CDC Chronic Pain Protest Called A “Start”

CDC Chronic Pain Protest Called A “Start”

By Ed Coghlan

An Indiana woman and about five dozen other chronic pain patients stood in front of the Centers for Disease Control Headquarters on Friday to protest the CDC Guideline on Opioid Prescribing.

The protest—officially called an assembly because the organizers secured an Assembly Permit—was mostly symbolic and drew some Atlanta media plus many more people who followed and promoted n social media.

Johnna Magers of Indiana conceived the idea. As a chronic pain patient for nearly two decades she knows well the impact the CDC Guideline and DEA pressure has meant to prescribing doctors and their patients.

“The energy was amazing,” she told us over the weekend. “This is just a start; we need a lot more people to show up in the future and make our point.”

When asked if anyone from the CDC came down from the office to talk with them, she said, “of course, not.”

She is already talking about making a trip to Washington D.C. and make the case to both elected officials and the Drug Enforcement Administration that pain patients are being hurt by the so-called “crackdown on opioids”.

“We need that CDC Guideline rescinded and for the DEA to stop terrorizing our doctors,” she said.

She also pointed out that pain patients need to literally get up out of their seats and start making more noise.

“We can’t make excuses,” she said. “Until we have the numbers of people who are talking about the issues, having conversations with elected officials and getting more attention from the mainstream media, we can’t expect any change to occur.”

She was effusive in her praise of the folks who traveled from across the country to participate in Friday’s event.

The time has come, she said, for our government to understand they are punishing people in pain.

The “assembly” (aka protest) drew praise from many pain patients who read the National Pain Report but couldn’t attend. Here’s what Fila Paragas told us:

“I am with you all in thoughts and prayers for your great efforts despite tremendous difficulties with all your conditions. Pain patients are suffering in US and elsewhere. Some are no longer around to lend their voices. Chronic Pain patients and their lives do matter! You deserve better…to be treated with dignity and respect! And more! Let your voices be heard. Thank you very much.”

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Authored by: Ed Coghlan

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Gregorio Morales

I am a victim of an ALLEGED DEA ABANDONED PATIENT BY PAIN MANAGEMENT SUFFERING GREATER NOW WITH PUTTING A GUN TO MY HEAD DUE TO SEVERE PAIN BACK 2017, LUCKILY VA AWARDED ME A SPECIAL CLASS PERSON, A USMC CONTAMINATED VIETNAM-ERA VETERAN SUFFERING FROM AGENT ORANGE AND LEAD, MERCURY, BENZENE, PCE, TCE, VOC’s CHEMICAL POISONING. I NEED PAIN MEDS NOW, VA HAS PUT ME ON SUBOXONE TO HELP WITH WITHDRAWALS ONLY BUT NO FUTURE PAIN TREATMENT PLAN WITH OPIOIDS?

Rosalind Rivera

Kudos to Mis Maher’s!!!,
I myself am a chronic and intractible pain sufferer who resides in the state of California. We have to become a much more commited people in the fight for our very lives. Not only are we suffering tremendously but are being forced to turn to illegal drugs as well as the underground market in order to find much needed relief from our constant and continuing suffering. Suicides among pain sufferers are escalating at an alarming rate due to the unfair and discriminating statues set by the CDC and other hovering groups. The rate of pain sufferers seeking illegal drugs will continue and the rate of suicides will continue and at a much, much larger scale. How many pain patients will have to resort to drastic and ultimately deaths due to the use of these illegal drugs and how many suicides of pain sufferers will there have to be before these homicidal laws enacted by selfish, cruel and uncaring as well as murderous governing groups will there have to be before even one of these lawmakers finally sit up and take notice of the horrible, horrendous and cruel suffering and ultimate killing of us is recognized and their laws are ultimately and radically changed, how long?

Happy Independence Day

Years have passed since sixteen of some of our least favorite democrat senators ordered the DEA to stop the manufacture of all injectable medications. Jeff Sessions approved the senators’ move and President Trump signed the order. This was included in the current anti-drug bill that pain patients have been enduring or haven’t survived. After some time passed the drug companies could get an increase on prices, and with advocate pleas some drugs were ordered to begin limited manufacture with most medications only going to hospitals. Since this move didn’t help our nation’s ill, this looks to be an erroneous political move that may have left many of us wondering why our elected representatives have done this thing that is not in the best interest of the people. The answer may be just as simple as the usual which is money but it involves much more than dollars. As someone else pointed out recently, there is entire shift in demographic being engineered right in front of us that is leaving behind our sick, elderly, veterans, and other groups that may no longer contribute in the way needed by our elected and cost our government too much money. Not only is this happening in the good old USA but in Europe as well. There are many theories as to what this shift will accomplish and for whom but whatever that is means a deadly demise for the nations ill and other citizens living on the last of their dignity and whatever crumbs allowed to be thrown to them by the wayside.

I wish I could post a picture of my back I have 8screws and 3rods pushing though my spine which broke 8dics and neuropathy also osteoporosis and fibromyalgia and arthritis along with the other medical issues horrible knee pain I was never a drug addict or drug seeker I am not addicted to pain medication I need it to function daily living in pain 24/7 sucks taking away Doctors rights to treat chronic pain patient should be a crime I have been up another whole night pain is out of control and for the first time in years I have been invited to a 4th party no alcohol involved but in ground pool and I don’t think I will be going it truly sucks

Researcher

It’s many things wrong.
The CDC & addicts have no power to censure Dr,s & pharmacists.
The DEA has been cutting back on how many opioid meds are allowed produced since 2010.
There is no opioid “epidemic”.
The definition of addiction was changed to “physical dependence” in the DSM-5 before the CDC guidelines.
Meaning a 80 yr old who never touched any substance is EXACTLY the same as the recreational drug user.
Blaming addicts & the CDC is the height of ignorance while the DEA pulls Dr’s licenses & shuts down pharmacies for filling “too much” a amount not specified.
Why would Dr’s listen to the CDC? It’s not their job to regulate Drs & they have no power to enforce any regulations!!
Worse, they know more than 10% of suicides are CPP’s.
And they’ve told you what they are doing.
The laws implemented on State levels aren’t due to opioids either…there’s no harm reduction in my state, the “save” drug wouldn’t work anyway, there is a average of 5 drugs in a addict’s OD, reversing opioids wouldn’t make a difference.
There has never been a opioid crisis.
It’s time to look at the Big Picture. It’s all rhetoric, the problem hasn’t been identified & addicts are victims in this scheme as well.
The Government planned this in 1993 & it’s on Wikipedia & in original format online, for God’s Sake, wake up.

Dan

Things are getting worst. I was told by a friend, that she was told about a conversation overheard for plans for serious violence and revenge, against doctors, and others, responsible for the agony being caused to innocent people, and others, without regard or respect for the veterans who paid the price, for freedom, and rights in America. Apparantly at least one friend died after being denied pain medications, and committed suicide. Another friend died from a heroin overdose, and from what she overheard, others were now homeless, living on the street, and addicted to alcohol, etc., stealing and worst, just to numb their pain. They felt disrespeced and worthless, regardless of all they lost, fighting for this country. The scariest part overheard were comments made about plans to make these people ( doctors, politicians), anyone who caused their untreated pain, and unjust judgement, pay. Since I was not there I can’t say exactly what was implied, but it was a plan that included murder, and revenge. The conversation also implied they were not the only ones planning revenge for the suffering caused by the cdc, etc., I was not there, and I am not in contact with the person who related this news, but from what I was told, there heard plans being made as we speak to make the policy makers, and anyone responsible pay for the injustice, death, and dispair this immoral, and unjust war has caused innocent people. They expressed that war is war, and they never thought they would be fighting a war right here in America, after believing, they fought for freedom and justice. The destruction being caused against innocent victims of torture and pain. This is scary. We can only pray people do not get pushed that far. I do not advocate violence. I also do not advocate pain inflicted on innocent people. These injustices are pushing people over the edge. I am scared for America.

Jeffrey Sampson

To all,
I have not yet suffered complete pain therapy removal. However my meds have been lowered the most important one has been lowered to a non therapeutic level that being said it does still help me. If marijuana is legal in your State I personally encourage everyone to try it it doesn’t help everyone but does have a high success rate. My State just legalized it to recreational but I have been a medical patient for years and it helps me sleep and does relieve pain it won’t remove it but I take relief where I can get it, you don’t have to smoke it there are oils, etibles many ways to consume it without getting the lungs involved I have yet to.run into anyone that it doesn’t work for they claim it doesn’t work for everyone so I do give that some credence regardless it’s worth trying it’s better ythan doing nothing.
My heart aches when I read all these horror stories of people in my own country being completely denied access to help.I have lived in severe chronic pain most of my life I understand each and every person being denied it’s criminal that addicts have abused so that makes all of us abuse. I have never not once abused my medications ever always passed drug tests and pill counts yet I live in fear just like the rest of the people always afraid of when it will be my turn to be taken off these medications as it will cause me to become suicidal very quickly!
I pray for all of you and your family its so wrong to do this to sick people!

A Willis

For everyone commenting about their pain and/or how something needs to be done, PLEASE, PLEASE, PLEASE make a plan on what you can do to make it to the rallies!! We MUST have more people! No one should be thinking, “well, everyone else will go”, because that’s NOT what happens! I get it – it’s very hard to go to a rally, even if it is only 2 hours (and you can just stay for the first hour). I’m in bed all the time but took measures to ensure that I could make the rallies – just like I go to my doctor’s appt. every month. Sure, the rallies aren’t as close as my doctor’s appt. but I did things to help my comfort level as much as possible and bit the bullet because it was important! I won’t lie and say I wasn’t in a lot of pain especially with the drive to/from the CDC (12 hrs each way). It was hell and it was still hell 2 days later – or actually 3, but it was well worth it and it was very much needed! A handful of people can’t fight for the millions of pain patients though, and be successful. We need help! Heck, even vent patients go out sometimes (I worked for one who actually went to college), so if they can find a way to get out of bed, we can too!

Kelly M

I was on pain meds for over 20 years from a horrible car accident, psoriatic arthritis, complex regional pain syndrome and 5 ankle surgeries in less than 3 years with the last one being an ankle replacement. I never failed a drug test or was off on a pill count. They even made me drive there the day after getting out of the hospital from my ankle replacement to count my pills. Then all of a sudden 1 day I was told they were no longer going to prescribe to me. They lied and said my pharmacy said I picked up a medication when I never did. I called my pharmacy and they said they never talked to anyone from my doctor’s office. I called my dr and they said oh well, we still aren’t prescribing to you anymore. I asked why and they gave me no explanation. Every day I struggle and some days I wonder if it is even worth it anymore. I followed every rule they gave me but yet I sit here and suffer because of someone else’s mistakes. Something needs to change and fast!

I’m sick this I’ve never been treated like a dog on a chain cause I need meds for pain I’ve got MRI stating I’m in pain these doctors dont give a crap

Donna Noe

I have severe spinal stenosis to the point that I can barely walk some days. Add that to the various autoimmune disorders that I have and I am someone who suffers from pain on a daily basis. When I first started taking opiates every mental health facility in my city tried to tell me that I was an addict.
No. I am not an addict. I do suffer from major depressive disorder as well as major anxiety disorder.
My PCP decided to quit his practice and go to work for corporate America. Since then I have had no pain killers whatsoever.
A few years ago I broke my left tib/fib (both the long bone and ankle bones) in my left leg. I thirteen different breaks requiring two surgeries. I was only given regular acetaminophen and motrin for pain. By the time midnight rolled around I was in tears begging for something to knock me out. The answer from the surgeon was no! I had to get my son to call the hospital and basically threaten to sue them before they would give me anything to relieve my pain.
No one should have to suffer like that. Ever! I have never sought out drugs from the street, taken heroin, or anything remotely untoward.
I, and people like me, should not have to suffer because other people become addicts. I didn’t. However, I am paying for those who did. I have absolutely no empathy or sympathy for addicts.
Maybe addiction is a disease. I used to think so. I am not so sure anymore. I think that it might have to do with one’s character and ability to cope.

James Robert De caro

Thank you,all for your courage and defiance of these idiotic policies,as I watch my wife in pain from having her medication taken away ,leaving her in constant pain thou the cdc responded to my enquiries that again this is just policy guidelines and these doctors should not be force tapering medication when their patients have legitimate documented medical issues ,this is exactly what their doing even cutting them off all at once,,.more BS I wish these people would get on the same page or doctors read their mail or emails from the CDC.again thank you all

Robin

I have read most of your posts. I, too, was booted off my Vicodin after 8 years cold turkey, expelled from the practice my family were patients in for 23 years. And lied to and about by their practice manager. I have inoperable spinal/disc injury. 12/28/16 six days after receiving my last script from that practice, Physician Care, Towanda, PA, I was sent a letter telling me the aforementioned. The practice manager handled the complains regarding this and she lied about me to me. When I corrected her and even sent her written proof she disregarded it. Infact the PPMB state registry for opioids proved her a liar. In addition to my spinal issue I have severe arthritis and bursitis in just about every joint in my body. I have two shoulders rebuilt, a right knee replacement….which still hurts like heck 2 years now, and a hip replacement. I was awaiting my hip replacement surgery when I was cut off. I slowly weaned down my dose to make it last as long as I could and still have some degree of comfort atleast to sleep at night. My late husband was permanently disabled Viet Nam Veteran, he was bedridden, and dying. I was his caretaker. Left without medication…when my meds ran out I went to er for help. I was given 10 days worth of tramadol which got me to my surgery. Fortunately my orthopedic surgeon is in another county and hospital where my pain needs were met 100%. He referred me to another family practitioner at that same hospital who obtained all my records and restarted me on my medication. Thank God! I know many in this county…Bradford County, PA..who were turned into criminals as doctors cut them off cold turkey…yes it was a decision that the medical groups in this county did together so they could not be blamed for the overdoses. Many ppl began buying drugs off the street…heroin, fentanyl , even meth. Over dose rates continued to climb…why? how? all the prescriptions were cut off….it was the heroin, fentanyl ,and pills illegally obtained.

Holly

Thank you all from the Bottom of my heart!

Bones

If I was Dr force tappering legit legacy pain patients for fear of the DEA I’d be very careful how far I let that pendulum swing. Take my neurologist for example he was second leading prescriber in my state and I myself was at 500mme per day at one point with 5 narcotics 12 scrips total now I’ve been put at 0 and haven’t so much as walked into a pharmacy or taken any drugs for a year. All I ever did was ask for help and now I’m without any help and I’ve been through this. Seems like this side of the pendulum makes Dr just as if not more guilty but they don’t see it this way evidently.

Paul Randolfe Rogge

I have chronic pain 24/7 and after I moved to another city it is impossible for me to get any relief. What do you in a world that does not care.

Darrell Taylor

If people can’t acquire pain meds needed for profound unrelenting excruciating pain…sometimes they have no recourse but to obtain much needed relief from street pharmacist..illegally..we have been law abiding working class citizens all of our adult life..me a fireman for 32yrs..a lifeguard my teen years..my life dedicated to public service.Being a fireman in the ghetto is no picnic ! During my tour I have numerous broken bones..COPD..arthritis all over (freezing weather.while handling water under immense pressure)..I’m not one to cry that’s what I signed up for..but I didn’t sign for chronic pain that was somewhat controlled with medication & physical activity only to have it partially eliminated..my pain hasn’t been partially eliminated.Doctors to should grow some & lobby against this uncaring legislation

Tina Block

This is a Cluster!@#$%.This should have never been an issue. It is Not the legit opioids that are the problem it’s these people including myself that are being hurt and it just is unacceptable. I also have been on pain meds for over 25 years and I have never had it be a problem or an issue with taking my meds. How is it even possible that we as pain patients are being lumped up as having pretty much the same pain that lets just say ,my neighbor(Fictional) has. This is not a one size fits all problem. We as pain patients should not be made out to be DRUG ADDICTS!! I think there should be two sets of rules here for those who are chronic who have been forever and those who are not. Why should us legit patients ever have to go through what we go through even to get our meds once a month. It is not fair and I believe that it is also unfounded. We should have never had our meds decreased. I was finally to the point where I was getting a good amount of relieve with the drug regimen that I was on 4 years ago. The quality of life from back then until now is dramatically decreased. How could that possibly be good? We need to get this handled ASAP. There are people from before this MESS ever started that are no longer with us because they could not see their future having to be in PAIN the rest of their natural life and again. We as pain patients should be given a free pass from all this. I wake up and I am in pain because I was forced to decrease my meds. I no longer have the right to take a pain pill when I am in pain because I no longer have the right to feel not Great but just OK.

Tina M Lucero

My Prayers and thoughts go out to all people around the world who suffer with chronic pain. We are all suffering such horrible pain that these Guidelines that are set forth are just so wrong. God forbid if they had to suffer with excruciating pain constantly 24 hours of each day. God Forbid if they had to suffer with Reflex Sympathetic Dystrophy or Fibromyalgia or Chronic Fatigue Syndrome . It is a crying shame that not only do we suffer pain but humility .We are all Labled Drug Addicts !!!!Because we have to take Narcotic Medication for our pain.God in Heaven I pray that the Medical System opens there eyes to what and how they are treating us patients that really do need opioid medicine to actually continue living.
Yours Truly. Tina M Lucero. In Santa Fe New Mexico

Cindy Alexander

How to u get these comments to Trump?

Gail Honadle

There is other avenues left, find out when your US Senator or Rep will be in their Local offices and Hold your Own Rallies. Phone them, bug them to hold Town halls in each county they cover. For a Senator that is every county in every state, for a Rep it is their district. Find a Pain group to join who is active not just gripers. Buddy up with VETERANS as they were the first to be Forced Tapered. This does not have to be a nationally organized event, just get the Press involved, have the new CDC Guidelines with you printed out, have hard facts that the Director of the CDC and Andrew Kolodny LIED. Cato and Reason has those articles, That Kolodny is being paid for his testimony, and his ownership of Phoenix house Suboxone Clinics. Google Redfield he has a 37 yr old son who OD’d and lived on Heroin/Fenatayl, then he delcared WAR on PAIN PATIENTS. USE the Right words. INTRACTABLE PAIN and Pain Meds. Do not use Opioids, public is to confused to know the difference in what is Legal and what is Illicit. Nor do they know the difference between Intractable Pain which last a life time and Chronic pain that can last a few weeks to a yr. Hand printed Signs, Hand made shirts. Come in your wheelchairs, in a van with a padded lounge chair. DO not dress up, come in your PJ’s, Robes and slippers if need be. Bring plenty of water, and other energy products you can use. Video your own Rally and Upload it to a Pain group or other web hosting sites. You have to fight as dirty as they do.

Muad'Dib

The “crackdown” on opioid is nothing more than (Washington D.C.’S ) response to (THEM) not getting their cut of the proceeds of the revenue generated from the sale of opioids that have been diverted to people other than whom they were prescribed for, and nothing more.
One can not cut out the biggest gangster on the block and not expect repercussions.
The government “crackdown” impacts mostly law abiding citizens in pain. The cartels are not getting drugs into the U.S. without help from within the U.S. government. The illicit narcotics trade employs way too many people to be stopped. To slaughter that cash cow would a mortal sin to the sycophants in charge. All these regulations are merely done for theatrical purposes, to save face, and nothing more. Oh and by the way, heroin is now cheaper than cigarettes on the streets of America. It’s 2019 way to go war on drugs!

TAMMY LANETTE HOCHSTEIN

Since this has happened, sadly, BECAUSE of the restrictions we now face and the level of pain that some patients are SERIOUSLY facing on a daily basis… there has been MANY SUICIDES that for some reason, has somehow been overlooked in our media or is being purposely kept out of being broadcast to the public on our media… even when they have little to report that day but discuss how many red lights had been run through by drivers that week- that caused no wrecks and no harm to ANYONE… yet, the suicides that are happening because of how much pain these patients are in, and now their doctors have cut their medicine down so much that they’re pain is no longer being controlled- and they’re suffering… all because the doctors treating them for their chronic pain are scared to death to prescribe enough pain medication for them to get any relief. Their stories are so traumatizingly sad and so horrendous for what these people went through and how their doctors treated them before they took their own lives. You can find their heartwrenching stories online but you WONT find their stories on our mainstream media on television. WHY DO YOU SUPPOSE THAT IS? They’ve tried to convince EVERYONE that this is a good thing? I am a chronic pain patient and I know of 2 patients we’ve lost here. When will this ever be an issue for the news to think it’s worthy enough to report? How many chronic pain patients will we have to lose BEFORE something negative is said about the medication cut downs and what it’s truly doing to the patients? ESPECIALLY when the prescribing doctor cuts their medications down way past what is clearly acceptable by law because of the fear that they will be put in jail? That is what is happening. So many doctors have decreased their patients medications far beyond what the CDC says they can prescribe, sending patients into detox & some, ultimately, to suicide. It seems that no one truly cares about those who desperately need this help.

I wrote yesterday concerning my condition with ON, I have a very rare form and Trigeminal nuralgia. I also have herniated discs in my lower back and nerve involvement in the mid section of my back.
After several blocks which did nothing and surgery which caused nerve damage the pain is excruciatingl.
The reason I am writing is about Medical Marajuna. It has helped many, but, please be aware it not only has side effects, but, it can make your pain much worse if you are an ” opposite”.
What makes it work for so many is what is so destructive to others, THC. Even pure CBD can do this. Because I am aware how I react to any medications since the surgery which damaged the nerves, I started with the smallest dose not what was recommended. I tried them all. Vapors, drops, pills. Because my pain is so severe and constant they suggested 60-100 mg q2 hrs. I took 5 mg and my head exploded with pain and had to lay down. I tried for several months. THC was discontinued at once. I was told I just needed more. At one point against my better judgement I took 20 mg. I could not walk, and the pain so bad words could not describe it. Also it causes dizziness and instead of calming made me very hyper. This was pure expensive MM CBD no THC.It also caused diarrhea.for me this was the last hope in oral medication.
I am writing this so others have this knowledge. I was told at the place it had helped everyone.
I was unable to look it up on the internet because of the light. I type in the dark. Months later I was able to look it up and it actually said it can make pain worse. I threw thousands of it away untouched each time I went and had these reactions.
I wanted to let people know who may not be aware. I hope all have great success with it, just know the symptoms if you do not.

Mr. Pissed cat

The opioid ” crisis” is nothing more than a reactionary ploy by the DEA to save face because they can’t stop the flow of heroin from cartels into the country. I have yet to see a politician with any balls stand up for the rights of pain people in this country unless it would get them more votes they will throw all people with cronic pain right under the bus. Large corporate hospital systems are no better. They treat people in pain with no respect either Corporate hospital systems are no better than the goose stepping DEA and the spineless politicians that only care about money and votes

Candace

I am interested in contributing to the chronic pain protest.
I’ve suffered with fibromyalgia for 30 years and the only thing that helps is 2 tramadol a day.
I worked full time and now take care of my special needs grandson.
I wouldn’t be able to do this without tramadol.

David W Cole

Excellent job to all that participated, wish I could have been there. We need more people going to these rallies, protests whatever you want to call them.

David W Cole

Good job to everyone who participated, unfortunately 3,500 miles is just a little bit too far for me to go. I’ll do what I can from on the West Coast.

Paula Martin

I’m with you totally. I’ve suffered with chronic pain for years I get treated like an addict I can’t get the pain Meds I need i am confined to my bed while my family suffers I had failed back surgery and need more surgery which they won’t give me I’m in pain 24 hours a day it’s horrendous

The Insufferable Movement

Margaret Hardin, Hi from The Insufferable Movement and Chattanooga TN ! We are going to post your story and try to ask everyone in the community to help you and the other patients at your clinic brain storm. Please reach out to me to give more info, yes, in Chattanooga several clinics dropped all patients to 50 mme and off of Fentanyl regardless of diagnosis, palliative care status for all patients that did not have cancer, and fired many patients that did. These clinics colluded to do this together quote on quote As Told to me by a nurse practitioner ‘to protect themselves’ , many patients that were on fentanyl the encouraged to put on Suboxone or buprenorphine patch or have to be discharged… Let’s see what we can do! Lindsay at The Insufferable Movement on Facebook

IT HAS BECOME TOTALLY INHUMANE, NO PAIN MEDICATION OR INSANE LOW DOSAGE..WITH SCOLIOSIS AND BULGING DISC, I AM A 63 YR. OLD BARBER..10 HOUR DAYS…DYING IN PAIN DYING INSIDE SLOWLY DAY BY DAY…I TOTALLY UNDERSTAND THE SUICIDE RATE BECAUSE OF NO MEDICATION AND MADE TO FEEL LIKE YOURE A DRUG ADDICT !…HELP SOMEBODY HELP. ( NOT TO MENTION PEOPLE DYING FROM HEROIN BECAUSE CANT GET ANYTHING ELSE…SOMETHING HAS GOT TO BREAK..WITH THE INHUMANESS. !!

Randy

I applaud the people able to physically and financially who could attend the protest. Mainstream media will never report the indignities we chronic pain patient suffer through on a daily basis. Social media should be a way to speak out. Facebook, Twitter and blogs can get the message out there. Until the people cry out that pain is in itself a medical issue and not just a byproduct of normal every day living. Pictures and personal stories must blanket the media and on everybody’s mouths. The pain will stay the silent killer it is.

James McCay

First I read the topic, then I read all the dozen+ responses. There’s a COMMON THREAD here that I think is being missing by those in power to change things FOR US who are suffering from Chronic Intractable Pain: PATIENTS ARE BEING LIED TO OUTRIGHT BY OUR DOCTORS!

Until I found National Pain Report I was doing as much advocating for everyone as I could: in constant very severe pain everywhere, from my bed with my laptop, with Advanced General Myasthenia Gravis with Hyperthymusism (no meds work right or at all), Degenerative Disc Disease (6 discs in my neck & lowest back), and Fibromyaslgia. I have Diabetes II as well, but I’m not overweight!

My 8-year Pain Management doctor (who everyone thought was SO WONDERFUL) gave me that BS story about how “The Attorney General came to my office and is MAKING ME lower all patient opiopids by 10-20% or I’ll lose my license to practice medicine.”.
He made me wait until the last minute to see me. Then I had to force my way into his office (while he was with a patient) and tell him to prescribe my medication because “I NEED TO LEAVE RIGHT NOW- OR I HAVE NO WAY TO GET HOME!”.

He gave me the BS statement above regarding lowering EVERYONE’s OPIOIDS that I KNEW WAS A LIE, as he was nervously uttering that BS! Then my Methadone level of 8-yrs was lowered by 10%. I’ve been worse ever since.

Oddly, I’m his ONLY PATIENT who called the NY State Attorney General’s Office over this! The AG’s Office completely checked and told me “We never tell or suggest to any doctor how they prescribe Opioids; because it’s against the law!”. I also got the EXACT SAME RESPONSE from NY Dept. of Narcotics & the U.S. AG’s Office! WTH???

So I had to do something to make him fear his patients & it luckily worked!

He admitted to me 3-months later “I broke my Hippocratic Oath; I’m hurting my patients!”. But never admitted LYING- THAT I PROVED! They ONLY care about themselves due to paranoia the DEA started- thanks to the CDC!

Donna Hill

God bless righteous efforts! Johnna is 100%spot on. Down 50 lbs now from the pain. Being literally starved and tortured to death by my own government. I will go down yelling the truth! What do I get for asking the CDC direct questions about why they are not keeping track of the suicides they caused? After 33 times classified suicide as low priority! Now they have the temerity to list my name on a violence report…simply for respectfully asking this vitally important question.

Kelly Johnson

I wish I had known. I’ve just subscribed. The doctor’s in my city no longer want to prescribe Vicodin for my headaches and pain due to a brain injury. I’ve had to start using g kratom as a substitute. They tried prescribing a non opioid medicine. The side effects were seizures, liver damage, stomach problems , etc. It’s crazy they would rather me risk having seizures than to give me Vicodin which I only take half a pill a day along with my Lyrica just to make it pain manageable

Eric

I could not agree with all the other comments here, many of us are professionals who contribute to our community and we are treated like common drug addicts or dealer, it’s no way to live. God forgive the people who make these rules they surely know not what they do to people lives.

Susz

Meds stopped abruptly after 35 years. Very cold turkey!!! Terrible Methadone clinics refuse pain patients; must be heroin ‘street addict ‘ yet Medicare will only pay for methadone if its for pain, NOT addiction. Decided only option is pain pump, CDC/DEA doesn’t have guidelines in place for that…YET!!

Jeanie L Fetterman

Kudos and prayers for you all. I would love to be able to stand next to you. I write this as I lay in bed barely able to move due to back and neck pain. Constant pain in my lower back, hip and knees along with severe muscle spasms in both legs but (especially the right side) because I had my pain meds and benzodiazepines taken. Now I’m treated worse than a street junkie. I wish I were dead but don’t have the courage to do it myself. There is no quality of life for me anymore. I GET it. Prayers for strength and wisdom for you all. I’m old and won’t benefit from your stance but pray that your voices will be heard and fruitful and for others for whom it won’t be too late. The weakest have been the ones singled out while the street drug abuse worsens. I believe this issue has been a smoke screen for the government
to usurp power over the medical system and pharmaceutical companies and leaving legitimate pain medication recipients to suffer inhumanely.

Thank you to all who were able to attend in Atlanta. Even if I could travel that far, I don’t have a car, and y’all would get tired of dragging me around on my mattress.

On a serious note, I hope to whatever power that they aren’t going to go after the fentanyl patches. Even at a little less than half my therapeutic dose, it’s usually enough to keep me from screaming (I’m a legacy patient who was forcibly tapered, go figure). I was hoping to start getting my life back, but it looks like they want to keep us bedridden, if not worse.

[…] By Ed Coghlan: For More Info, Go Here… […]

Felecia A Allen

CDC doesn’t care if you are in so much pain that you are suicidal. Just so you aren’t addicted when you killed yourself!

I am a chronic pain sufferer too,I have fibromyalgia,degenerative disc disease and arthritis in my back and hips,I have done physical therapy,epidural injections which made my pain worse. I have been on norco and lyrica for 11 years.My pain management doctor was arrested a few weeks ago and I wasn’t able to get my meds this month. I had to go to the emergency room I was in so much pain I couldn’t get off my heating pad to do anything. I was treated really bad,I told them I had been a week without my pain medicine and they told me I was withdrawing which wasn’t true,I wasn’t and haven’t been sick but I have been in a lot of pain.Without my pain medicine my quality of life is NOT good,yes I DEPEND on my pain medicine because I can do the housework and things I need to do,not pain free but it eases the pain enough I can get up and do things.Without it I can’t do much if anything because the pain is so bad. I have not yet been able to get in with another pain doctor,they have to review your referral to see if they want you as a patient,in the mean time I am in severe pain,I got some Toradol at the emergency room because they will NOT give you norco or any opioid for the pain and they make you feel awful telling you that you are having withdrawals which pisses me off. Doctors are being arrested and they are scared to write a script for pain medicine. Something has got to be done to make them understand chronic pain patients need their pain medicine. And they also need to understand desperate people will turn to the streets to find what they need. People will overdose on street drugs trying to find something for the pain and it’s not always opioids that they overdose on. When people have medical evidence of being in chronic pain there should be no reason they can’t get their pain medicine,point blank period. WHAT CAN WE,CHRONIC PAIN PATIENTS DO TO CHANGE THE LAWS SO WE CAN HAVE A GOOD QUALITY OF LIFE WITHOUT SUFFERING IN PAIN EVERY MINUTE OF EVERYDAY??

treeo

Good Luck. I don’t have a doctor to prescribe me anything and am about to give up hope, been looking for 1 1/2 years.

Kim R Rafter

I live in Arkansas. How can I find out if there’s gonna b one here?

D'nushka

Laurie, they can and will kick you to the curb. It’s going to take years to correct this mess. It’s extremely dangerous to be forced to go cold turkey, but that’s what thousands of people faced, and some people could not and committed suicide. No other Rx or treatment has allowed me to have some kind of life. Maybe if I got proper remedies as soon as I fell, like pro athletes do, I might have had a less painful life.

Terry Ott

Thanks to those who are front and center in this fight. My wife wasn’t able to attend the assembly/protest. She died from cancer a month ago. Cancer represented the escape from pain, allowing her to get enough “palliative care” pain meds in hospice so that she was released the last few days from the central nervous system pain she could no longer bear. My greatest regret in life is that despite all of our efforts we could never break the chronic pain cycle and give her “a real life” in her final decade. My heart aches for all who are afflicted with intractible pain and cannot be assured of treatment that would at the very least make life bearable.

Bill Ewaniuk

I’m living a nightmare because they cutting down my pain meds which I have follow every rules they give us why are you picking on people that follow the rules and need this!! Stop hurting and killing us for follow the rules go after the drug dealers who put this drug in heroin and people shoot it up and die we are not doing this why BECAUSE I NEED MY PAIN PILL TO SURVIVE!!

Gabriel Guidry

The DEA finds it much easier to sit in a comfortable office and pick what doctor or pharmacist to go after. Going after the heroin cartels is more difficult because they have to take risk and face danger.The damage to the legitimate pain patient and doctors is enormous. Add in our useless government and we have a perfect storm. We have to look at protest and lawful assembly to get the word out.

The problem is that we are not able to attend any sort of event like this because we are left in soo much pain that it is out of the question