried.

I will do everything in my power to come to the meeting July 9th. Thank you Dr. Lewis.

God bless us all!

I live in the Pacific N.W. with only one pain CLINIC for the entire Willamette Valley. I’m so sick I’m afraid I am dying due to extremely high blood pressure as a result of losing my pain medication. My heart’s going out on me. This fake opioid crisis will absolutely be the death of me. I was born with scoliosis and needed a back brace since I was four yrs.old. Back braces now cause to much pain to wear one anymore. I was told to stop whining and that I was fine by my cheap selfish alcholic Father my entire childhood. I was not faking then nor am I faking now. Because of my Fathers abuse I never saw a back Dr.until the school forced my parents to take me to a back Dr. The scoliosis had progressed to far for me to wear it. I’ve never had a supportive family whatsoever all because of an evil alcoholic greedy selfish Fathers verbal abuse. It’s been extra hard just getting through another day. So many health issues and Dr.s don’t want to deal with chronic pain suffers with this drug war on opioids. Clinics don’t have to purchase insurance for Dr.s to write pain meds since patients are farmed out to pain clinics. How is it our primary Dr.s can’t write pain meds but,at the pain CLINIC a physicians assistants can write scripts for not only pain meds but,all other drugs as well ? This seems highly dangerous to me. Is anyone else experiencing this sort of thing too ? I’m floored and scared I can’t believe this ridiculously dangerous practice by pain clinics. Physician assistants were never meant to be anyone’s primary care dr.s but,they think they are. This is insanity plus they DID NOT GO TO MEDICAL SCHOOL. The one I saw at the pain CLINIC was a baby faced pompous jerk who had never had a single day of pain in his entire life. How could he ever relate period ? He can’t possibly know what it’s like to live with pain everyday of your life. Nor can the dea,cdc or fda. Look up Dr.Lilly online concerning incomplete research data for opioids deaths. Less than 2%(1.7%) of pain patients prescribed opioids ever get into ANY KIND OF TROUBLE INVOLVING PAIN MEDICATION. Gov.fake crisis is based on misleading, missinformation and downright false research data. Fentanyl is what is causing the death rate to soar not oxycodone.

Traci Gresham

You have no idea how happy I was and teary eyed when I read this so tickled someone is advocating for us for the ones that can’t I’m sitting here hurting not taking my pain medicine cuz I have to stretch it over a month because my pain specialist only gives me a month supply which would be like one a day which helps in the morning that’s the only way I can survive when I get up is to atleast have half of it I sit here and worry to death before the months is at the end what I’m going to do if I run out and I know if I ask they’re not going to want to give me more or keep on giving it to me because of all this [edit] going on I have already gotten depressed about it it’s just a mess I could go on and on I just want to thank you so much you have no idea

William Dorn

I pray that someone at the FDA will listen to our pleas. We just want what everybody wants a fairly normal life. Pain patients have never been the problem and they know it. Why they want to harm us we will likely never know but maybe this will change things. I will keep praying that they will do the right thing. Keep fighting.

Alan Edwards

This is an apology for attributing the survey to the FDA instead of Dr. Coghlin and The National Pain Report. It seemed too advanced or well-crafted for the FDA or CDC. I hope it has an impact. There has to be a competent individual within the FDA. They retracted some of their false opioid fatality numbers by at least half. Even the fentanyl- alcohol- meth etc. deaths being reported were false and far reduced. Mr. Kolodny and Ms. Ballantyne cannot be reached for comment…lol.
Tucker Carlson would retract his statements made one year ago if he were aware on his show. He is on Twitter and someone should contact him after he compared prescription opioid deaths to be greater than 9/11 WTC deaths per month. He is a decent guy and if confronted with the truth would retract his statements on the air.

Casandra

I sure hope this survey makes an important impact on the FDA/Government agencies so they finally accept that chronic pain patients are both the druggies/opioid abusers. The survey was exactly what we needed to address for quality of life in chronic pain patients.

Tracy Cabanting

Thank you to Dr. Lewis, Ed, and everyone that responded to the survey!
Hopefully, our voices will not only be heard loud and clear, but I hope that The Powers That Be will hear our stories and start to right the wrongs that have been done to us, the Chronic Pain Community!
I also hope that I can get back to how my pains were because I am really struggling to get through each day, I wake up each day in tears from the pain and can barely move, and my heart goes out to all of my Brothers & Sisters in Pain.
We need to keep fighting, telling our stories, looking for, encouraging, or even becoming advocates ourselves!
It was a (somewhat) slow process to get to this low point, I hope and pray the journey back up towards the light and how things “should be” for us is quicker.
I’m not sure how much longer I can fight the pain. This is NO WAY TO LIVE!

Steven

My heart cries thank you to you for your compassion and love for people who hurt. I don’t think any of us did anything to deserve our situation and we certainly don’t deserve opiate Wars. It’s too late for me. Sadly, they’ve already killed me. I can’t go on being tortured like this. Am I and a few others the only people in this country that feel like this?