Chronic Pain Survey Reopened

Chronic Pain Survey Reopened

By Ed Coghlan.

In a week when the DEA announced it is going further reduce the supply of opioids in 2019, a leading chronic pain activist has reopened her survey of chronic pain patients.

Dr. Terri Lewis pointed that while the argument continues to rage between those who want to strangle the supply of opioids and those who argue that only chronic pain patients are being hurt by the reduced supply, no one is really is talking to or about chronic pain patients.

Her survey, which already has attracted more than 2,000 respondents from across the country, is designed to hear what is happening to the chronic pain patients (and their families) in this war on opioids.

“We are finding out that many people are being negatively impacted in this opioid controversy,” she said. “The results of reducing supply are not reducing opioid overdoses or even deaths from overdoses, but it does seem to be hurting chronic pain patients who use the opioid therapy to manage their conditions.”

Need More Rural Response

Dr. Lewis pointed out that she is trying to get at least 30 respondents from each of the 50 states and has mostly attained that goal. Thus far, only rural states like Montana, Wyoming, the Dakotas, Kansas and Nebraska are under the 30 response minimum, so if you live in those states in particular, we urge you to fill out survey.

Here’s a link to the survey.

“We’ve been developing some interesting in-state data that we are sharing with state leaders and chronic pain advocates which can help them make the case that the states need to create their own pain policies that have patients in mind,” she said.

Meanwhile, the DEA is continuing its efforts to restrict access to more commonly prescribed schedule II opioids, including oxycodone, hydrocodone, oxymorphone, hydromorphone, morphine, and fentanyl.

“We’ve lost too many lives to the opioid epidemic and families and communities suffer tragic consequences every day,” said DEA Acting Administrator Uttam Dhillon. “This significant drop in prescriptions by doctors and DEA’s production quota adjustment will continue to reduce the amounts of drugs available for illicit diversion and abuse while ensuring that patients will continue to have access to proper medicine.”
Reducing supply is beginning to reveal the consequences of current regulatory approaches.  Hospitals increasingly report shortages of essential opioids and are resorting to the rationing surgeries, replacing standby medications with less effective alternatives, and implementation of opioid sparing regimens. A recent survey by the American Society of Anesthesiologists (ASA) survey found that 95 percent of those who responded reported that shortages have affected the way they treat their patients.
The top five opioid medications in the shortest supply are hydromorphone(Dilaudid), fentanyl and morphine, the local anesthetic bupivacaine, and the lifesaving allergy drug epinephrine.  Recent efforts by the federal government to curb the opioid crisis — by cutting back on the raw materials used to make opioids — may partly explain why.  Another factor is the delay of production capacity for drug manufacturing plants located in Puerto Rico. 
Notably, many states are reporting that prescriptions are decreasing, overdoses and suicides are increasing, and the drug most correlated to overdoses are heroin and carfentanyl, both imported from abroad.

Authored by: Ed Coghlan

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Stephanie Robbins

I’ve been on opioid meds for over 8 years then the mistake of walking thru pain clinic doors. Eventually they stopped my meds because I dare to question them when they cut me back to far. Today I have a appointment with the Dr for the sole purpose of telling them how they have destroyed my life if you going to do that then you are going to have to look Me in the face!

Jul

Hi Diane. I’m on SUBOXONE. Going on seven years. I also was in 2 serious MVA’s. Long story short, going on 2yrs ago, my psych doc, who rx’d my Xanax 5 year’s earlier, became certified to write for Suboxone. He tells me to ‘choose’ between xanax OR Suboxone. Right? This has been an unbelievable lie told to CPP by CDC, DOCTORS Health Care professionals.
My chronic pain issues were moderated when I was taking opiate medication for 12 years.
Choose? Please.
Yes this organization/site ROCKS!!
THANK YOU!

Diane

My PCP told me he can no longer prescribe my pain meds that he referred me to a suboxone clinic for my pain. The new law he said limits the amount of patients he can write opioids to. So now this suboxone clinic wants me to go off my anxiety meds – you have to pick pain or anxiety ? I live in Pittsburgh and the trying to get help for pain is a joke !! I have had two knee replacement surgeries, was in two car accidents won’t even get into my back problems. I think what you guys are doing is AWESOME.

John McCoy

I’m not so sure this isn’t government website, a couple of hours ago I tried to post a very condensed summary of my experiences over last 40 years dealing with sever pain, jumping through hoops, being treated as a criminal,liar, and I guess guilty as they always like to imply diverting opiates I was called in for pill counts twice in last ten yrs randomly and was right on the money…..please tell me why my comments have not been posted
But instead after initially saying they had been posted and now say “waiting for comments to be modified ” I’m not tech savvy so please explain

John McCoy

I’m 62 years old and for the last 40 years my life has been a living hell, I have sustained one injury after another, in the early eighties while at a job site, I fell 45 feet breaking several bones and numerous spinal fractures requiring many surgeries, and the hits kept coming over the next four decades I lost count of the number of times I was hospitalized for weeks at a time and I stopped counting major surgeries at 28, there were many more, body parts replaced, and those replaced, and then some of those replaced, my last two hip replacements I nearly bled out on the operating tables, been on life support, couple comma’s and on two different occasions my family was told I most likely wouldn’t survive the night and that doesn’t even get too my complete facial reconstruction I’ll spare you the details and between all that always maintained employment and raised a daughter with no help from anyone. While I may have had a few scrapes with the law it all minor stuff, fighting I might have been disorderly once or twice, but I’m no criminal but you would never believe that if you were near me when I get my prescription filled, I’m treated like a mass murderer and junkie, when the clerk takes my prescriptions she screams ” instant release oxycodone and that methadone ” and it always seems someone will say I heard of that and someone behind the counter will say the use it to wean THEM off heroin, I’ve learned these days no matter what wrong going to emergency room is an exercise in futility you will automatically be labeled a drug addict, I’m tired, hurt like I can’t describe and I’m miserable. They struck upon the combination of those two drugs in 1999 after coming out of coma, my pain was so bad the doctors put me back into medically induced coma for fear I’d have a stroke, but this turns out to be responsible for the best years of my pathetic life, from the time I got out of hospital in early 2000 until the CDC come out with their prescribing guidelines sometime in 2016, I had some quality of life, still suffering but was raising my grandson which I loved doing, he is my everything, and until that drs visit after CDC GL had meds that gave me enough relief that kept me from going crazy. Then that drs visit where he cut my meds by 3/4 and terminated me on my return visit because I had beer in my system (self medicating) not a day since I haven’t asked the lord to please end this and put me out my misery, my daughter has her life on track now, so maybe

Will you help?

The links below will tell you 100% the CDC and FDA have covered up everything about this opioid epidemic.

What if everything you know about this epidemic was based on inaccurate information.

In this article by USA Today the FDA admits the they inflated the number of overdose deaths from prescription pain medication by 52%.
https://www.usatoday.com/videos/news/politics/2018/07/02/fda-chief-says-long-term-opioid-prescriptions-needed-some-chronic-pain-patients/752552002/The article said nothing about the audit the CDC did in 2017. The audit was done 2017, submitted 12-2017 and posted 4-2018 by the FDA. If you click on the 2nd link the new numbers by the CDC after the audit.
https://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2017.304265?journalCode=ajph
This is the first page, I got all 3 online at my local library.
Please pay close attention to the dates.

The CDC released this on 9-12-2016, 4 months AFTER the CDC released the bogus 2016 overdose death numbers by any opioid. No leak between prescription pain medication (oxy,morphine) and illicit street drugs (fentanyl,heroin)
https://onlinelibrary.wiley.com/doi/full/10.1002/adaw.30696

A little bit more information.
These links are the real time death for 2016, 2017, and 2018
2016 cause close of death January through June. Look at prescription pain medication.
https://www.snopes.com/fact-check/causes-of-death-2016/
2017 real time cause of death 1-2018. look at prescription medication.
CDC reported over 70,000 deaths by opioid.
https://www.rallypoint.com/shared-links/2017-real-time-death-statistics-in-america–2018
2018 from 1-1-2018 through today
https://www.romans322.com/daily-death-rate-statistics.php

Brett H

The Government doesn’t want to do anything about Heroin and Fentanyl .It is their means of killing us off by denying their pain. I have 10 things wrong with me and any and every day I think about dying. Yet the best the medical community can do is say I need to live with it? KMA! You think that someone this screwed up wants to continue beong beat up by pain daily and is scared of the effects of.that medication? Dependant does not mean addicted. Nor does it mean opioids are going to be the death of us. I have been on opioid therapy for 8 years. I noticed my body kept needing more oxy every 3 months. So I educated myself on Fibromyalgia and noticed someone said Fibromyalgia is better covered with Methadone so I made the switch with my doctor and quit Oxycontin ER myself cold turkey no problem. Then Methadone takes a week to start working and this is were most of the OD’s happen. Patient needing relief in between pops more than the prescription and dies. But the constant barrage from the Government of fake news they keep pushing out on Opioids is pretty ignorant. It is very apparent that the 90 MME chart is all about saving the Insurance Lobby money, as soon as the ink dried on that message of Stupidity from Andrew Kolondy the Insurance lobby was forcing many of us to pay cash for our pain meds because they demanded monthly preauths from our doctors. Where do you find an extra 500 hours in your practice, they just refused to sign any of them.

This needs to end, we need to be medicated. And for some of us physical therapy will never work again. Because we are broken. And if you make us live with the pain then legalize euthenasia so I can go die on the steps of the CDC much like when Edgar G Robinson died in Soylent Green.

elgie swift

Need to correct a misleading statement in my first comment. Opioids are also physically addicting and symptoms will vary depending on dosage. Doctors should by law allow a taper
to avoid these flu like symptoms. But it still comes no where close to alcohol withdrawal for a heavy user who is addicted and not under medical supervision which can cause death. There are also deaths caused by binge drinking, inhaling your own vomit, falling down stairs, diving into empty pools, stupidity, car accidents which kill the innocent too, and the slower issues such as heart disease, dementia, pancreatitis and liver failure. These diseases and add tobacco, cost our country huge amounts of money every year. Fight these problems and leave chronic pain patients alone.

elgie swift

I am in pain management and have been on the same dose of opioids since 2013. It still works for me, and if I have a rare good day, I will skip a dose whenever possible in an attempt to keep my tolerance from building. (CRPS, full body and now pseudo gout). I also spent 20 years as an ICU and ER RN at a teaching hospital and Level 1 trauma center. I knew the importance of keeping my patients pain free for recovery and to prevent senseless suffering.

It is horrifying that they are now teaching medical students and residents to “hold off” on giving these necessary drugs. An entire generation of doctors and nurses are being taught keeping patients adequately comfortable following surgery or a trauma is no longer needed. I wonder how many cases of pneumonia from patients unable to take a deep breath, or blood clots formed from the pain of moving and getting out of bed, so they avoid it, are occurring. Patients can do these things after a dose of pain meds, and that includes after going home. Perhaps after multiple lawsuits from preventable pneumonia or deaths from a blood clot to the lungs will wake a few of these doctors up, but it will probably be blamed on the patient for not complying, and nothing said as to why they cannot comply.

Every single day with few exceptions, I would see alcohol abuse and the destruction it would have on a body. People die daily from drinking too much yet there is no limit on how much alcohol someone can buy at any time. I’ve seen young kids who drank a fatal dose, 30 y/o’s who’ve already turned orange (like a pumpkin) and have livers that are so large if the ascites (extra liquid built up in the abdomen) has been recently drained, one can see the outline of the liver below the ribs. Excessive alcohol also destroys the brain, heart, pancreas… and is PHYSICALLY addicting, meaning the withdrawals from alcohol can cause seizures and death, unlike withdrawals from opioids which is just like having a terrible case of the flu, with the exception of heroin.

My doctor who is fighting for legalizing marijuana and for protecting those of us in chronic pain told me that only 4% of those who take opioids for over a week could have problems with addiction. 4% who are also the ones who will abuse alcohol, tobacco, and everything else they come across. So for 4%, the rest of America must be punished no matter what their situation. This has to stop.

Jay

Sonnie,
Your in healthcare….what housekeeping?? Seriously I wish I was an addict because when all the pain meds are taken away and the withdrawals are gone. I’d be healed but guess what Sonnie,
THE PAIN WILL STILL BE THERE ×3. Us pain patients will still be suffering!! most of us don’t even have the money to do other alternatives because our meds were taken away so we can’t work anymore is any of this getting through your thick head. I’m sorry but I get so angry listening to these people sitting on their pedestal and judging us chronic pain patients. none of us want to be a chronic pain patient. Most are from accidents. From work, cars and mainly from doctors that botch surgeries. Like me. I will admit that doctors was giving out too many pills and I feel better being weaned down, but a few to get by is neccessary. Each case should be treated individually. Until insurances start recognizing alternative ways to handle pain management and helps pay for it the pain pills are the most simplest solution for most patients. Hopefully Sonnie you or someone that you love never has to suffer like we do.

dis may

My life has experienced multiple serious outcomes since my dosage of oxycodone forcibly slashed in half, 2 years ago. I was winding down from a poster-child display of of the consequences of child abuse onset aged 18 moths until 18 years. This relentless abuse and neglect was triggered in cancer surgery, when I returned to consciousness with PTSD. I’d no notion such a thing possible. I inferred my symptoms from the quite unusual responses people had to my personality. I did lit reviews and arrived at the PTSD diagnosis. Next I scheduled interviews with the leading specialists in trauma injuries, the diagnosis confirmed by each, and Bessell van den Kolk went further, be concurred and found a local specialist who saved my life. The 1-3 days each week, depending upon contingencies as surgeries, automobile mishaps (I refuse to call being overcome in flood waters, directed into the sluice roads become, as an accident! How absurd. But it totaled my car as it re-injured the arm, shoulder, cervical and thoracic pain extending from neck to upper arm. I was already in rehab for the injury.
That is merely the latest, not the greatest somatic expression of such early onset of abuse and neglect, all of which flooded back with the PTSD. My pain, properly covered resulted in significant progress, stabilization and unprecedented creativity in my work as a psychotherapist. Now I can barely construct a sentence, my life roiling in pain, unpredictability and utter dismay. SO much to live for, so much to die for at present.
My masters in workplace organizations and addictive disorders quite surprisingly led to the discovery that the criminalization of opioids and cocaine, 1914, 1915, were designed to keep unwanted racial immigrants out of the workplace. NOW who are the targets? Older women (white) in chronic pain and people of lower socioeconomic status. Surprised? You would be if you subject yourself to broadcast bandwidth. Goebbels is nothing compared to the significant advance of the delivery systems of propaganda. Be not surprised that the poorest household has a television set.
There is a VERY big story to tell here. Can I tell it? Not if I am killed off before I can tell it. I have a drive to live as never before. And I am fighting for my life. Please hep me! Please direct me to someone who can authenticate the three features of my body that render me powerless in the face of this current environment of killing the people, like me, who know the story.

Loretta Cody

The same ones who are, carrying us chronic pain patients through hell, have they, thought about themselves, in Our shape one day!

Tim Bowman

All i can say i wish you was in my shoe and let you spend all your money on pain so the pain pill must stop just because drug addiction then you better come up with something before you do this

Onefeather

This is wrong on so many levels, government has no business telling Doctors or people what they can take or do when it comes to medicine, maybe all who need their pain medicine can come together in singing a pettion and maybe we all can do some research about finding lawyers who will take this subject on. If Trump jand government cared so Much about Drug s in this country then why are they NOT going after what one can buy on the streets, and why aren’t they doing something about the Drug Dealers. This is what a communist country does, we all need to take a stand and know your rights and freedom.

Charlet Nubile

After 6 years with my pain management doctor I was abruptly dismissed without notice without meds and one hour before closing on a Friday. I have not violated my pain contract. No lost meds. No ER visits. Proper urine tests. I was sent into withdrawal and out of control pain. Until I could see my primary doctor my choices were SUFFER. Why is there no news coverage on WITHDRAWL? No coverage on being abandoned by pain doctors? I want to keep working and support myself. Have a quality of life that is minimal. Not trying to be pro athlete or an extreme sports junkie. Just tying to work and pay my bills. HEROIN and illegal FENTENAL laced drugs are NOT PART OF THE OPIOID CRISIS. The news and medical professionals need to SPEREATE the HEROIN/FENTANYL deaths from the OPIOID crisis. Please STOP lumping chronic pain patients who are doing things correctly and GET THE POLITICIANS out of my doctor appointments. The NEWS that represents the OPIOID crisis in a dramatic paper selling way needs to come clean and be honest about its reporting of HEROIN AND FENTANYL deaths

Craig

Over 70% of the deaths are synthetic opioids with fentinal mixed in. And of the deaths several are Vets that were taken off opioids for chronic pain with no alternative. All because the hysteria of the medical community that opioids monitored by doctors could kill without taking in consideration that chronic pain can lead to suicide when doctors abandon those in need. I’m told to choose effect of PTSD which I take meds for or pain from chronic problems for which I take opioids but have to try and live with pain from muscle spasms and neuropathy which is at times intolerable. As 100% Disabled Vet I am allowed two visit which I usually get one a year to my primary Dr. I’m allowed one cardiac visit a year but have been waiting 16 years after my first heart attack to get my first visit. I’m told also I have fibermyalgia but gamapentin was a bust as was pregamatine. Pain specialist tell me they can do nothing for my pain. This is why we have deaths. People seek relief from street drugs for pain. In Seattle they make illegal drug shootout sites but ignore those who need help with pain. The VA gives the Vets drugs from the low bidders by doctors that never physically touch you to examine you. I am also an Agent Orange victim. Which has damaged my heart kidneys prostrate and nerves as well as arthritis. I know drugs are not good, all are poison, but rather than sit in pain I would like to live the remainder of my life on my feet with pain controlled rather than sitting rocking due to hurting knowing the VA dose not really care nor do the doctors at WVC confluence. When I told Fowler I was a disabled Vet, he said “so you say” well I am doc, and you claim to be a doctor, so you say!
I would give up all meds if the pain could be lowered to a 4 or 5

Danielle

Ban Fentanyl and Problem SOLVED. NO ONE has ever died from taking 4 Vicodin a day.

Danielle

I do not understand this. People are overdosing and dying because of fentanyl, used in Heroin! I’ve never heard of a chronic pain patient taking 4 Vicodin a day and dying. Ban Fentanyl and Problem SOLVED.

Cynthia

I am looking at surgery for blocked kidneys but I am screwed now because I refuse to do it without narcotic pain medications this is ridiculous that the DEA is doing this smacks of discrimination and genocide! What am I supposed to do now? Just let my kidneys die? These old farts need to be fired for such insanity they know next to zero about chronic pain and what it does to your brain & body over time!
But then again, all they care about is power and money…typical and sickening & then they act like they are doing us all some kind of favor arrogant old men teaching the new how to treat us “Do no harm” by doing JUST THAT. Kill us with NSAIDS which eats holes in your stomach if I have any more my GI MD thinks
it likely they will cause my death

Teresa Cathcart

The only thing the reduction in opoids is doing is increasing heroin use and overdose. Some of the chronic pain patients who NEED these meds have taken to using heroin as a substitute causing more overdoses from heroin. Also many people have committed suicide because they CANNOT stand the horrible pain they have to live with now. Someone very close to me has been talking about suicide because of the pain. Not only are the patients affected, also their families are being negatively affected. Try to watch a lived one in unbearable pain, with no relief BECAUSE THE GOVERNMENT thinks they know who needs what medications. The doctors and patients are the only people who know what they need to be able to live a close to normal life. Without these medications they CANNOT live without unbearable pain, causing their quality of life to be horrible. Shame on the people who know NOTHING but are ruining countless lives, both patients and families!!!

Jill

Hi Sonnie. Perhaps you are affiliated with a rehab facility, I don’t know, but I can tell you’re young and have never experiences say 30 years of an incurable disease. I worked for 32 years in medicine, and would advise you not to believe every thing you read. Especially many flawed studies done by doctors with skin in the game. We are dependent on pain meds for quality of life issues but our issues off of them do not come from withdrawal but from the cause of our untreated pain. Please contact me at mccoyjill2004@yahoo.com if you would like a better understanding of the reality of chronic pain patients. You seem sincere in your sympathy, which is nice.

Sonnie
You have no idea what you are talking about. Don’t care if you have an education. Hope you NEVER get visceral intractable unrelenting pain. Yes our bodies are dependent just like those wonderful anti depressants and adderall that they pass out like candy. But there is a difference between the withdrawal and your pain. Sorry, but you don’t know what you are talking about.

Pray to God you don’t get a painful auto immune disease or some horrible injury. Stay out of our lives government and those that think they know it all and let the doctor treat patients humanely.

Physical Therapy vs Opioid epidemic

Tina R. Cox

As a RN and patient with debilitating pain, I have to throw my two cents in. I was injured lifting a patient over 30 years ago. I have had multiple surgeries, procedures, and taken many medications for my constant, intractable pain. Without pain meds, I will be incapacitated. The opoid situation has gotten out of hand due to physicians prescribing opoids for sprains, stains, etc., instead of prescribing anti inflammatory meds. I tried to work in a cast for 2 years with NO pain meds. It’s essential that other treatment modalities be used for acute pain rather than opoids as first choice for treatment. Decreasing the ability to receive medication prescribed will cause many patients to become desperate, frustrated, and can actually worsen their condition. It definitely will cause mobility issues for me if I don’t have the proper prescribed pain med. It’s important to remember there are many people who actually need opoids to become and stay active.

Cheryl Stahl

I feel for people who are going through this. I don’t have severe or chronic pain, but if I did, I would have to ask myself 1. Can I live ok without meds? 2. If the answer is no, then I should have the right to use opioids so I could at least maintain and be with my loved ones. 3. If I am denied medications to alleve my pain, and opiods were the only option to do so, would I want to continue to live in extreme pain for the rest of my life? And finally, would this pain without relief eventually make me consider suicide? I would rather have relief from opioids than to to kill myself because I couldn’t bear it anymore.
I’d rather be alive and coping than offing myself, which in my inner belief is a major sin against the life given to us. Not only is this a physical dilemma, but an inner moral one for many struggling to cope with pain and their spiritual values.

We need a compromise, and for now, cutting these people off, is not a compromise.

Janet

I have been a chronic pain sufferer since 1991 I have scoliosis degenerative disc disease osteoarthritis rheumatoid arthritis and fibromyalgia also two herniated discs with the cutbacks on my medication I find it hard to even do daily chores let alone take care of myself I feel like a burden on my family I am the definition of chronic pain the CDC FDA the lawmakers have no clue what it’s like to live with chronic pain I depend on my medications to get out of my bed in the morning and it’s getting harder and harder to have any kind of a normal life before the opiate epidemic I could get out of my bed with ease do dishes wash my clothes get a shower take care of my dogs I feel like collateral damage from the opiate epidemic it’s cruel and inhumane what the CDC FDA Etc is doing to a true chronic pain patient I have had physical therapy injections Etc and the only thing that helps my pain are my medications

Denise Bault

Sonnie, the long term benefits do exist for chronic pain patients. It keeps us from killing ourselves. It also makes a day tolerable. One day you may need it!

Connie Weissbeck

I THINK DR.S COULD
EXAM INE PEOPLE THAT ABSOLUTELY NEED MEDICONE FOR PAIN SHOULD HAVE THEM.
I FELL AND HUT MY BACK THE
CHORONIC PAIN Cused my book pressure to spike.
After seeing pain manage ment
Had steroid injections BP back to normal but still some pain like having a bad toothache all
Day long. From the fall and hurting m yuh back.
Arthritis. Has started.
Not fun at all .it makes life
A hardship
CJW

Toni

I want to say that the state of Oregon is trying to take away all of these drugs from medicade partents. This is not me put afraid if it happen it could affects others insurance company.
I am on 1 of these drugs on as needed bases for degrenative disc disease, pinch nerves also bone spurs.
I get so tried of hearing the negative part of these drugs. Yes people do abuse them but there are people can’t get out of bed and function half way like a normal without of them.
Some days with the pain in my neck, i can’t even lift my neck off my pillow with out help of these medicine. I only give into these meds when things are really bad.
Also people need to releize my pain is different from anybody elses pain. I have no right to judge others pain. When i go to dr i am there for whatever releif they can offer within reason. The Problem is medicare insurance only pay so much. Will be checking into injection to see if they will pay for them… If not the meds is the only relief i have at this time.
Time dose not premit for me to say everything i feel about this subject but taking all these drugs away is not the anwer.

Jessica Reible

No one, unless they have felt chronic pain, can understand & comprehend chronic pain and what it does to you.

So sad, I wish chronic pain on my PCP… who suggested I should “take a walk” (as the CDC guidelines suggest) when I feel pain. LOL!

I feel horrible for wishing chronic pain on anyone. However, that man needs a reality check.

Jessica Reible

I would like to say a few things.
This “opioid epidemic” with skewed statistical numbers on prescribed opioids, incompetent & ignorant doctors…has gone too far!

I am a chronic pain patient. This has affected me personally & also affected my family, who do not have chronic pain.

Besides myself, my husband & son have had to deal with the results of the CDC guidelines & interference of the DEA on opioid manufacturers.

My son, who broke his leg, was denied any sort of opioid 6 days after a broken leg. The doctor was “uncomfortable” prescribing any pain meds beyond 6 days. Because (and this is her exact comment) “young boys get a taste for this sort of drug & he could become addicted”. So my son, age 15, was left to be in pain.

Most recently, my husband, who was diagnosed with Crohn’s disease almost 30 years ago. Had a sudden excruciating flare 2 wks. ago. I had never seen him in this much pain. I was concerned, as I rushed him to the ER, that his intestines would rupture. The last time this happened they had to remove a portion of his intestines. He has had 2 resections in 30 years. Only after blood tests, discussing symptoms with a doctor/exam, and full review of his medical history… he was given duladid through IV. It did nothing for his pain at all. I asked the nurse what dosage & strength she was giving him. She explained that there was a shortage of opioid IV pain meds in the hospital & she was limited to what she could give to him. WHAT?! I was so angry. This again was because of our government! He did get more as time went on. He struggled until his 5th IV injection of duladid (when it finally took the edge off the pain). He had to suffer 1 hr. 40 min., after they decided he was worthy of pain meds, the total allocated time period for each small dose of duladid allowed due to the shortage. His only medication is 1 shot of Humira every 2 wks. to keep his Crohns disease at bay.

This made me wonder what would happen if me or anyone else would need to have surgery right now?? How would post operative pain be managed? or are they just going to allow people to sit in their pain? Obviously after care is going to include a very low dosage of pain meds over a very short number of days. How cruel & disgusting is this?

Do “the rule makers” not realize how chronic pain patients are ending up with heart disease due to high blood pressure over long periods of unrelentless pain?

John may

This has been a very hard blog to read, as I’m struck with fear of whats to come. I’m only 37 yet I’m am scared to death of whats to come of my life and future. For the last 12 years ive suffered from a debilitating medical disease that has led me through years of bad surgeries and dead ends. About 5 years ago I was told there was nothing more that could be done as my condition was inevitably going to worsen. And the focal point switched from fixing my body to focusing on quality of life. I began pain management and it was rough to begin with but having found a man named doctor eidleman I was given a second chance at a somewhat sustainable life. Point injections and nerve blocks combo with medication gave me a sense of being alive again and allow me to moderate and maneuver through a pain ridden lifestyle. Although I still work through alot of uncontrolled pain I have the will and ability to do so with the help of these powerful medications. Sadly this I fear will be coming to a crossroad soon as I have been pulled back 2 pills a day of my instant release and am being encouraged to try to navigate my pain with one less er med as well. I was told it was a recommendation of practice issued from above in hopes to lower the risk of the federal goverment making changes to policy at the pain management group I am affiliated with. It has effected me by limiting my ability to gain relief from my body and minds ailments continuously and forcing me to have to make a decision of which part of the day I am willing to suffer the most. I am managing as I am very familar with pain although it is more acute now at times leaving me helpless. But I know I have what I need to bypass the symptoms at a later time so I suffer a little more than before. However I live in complete and utter fear for my future and what the quality of life my life has in store for me . Ive handed it over to my maker as I have done daily for the last 12 years. I dont know what I will do if faced with not having the option to find relief through medication. Its a daunting thought in itself. My brain has opened new pathways that allow me to handle and cope with violent pain through medication. Not only is it my lifeline its the only way I make sense of living with pain the way I still do. This is far from a black or white wrong or right subject. As to put a blanket rule of fix on this topic cant possibly fix or find a fair solution. Ultimately I pray the day never comes where I’m left without a choice

Im a chronic pain suffer I’ve been on 5 MLg an 10mlg IT WOULD NEVER LEAD ME TO A NEEDLE THE MEDIA HAS BLOWN THIS OUT OF CONTROL I EVEN TRYED TO SET THE RECORD STRIGHT WITH CHANNEL 7 NEWS IN DENVER HE TURNED ON ME AN FALSE REPORED I AM A VOICE OF THE PEOPLE IVE TRYED TO GO TO CONGRESSMEN MIKE COFFMAN. TO FIGHT FOR OUR SIDE. IF I CAN JUST GET THE RIGHT DOOR OPEN. I WOULD CALL OUT ALL MEDIA. REPPRESENTATIVES TO SHOW THE FACTS. ITS HERON AN FENTAL THE HEAD OF DENVER POLICE UNION EVEN CONFIRMED IT

Carol

I have been going to pain management for 7.5 years for AVN (avascular necrosis) and 3 herniated discs in my lower back. I’ve already had both knees totally replaced but still suffer great pain on a daily basis. Its excruciating pain. Somedays I can’t even walk to the bathroom in my bedroom!
I have been on oxycodone 30″s for 3 years and now suddenly degraded down to 3 percacets 3x a day and next visit he will reduce down to 2 a day. I don’t care to be bed ridding for the rest of my life! I have 8 grandkids that would love for me to spend more time with. I miss my walks on the beach, working in garden and much more. Since this new law on opioids came out, it’s been a nightmare! I find it unfair for those who truly need opioids for pain are the ones that are suffering. I have tried other pain medicine but they don’t work for me. The Morphine I couldn’t tolerate because I stopped urinating. My point is, maybe screen patients on their needs better, and those who can’t take anything else but opioids by God give it to them! I don’t do street drugs but some days feel so much pain that the idea has crossed my mind, knowing that I will be cut out of pain meds in the near future! I already spend 75% of my life in bed as it is. I suffer great depression because I used to be so active. Now I gimp and walk with a cane when I do get up. This is NO way to live! I feel like I am being punished for something I didn’t do! The suicide rate with climb and so with the overdoses because when you’re in that much pain you’ll feel desperate to get relief!

Anne

We are replacing overdosing with suicide.

Wendy Brigham

These politicians need to all experience pain.

a curse on them all

Kelly

Yes

Tay

https://www.webmd.com/pain-management/guide/pain-management-arachnoiditis#1

Anyone with chronic pain after back injury/ surgery needs to ask for a spinal MRI with AND without contrast. There is a severe pain causing disease called arachnoiditis, that is only seen with this type of MRI. The symptoms are Severe Burning pain, odd sensations like bugs crawling on you. It is considered a “rare disease” only because it is not looked for.Importantly a person with arachnoiditis should NOT have ESI or implanted devices. Please look into it as it may change your life.

Joy Chapman

Street Fentanyl and Heroin are responsible for very most drug deaths now. While the government and media lump together opiods, the need for clarification becomes greater. When someone goes to the doctor with pain issues now, the doctor is unconcerned with pain and documents that the patient is drug seeking. It has turned into an uncaring situation for chronic pain patients.

Allen

pain med. causes more problems down the line . down the line.
years from now you might have to take more or stronger doses.
years from now.
Today I am 47 was a 25 year chronic pain patient not once rushed to ER for overdose never once lost med. never once had failed 1000.00 dollar scam DRUG screens not misprint the same urinalysis the local lab at hospital charged 100.00+- a urinalysis company took over and charged up to and over 1000.00 dollars depending on the ins. coverage you had. It’s always for the good of the people I am lost on this one I can truthfully say I would not be here today if not for pain medication and getting back to the start what might happen down the line or years from now well I can speak for a lot of us we might not be around when the miracle of pain relief w/o opiates is discovered it will eventually happen I just hope the people that believe they have the ability to speak or make decisions for pain patients that themselves at most know after surgery pain which compared to the everyday year after year crying in bed no help to anyone , what’s the point of going
on and 9 on a pain scale of 10 and know if not for a non-medical doctor or expert I could be helping at something and 2 or 3 on the scale of pain but clearly me and my millions of chronic pain compatriots don’t understand pain like a educated pain expert were just actual pain experts.
Overheard many times recently if another government was doing this making people suffer by withholding the cure to the suffering the past USA would would have helped the suffering.

Ellen

One last quick comment
For Terry Lewis I will again fill out the survey you wrote ; you are trying help us but is it true what I read that the FDA has not read or did not read the surveys previously done and plan not to read our comments? Thank you
Also thank you and bless you Dr Forest Tennant you were also a chronic pain warrior, helping so many and treated unfairly You did nothing to deserve what I read was a raid on your home and office while on vacation
I am sorry ,enjoy your retirement

Ellen

I started one earlier but could not finish due to the dystonia pain in my hands. DEA has no right to cut opiates when cannibais is not legal federal level and it has become state and opiates should be same everywhere I can not leave my wonderful neurologist but I also can not move to cheaper state because of opiate rules are not making since Tell people get consult has become see only specialist if at certain dose but DEA hassles them for writing so many prescription opiates
American with disabilities act which many feel this comes under
Is overseen by federal attorney general office and who is the head attorney general Jeff Sessions who said chronic pain patients need take “2 Bufferin go to bed and quit whining” Some say you have learn live with it I want to scream Tylenal says as does Advil for MINOR aches Chronic pain patients are dealing with serious pain that requires opiates and I have dystonia and opiates and benzodiazepines are medically appropriate My neurologist wrote a letter to let pain specialist be informed his use of benzodiazepines is medically appropriate therapy with their RX opiates I have a form that responses to all Parkinson meds and I have Parkinson like symptoms severe slowness ( bradykinesia) and the high heat temps have still caused my left side esp to barely move requiring extra steroids ( intravenous decadron twice had be doubled and put on oral methylprednisolone packs) The Sinemet triggers central dopamine receptors ( I make dopamine but a enzyme pathway stops it from being used how UCLA specialist explained it) but it triggers peripheral dopamine receptors that sets off horrible migraines and vomiting I can’t take IM Benadryl too many over years despite rotating sites scar tissue and abscess led two surgeries
I could go on you folks are suffering too Who would want take medications that I finally can not drive , dry mouth causes cavities if not careful but pain from legs or inability move or talk clearly My neck tightens and pain when it locks is dreadful Botox did not help but I cough and choke already I have two beautiful daughters husband too selfish to want me anymore he is an RN and gavenup I have pets rescued I want to live I see therapist weekly if I loose my meds I won’t be able tolerate it I am scared sad I just like all you want function enough
UW docs started this should loose their licenses All people helped on same doses for years are not getting addicted Addiction is emotional need leads steal etc

Roberta

It is quite obvious the GOVERNMENT is doing this to the poor and disabled to get rid of us. And it is evil and SICK. why wont any lawyers help us?Or anyone big help to organize Thousands of people protesting?Nobody is speaking up and its ridiculous.

Susan Thomas

I have had very painful Fibromyalgia since served in military overseas, carpal tunnel, arthritis in several joints.
Can’t sleep more an hour unless pain relief with either Tylenol#3 or Hydrocodone. 4-5 a day. Not even overdose level. 8 of those a day not overdose.
Had a severe reaction to Gabapentin (as MD tried vs. Opoid) severe colon spasms for 2 weeks, went to Convient Care-NPC stated several + tests for Appendicitis as clon so sore, sent to ER NPC, almost condescending, not taken seriously- use warm pad.
I din’t get high, not addicted- for it to take for hours & suddenly realize so sore…yet now treated as if a scorned addict by many .
Served several years in military & 20 years a nurse, but now scorned & in great pain. Thanks DEA!
I really feel for hurting elderly who are ignored & in pain. My dad died last year & severe pain for months, he would look to me with tears in his eyes & helplessness & I would repeatedly have to fight for him to get relief . I think treating people like this is horrible!
Yet, since states can get a nice cut from selling Marijuana & taxes if alcohol that’s ok …when know about drunk driving & drug intoxication. Really!

Responding to SONNIE, first even though you work in the healthcare field. Like I have most of my life. What you’re saying only makes sense to a point. Sometimes a patient needs pain medication a short time, a surgery or short illness ,etc. and another time a patient has a disease or an injury where they are needed a bit longer and then like you say finding other solutions to deal with your pain like ” pain management clinics”etc, is better than staying on the pain meds But sometimes a patient has a lifetime disease or severe chronic pain that last a lifetime and those so-called other pain Management’s don’t work alone you need medications along with that and yes sometimes that means a lifetime which you need medications, maybe adjusting levels but you would not be able to function in life or deal with the pain in those situations without continued medication. so don’t lump everybody together in what you’re saying because you work in the quote health field and one more thing. In regards to pain medication if you have pain in your body and you take an opioid it goes to the pain, so it’s not that you want the pain medication because the pain you really have is experiencing withdrawal but it’s because you’re in REAL severe pain. Also if you take the opioid medication and you’re not in pain you get a that super high, that’s why they take it. If your in alot of pain it goes to your pain. Thats been proven. So there’s a huge difference. So again please don’t lump everyone together when you say “they should only be on it for short time and then find some other way to deal with your pain” Are you a doctor? Sorry for the sarcasm and I know that’s not what you wanted to hear but that’s the best solution for you.

Alesha Alonso

I’ve have scoliosis, neuropathy, full blown arthritis in my entire spine, (in the words of my Dr, I have the spine of someone in their 80’s, and I’m 38) I need 2 knee replacements (like a few years ago), osteoporosis, osteoarthritis, DDD, fibromyalgia, and the list goes on for several more miles. I’ve begged my pain management Dr for something else other than what I’m taking because it doesn’t do anything for my pain. I wake up in the middle of the name ght, drawed up, cramped up, and can barely get out of bed. I’m told because of all this new law bullshit, I can’t get anything else. But the junkies, (and you can tell who a junkie is compared to someone with actual pain) get 190 hrydos a month, patches, other pain pills, and I get some damn tic-tacs. So I’m stuck here in so much pain, AND yes, suicide has crossed my mind many times because of being in pain 24/7, from the time I wake up till the time I go to bed. Buckle down on the junkies and we’ve got the files from all the way back in 1946, stating we have an actual need and actual real pain.

I think the whole thing ,especially with the news media reporting, is unbelievably irresponsible and cruel. To say there is a opioid crisis, when back in the 70’s the reduction of those medications left cancer patients way under treated and suffering, and now that ban has been lifted so RESPONSIBLE doctors can treat patuents as individuals with their history and chronic pain levels all looked at in making decisions for each patient, and that most patients follow there doctors orders is good medicine. What the so called epidemic report doesnt tell you is how much of that opiod abuse is 1- street drug abuse mixed with other drugs, 2. someone stealing anothers prescription meds, etc. Most patients who have chronic severe pain, or cancer patients DONT, I REPEAT DONT want to get their medications to abuse them!! but to have a chance at living a more tortured feee life with a CHANCE at a more nornal quality life!!! So because of the crappy ones in charge of regulating this so called new “crisis” I say DON’T take a FEW instances and apply that falsely in your reports and just hapoen to leave out the DETAILS of where and why there us a opiod crisis. And if there are sone Doctors abusing there treatment of patients, then we have laws to enforce on thise few, but to 1. Now put fear into ALL doctors to not be DOCTORS and allow them to treat patients properly and according to their oaths of alleviating pain and suffering when done responsibly AND 2. punish EVERYONE who now will suffer greatly, including CHILDREN is absolutely unforgivable!! And for those if you who dont hear a word of what Im saying, please dont respond with” theres a crisis dumby” before you do any research of where that crisis is like I said, and DONT rely ONLY on the news media , as true research! Until you have chronic pain, and want only to have a bit more ability to function outside of a bed because of pain, you wont truely understand how terrible it is for a Dr to not treat a patient responsibly but with relief needed.

Valerie

I live in Arkansas. My medicine has been cut down due to this horrific action to cut down on opoids! On the pain scale of 1-10, 10 being the worst, I am now living on an eight. I can’t function due to the pain I am feeling. I can no longer go anywhere except to Doctor appointments. My depression has gone from small to where I think that I can’t live like this the rest of my life. I have a lot of diseases that are pain related. I no longer enjoy anything that I use to. I no longer have a life! I am starting to think about death and not being to in so much pain! I understand why people are taking their own lives. I have Fibromyalgia, Neuropathy, RHUMITOID and Osteoarthritis, 5 bulging disk and just recently just coughed and fractured my back in two places and didn’t get any extra pain medicines! We who are in so much pain and can be documented should have the right to medication to help us have a halfway decent life like we had before the Government took away our lives! The pain I am in has me in bed now most of the day! I have to have nurses aids everyday now. How much life is that? This cutting our opoids will just raise the suicide rate if it hasn’t already. I understand why. How horrific is this? What kind of life do we have? None!!!
I’m in to much pain to have any part of life!
Why do we, the people who can document our diseases have to be cut down so much that we no longer feel like living like this? People are dying more and more due to this opoids cut back!
I wish the Doctors that are doing this live my life for a week then tell me that I need my medicine need to be cut back! Shame on them that all a sudden take away the meds that made our lives liveable. I have talked to other real pain patients like myself and they feel the same as I do!
How many of us have to take our own lives to have someone stand up for us?
Thank you for letting me share what kind of life I don’t have anymore!!!

Frank

I was in pain management in where I live now my pain clinic has closed in April but in my condition I’ve got a collapse left ankle and 3 weeks ago I had my right pinky toe and metacarpal bone removed

Pain medicine is not the problem!! They need to focus on METH and HERION! I’ve been on pain medicine for years! And have never abused them. I’ve had 4 major back sugeries and the pain medicine really helps me get through the day. Without it I can hardly function. Wish the Goverment would focus on what is really killing people!