Opioid Trials Begin – What Do They Mean for Chronic Pain?

Opioid Trials Begin – What Do They Mean for Chronic Pain?

As the opioid trials kick off, one might wonder what the impact on chronic pain patient will be.

The opening media coverage does not portend good things.

As CNBC reported: “A trial that kicked off in Norman, Oklahoma, on Tuesday will provide an unprecedented examination of how the country spiraled into a devastating opioid epidemic — and could indicate to what degree drug companies accused of fueling the crisis will be held responsible in hundreds of other lawsuits still pending across the country.”

As Politico reported: “The Oklahoma trial, which is being broadcast online, is expected to last for much of the summer, drawing renewed attention to a health crisis that is still claiming 130 U.S. lives a day. The testimony will focus on how much manufacturers of highly addictive painkillers are to blame for getting patients hooked on opioids through misleading medical claims and aggressive marketing practices.”

The Oklahoma case against Johnson and Johnson comes after the state has negotiated settlements with Purdue for $270-million and Teva, the Israeli generic manufacturers, for $85 million which left J&J as the only defendant in the nonjury trial before Cleveland District Judge Thad Balkman.

J&J denies wrongdoing, arguing that its marketing efforts were proper and that the state cannot prove it caused the opioid epidemic given the role doctors, patients, pharmacists and drug dealers played. It also indicated it is open to a negotiated settlement.

On the NBC News Nightly News on Tuesday, the coverage of the Oklahoma trial led to an assertion by the reporter that a trial in Ohio—where 18 separate lawsuits are being melded into one action—could mean billions in damages.

The reporting, as you’ve read, still is concentrating on opioid overdose and abuse.

The chronic pain angle—and what good opioids may be doing for the chronically ill– goes, woefully, unreported.

If you have a story you want to tell the media, let us know (include what city you live in) in our comment section.

Thanks!

Authored by: Ed Coghlan

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Patricia Reynolds

Hello, I’ve been a chronic pain sufferer for 14 years. I was abused severely by my ex husband for 13 years then a boyfriend who beat me for three long hours. I worked since I was ten years old then two full time jobs in my adulthood. My pain started in 2006 after giving birth to my fourth child. I started like most people on my long journey of trying to get relief. I went to physical therapy, massage, then tramadol and muscle relaxers. I have also tried herbal remedies, no not marijuana. I ended up being put on hydrocodone by a doctor after physical therapy became too painful to do anymore. I have been on pain medication ever since. I’m inoperable with bulging and herniated disks, degenerative disk disease, scoliosis, osteoarthritis throughout my entire body. I’ve had to stop working and I know am disabled and on social security. I remarried in 2010 and my second husband I am now married to has Parkinson’s disease and I am his caregiver full time. I have since been put on oxycodone which have me somewhat a decent quality of life. I was able to get my housework done, not as I once was able to do before my pain started but I managed. My doctor was wrongly arrested and accused of illegally prescribing drugs which is not true. My husband and I have been his patients since 2009 and we always passed our drug tests and pill counts. Our doctor was raided by Dhec in SC in May of this year and since then we were thrown off of our medicine and slammed into withdrawal which was horrible and inhumane! We have still not been able to find a doctor yet and it’s almost September! We have absolutely no quality of life at all!!! Pain meds were the last resort we had and the only thing that worked! I’m sick from eating Tylenol and nsaids which is I’m sure killing my liver far worse then pain meds! It’s really messed up that animals get better treatment in this country then humans do!!! This which hunt the government is on needs to stop!!! They need to stop persecuting legitimate pain!

Julie

Hi everyone. My name is Julie and I want to share with you some information you may or may not already know. My heart goes out to each and everyone of you as I too am in the same frustrating, lack of relief boat. So I suffer with degenerative discs, fibromyalgia, TMJ, Trigeminal Neuralgia and degenerative discs with arthritis in my neck. About 7 years ago my back went out completely and I was down for 3 months ( thank God my son wasn’t working at the time and was able to help me ). I would have to slowly roll to my side to slide off the bed until my feet touched the floor and then walked completely hunched over to shuffle to the bathroom. It was then that sympathy for older people in nursing homes became a full blown understanding of why a lot of them want to just give up and pass away. Now I have to say I am NOT suicidal at all never have been and prayerfully never will be. However, I grasped the understanding of why a lot of people think that way when in a predicament such as I was in. The depression you feel from just having to lay there, the lack of the ability to move around and be active ( that was the hardest thing for me as I have always been a very active person ). Having to depend on someone else for everything and just the loss of my independence as a whole. I’m going to fast forward to now. I go to pain management and have done extensive research on all this crap that’s going on with the medications and the reasons they give but are not the reasons at all. But I spoke with a doctor that told me that our House of Representative said that if 100 people wrote in ( to the Washington office ) and you can do it through e-mail and also copy it to send it through regular mail that they could bring it before Congress and we need to keep writing them until something changes. Don’t get crazy and disrespectful just plead your case and reason and ask that your doctors be able to treat us the way they need to without their hands being tied unrealistic regulations.

David Garner

I am a chronic pain patient. My doctor is trying different meds in part because of CDC guidelines. I had to quit leverphanol cold turkey because I experienced serotonin syndrome. After 9 days I got an appointment. While there my BP was high. They decided to try the other arm. Then it was 196/136, caused by pain. If they continue to impose stupid laws ignoring those with chronic pain, not only will we be constantly in pain, but it may well kill us.

I read that 10% or more of suicides are people in chronic pain. I have prayed to die several times and once considered suicide. I realized that that would be the ultimate lack of faith in God.

Lori Gary

My name is Lori and I have Intercostal Neuralgia in my T9 and T10. I woke up on March 3, 1998 with excruciating pain in my ribs. It took a year of multiple medications and procedures to finally get a diagnosis. I was put on 150 mg of Methadone to ease my pain since everything else did not work. I had a doctor for 18 years prescribe my medicine without any issues. I have never had a dirty urine, no red flag behavior and a sooap level of 1 (which is the lowest number of a scale that says I am not likely to abuse an opioid.) In August of 2016 I was told I had to find a new doctor or pain clinic to get my medication. I did find a pain clinic who had no problem taking over my care and still gave me 150mg of methadone a day. In December of 2018 I was told I would be tapered down because of new laws. A nurse practitioner took my meds from 150mg to 90mg overnight. I was so sick and in so much pain I couldn’t take it. I called for help and the nurse practitioner wouldn’t even speak with me. I lost my job because I couldn’t go to work being in pain & sick the way I was. It took 3 months for me to feel even half way better. I found a new doctor who continued to taper me, but only at 10mg per month. I now take 40mg of methadone and it isn’t enough medication. I have begged them to help me and it’s NO! No compassion or concern and they say it’s the law & nothings gonna change until the government changes. The doctor told me to go to a methadone clinic to get my meds! I am not an addict, I am a dependent. I was furious!
Methadone clinics only treat addicts. It doesn’t seem fair that an addict has an easier time to get meds than a pain patient. The government has to know that one size does not fit all. Many chronic pain sufferers ( including myself) are now becoming suicidal because of uncaring doctors and a messed up government. I would tell my story to anyone who would listen. I hope everyone in pain finds some relief soon. God bless you all🙏😢

Kristin

Maine AG just filed a lawsuit against Purdue pharma.
I called Purdue pharma and offered to help in any way I could. Their medicine has made the difference of whether I could be an active participant in raising my sons.
This lawsuit is about $
No doctor that I knew of, and I’ve seen many were passing these out freely. And the people who ended up with a problem never had a legal script.
I also thought the whole recovery thing was to take responsibility for your own actions. Taking a handful to get high and then blaming the dr, the pharmaceutical companys is not taking personal responsibility in my book.
Maybe we should all back the pharmaceutical companys. That should get people’s attention

Cindy

It is infuriating that the media only reports about the “opioid epidemic” and there is barely anything about the chronic pain “epidemic.” How can we get TV, newspapers, and internet media to “talk” about the millions who suffer needlessly? One can only hope that the chronic pain task force paper will do much good in the fight for fair treatment for those of us who need it.
Pagosa Springs, Co

Anon

I had 3 level neck surgery back in the Summer of 2015 and even back then after a major surgery Opioids were being cracked down on.
I awoke from surgery trying to scream from severe pain 2 days in the hospital and it was never brought under control also left with a smaller script than when I went in for surgery. I stayed awake for 7 days straight from the time I woke from surgery it was a waking nightmare.
I can not prove it but I believe that they Fentanyl meant for my recovery was being diverted by a few .
I pressed the pain med button 110 times in 8 hours and got zero relief my vein was not getting it when Nurse removed IV she asked me what the HE -double- hockey sticks did they do to you ?
I called the surgeons office every day after in severe pain no sleep I was told to pray,listen to music,meditate.
ER turned me away,surgeons office turned me away my family doc was on vacation and his partners turned me away because Surgeons are god’s and not suppose to be gone against. When my family doc was back the reception desk didn’t want to allow me to see my doc and I told them I am so depressed if he does not see me I will not be alive by tomorrow. that was day 7 of zero sleep.
My family doc saw me and gave me a patch.the surgeons office because I was assertive in my claim the pain was pushing me toward suicide they were jerks and thought I could ride in a car for a hour on bumpy roads for a pill count.
My family doc said it is typical Surgeons not providing effective pain care after surgery,which prevents healing .My Blood pressure and how I looked were huge indicators I was close to stroke and not 1 of the docs that turned me away even checked my blood pressure.
My family Doctor called surgeon and told their office after he counted my pills ( I was not short either.) my PA informed surgeons office he would handle my pain management from now on he was angry I was released from hospital in that condition WIsconsin

Beth

Why aren’t they suing alcoholic beverage company, for anyone that dies as a result of alcohol consumption? Car manufacturers, for anyone injured in a car?? Potato Chip companies for obesity???
I can go on and on. This is just another witch hunt, with overzealous government. Ridiculous!!

Suffering in Quincy, CA

Woefully unreported is right. I’ve been in excruciating pain most of my life thanks to sacrococcygeal dysfunction and vascular EDS as well as porphyria. The last two are rare genetic illnesses that do not go away, the first is a fancy way of saying screwed up, mangled tail bone that protrudes through my skin and bleeds and hurts extremely bad with any sitting or standing. The soft tissue around it is calcified. My SI kills me so bad, probably from the vascular EDS, that I want to take my own life when it flares up which is often. I have temporary paralysis of both legs at times if I sit, stand or walk too much. I’ve had 7 DVTs (deep venous thrombosis) or serious blood clots in my left leg spanning belly button to ankle. My recovery is ongoing and my leg swells three inches with ANY activity. My iliac vein was dug off my spine in 1995 but the reconstruction failed, it’s permanently occluded. I’m deemed permanently disabled from the sacrococcygeal dysfunction. Getting benzyl alcohol containing heparin for DVT #6 pulled me out of porphyria remission. I’ve had 36 attacks since 2016. They are life threatening and excruciating. I’m suffering from left arm bone and muscle pain that’s lasted since attack #36 in January. Both arms are in excruciating pain most nights and I wake up screaming. I have degeneration in my spine and I have to wear a hardcore compression stocking anytime I am up (not Ted hose, those are way too loose), mine costs $85. I also struggled with severe endometriosis for over 20 years and I’ve had five surgeries. Huge enterocele and rectocele hernias were repaired. Part of vascular EDS, a connective tissue disorder. I’ve been on opiate pain medication for the better part of 15 years without incident. I’ve never asked for an early refill and I’ve done all the pee tests, contracts, you name it. Opiate pain medication has been the ONLY reason I had ANY quality of life, was able to work until age 43 (started at age 13). I face being cut. I won’t survive.

Absolutely absurd to sue the makers of painkillers. Its the [edit] being made in garages that’s killing people. I smoke, so do I sue the tobacco companies if I get sick? NO!!! Cause I know the risks. If you overtake and abuse to get high, God gave you a damn brain. Your gonna hurt yourself!!! STUPIDEST thing ever. Lets sue Hershey while we’re at it when we get Diabetes..

Vicki

Mary, I could not find a way to comment directly to you. But you suggest finding another doctor? How? Where? They are all just giving in and not prescribing. It’s so unfair. Please email me attoryhobcaw@yahoo.com. Thank you.

Gordon Ross

I live in constant pain from problems in my lower back. When I go to a Dr. or Specialist to address my situation, the last thing I discuss with them, if at all, is pain medication. The reason this is, is because whoever I see, I don’t want to be stereotyped.
In other words if I bring up pain meds and the possibility of receiving any, I’m instantly put in the category of just being an addict trying to score strong medication. The bad part of this is they instantly think I’m Dr. shopping, trying to find a Dr. that will prescribe me what I want for however long.
Once this happens, which takes only a few minutes if that long, it’s their opinion that I’m an addict and from that moment on the care I’m trying to receive is greatly compromised, which is in their mind that it’s not them who’s going to be taken in a scam.
They decide that I am what they think so ignore my problem even with proof of my condition such as x-rays, cat scans and MRIs.
They do very little, if anything at all, trying to be rid of me as a patient.
It’s my opinion that there’s been Dr.’s that has prescribed too many narcotics to people who don’t need them for way too long, and that impacts the people who could benefit from them, in their intended way.

Mary

Why don’t we just stop going to the Dr’s, or “pain specialist ” who can’t or won’t prescribe effective pain medication? I SURE DID! I didn’t do it right away with some of them. I gave them a chance. On the chance they would be merciful. But now I’m refusing to waste my time,and whatever insurance pays for those futile visits. Why should they keep getting paid for the barbaric treatment? I REFUSE! Maybe then these so called “compassionate ” Dr’s will actually try to take effective actions. Instead of harming us. Take a stand! Even if your only able to stand on the inside. STAND! STOP REWARDING THE COLD AND CALLOUS BEHAVIOR OF THESE DR’S, BY CONTINENTAL VISITS THAT BRING NO RELIEF.

Mad as Hell

I have so much hard ware in my body that I feel it rubbing my muscles in my body doing muscle damage yes I do take hydrocodone 10 mg 3 times a day there is no opoid crises it’s a street drug crises just like Prince he thought he was buying Percocet in Atl Ga which is where I am from and it was Phetanol which I have tried makes me to loopy any who (owl talk ) the pill he took was pure phentnol so that’s why he died he was very intelligent musician person (my niece Erika Jayne stage name ) stay in a Hotel Room with him and Sheila E she said he was so with it on his 5 mg Percocet you can imagine the pain he was in from dancing my niece Erika has had 3 knee surgeries knows dancing ruins your knees so in 1999 I was put on 20mg Percocet 6 times a day I felt great I had a spinal fusion that was cutting the siactic nerve into in 2011 I had all that hard ware removed by an orthopedic Dr you take about pain when that nerve was connecting back together I was ready to blow my head off which I tried to but wasn’t a good shot and shot my foot and got put in Ridgeview Mental Instatute for 2 long painful weeks could not see my husband son granddaughter or my dogs 1 was diabetic and the others were fine now does the FDA want to take responsibility for us who are in pain to comment suicide or watch us die in pain very slow hell no we will be buying street drugs and become homeless junkies I’m sick and tired of Government being in the office of my Dr I go all the way to Meridian Miss to a pain clinic what works for me is Dilidid and they shot the prices up till I can’t afford it we are on fixed incomes I’m 65 and my husband is 69 he also is in constant pain he has 2 twisted discs so we lost our son in 2007 due to exploding hot water heater that killed our hearts he also had had back surgery from dancing do you think his landlord even said anything no his Insurance company called me and said my son started the fire that’s not true he had left my house I had just gotten out of the Hospi

Wendy

The CDC guidelines on Opiates were NOT to be intended for CPP but IT HAS!!! It is not fair to target the NUMEROUS people in chronic pain and I’m one of them!!! Due to my dr warning me that I will be tapered EVENTUALLY, I have looked into and used a few natural remedies that really work. Please, do not kill yourself but try natural things like- CBD oil (full spectrum), MMJ, Kratom, wild lettuce, turmeric and cinnamon. Also, eat plenty of foods that fight inflammation. That is a great way to start. Please join the Don’t Punish Pain rally in your area and join on FB. We have to make our voices heard!! They are punishing the Wrong people! Intended or not, it’s happening. Good luck and God Bless is all.

Chrys

Opioids provide a tolerable existence for me. I suffer from spinal stenosis, degenerative disc disease, bone on bone pain in both knees and chronic migraines!
I have tried every single alternative to opioids in order to provide some relief. You name it, Ive tried it all except cbd products because the dr will not prescribe this so I could try an external balm even without THC.
The only thing that provides some relief for all of my conditions is Norco, prescribed in a very limited amount by my pain Dr. i use it only as prescribed by one doctor and from one pharmacy.
Without Norco, I would strongly consider ending my life of excruciating pain.

Patty

Enough is not being done to get DEA off of pain management physicians’ back. My husband lives with chronic pain 24/7 and his meds have been cut back. FDA, DEA, CDC can’t begin to imagine this horror!
—I wish these government employees would allow themselves to be subjected to this same type pain, 24/7– for just ONE WEEK and see reality first hand. Laws would be changed overnight!!

Ali

As retired RN,CNN & Compliant intracable chronic pain patient I have seen thru the decades the travisty of injustice of Opoids be drug thru the mud. Government agencies can’t control the cartels and drugs so government agencies are taking control of the population they can strip of any pain medication. The government agencies have a history of medical negligence:
Black men syphylis study deaths.
Infant’s thyroids radiation cancer.
Formula to third world countries infant’s deaths.
Agent Orange veterans and children lukemia deaths DENIED.
AIDS patients early on when admitted to the hospital no charting of AIDS allowed. Nurses with needle sticks given no report of AIDS, no medical care, no follow up.
1990’s nurses taught give patients pain scale rate pain for physician intervention to relieve pain.
Now 2016 strip Compliant Intracable Chronic Pain patients and Veteran’s of all pain meds without any studies to show this patient population has same withdrawal and long term use.
Suicides still continue with no duediligence to address this. Government agencies blantenly ignoring them daily. This is a travisty of injustice on these deaths for these suicides are collateral damage from these government agencies.
I am a COMPLIANT Intracable Chronic Pain patient with chronic pancreatitis, fibromyalgia, debilitating migraines, and my physician follows the government agencies guidelines causing my pain script to allow less then the minimum for my debilitating pain.
I am a septagenerian, a COMPLIANT Intracable Chronic Pain patient for 20 plus years and never abused my pain medication that gave me quality of life non-existent.
Government agencies placed these guidelines to follow with profiling Compliant Intracable Chronic Pain patients and Veteran’s to label them in the same studies as street drug addicts. There are no STUDIES on intracable chronic pain patients and Veteran’s for Opoids use long term and alleged addiction. We have been profiled into no HOPE.
Joplin, MO

Gail Honadle

It’s about the money states, cities, counties can Blackmail from Pharma. A lot of us have been damaged by their BAD drugs I’m 1 there are Millions. No 1 understands the progression of drugs into the USA, this is just a small explanation.

Actually it is, CIA has been running black Tar Heroin since Vietnam along with guns, still doing it in the M.E. NAFTA, ALL the trade deals including China allows Illicit drugs to be shipped into the USA. 1 batch came over the a wall section in a catapult 1 in a ultralight air craft, they hide them in lobster traps that fishermen pick up. They are well organized in shipping handling and distribution, the cartels flooded the farms on the Mexican side and told the farmers what to grow it’s why they have kill zones add gang turf wars are taking out thousands Mex LEO are part of the cartels, bribed or threatened into it. Illicit drugs go to Canada, guns come back to the Cartels. Our LEO are out Gunned.

Our government is looking the other way, short of a full out Mexican war you can’t stop it. As long as there is a market they will provide the product. Same goes for China. We don’t have the man power to change or stop it. This Mexican wall will help some, that is another reason Pelosi fights it so hard, not just Trump hatred. I suspect her husband company launder money for the cartels can you prove it no as no one audits his books. Many in Congress are crooks skimming tax $. The Longer in Congress more than likely skimming happens. A good 1/4TH of Vietnam war dead were OD’D government covered it up listed them as KIA. To hide the heroin/Gun running. MILLIONS OF TONS OF ILLICIT DRUGS ENTER THE USA YEARLY. FAR MORE THAN PHARMA PRODUCES.

Linda B

I have been reading all the comments and I understand and sympathize with each and everyone of you. I was just let go by the PA-C who started treating me after my doctor of 22 yrs. retired. I was at a dose that didn’t completely stop all my pain but I chose to deal with some pain to avoid some of the side effects. The new provider told me he wanted to taper me off even more. I tried explaining, pleading with him not to do that because I knew the hell I would then be forced to live. I have several “unknown” diseases, one, my skull and facial bones are changing shape and I have attacks from this several times a week. It is excruciating. I have [what the doctor thinks] is calcification lumps attached to the ligament on the outside leg, which is also very, very painful; but he isn’t positive because I can’t get a biopsy. I have 5 known auto-immune diseases; 3 of which could kill me.
I have known the worse kind of unimaginable pain 24yrs ago. I tried everything under the sun and nothing worked; until I was given a pill for pain. I was able to get out of the wheelchair, get back to work and have a life again.

But, over the last few years from doing the voluntary taper, I have lived with a degree of pain every day. For the doctor to taper me more is inhumane. By his doing this, I know from past experience, the pain I am going to be facing and I just can’t survive that horror again. I am 65 yrs old and so very, very tired of fighting to get my medication, fighting to keep my medication, fighting to find a doctor who will prescribe them; I just can’t fight any longer. There is no deep well anymore to pull the strength from; the well is dry.

I hope that this country stops this madness but given the current political climate, I don’t see that happening any time soon.
I pray for cures and answers and help for all of you and keep fighting for as long as you are able and hopefully, just maybe, sanity might prevail.

Gail Honadle

While I live in Intractable Pain, Osteoarthritis drugs ruined my GI Tract, Barrett’s Esophagus a Pre-Cancer, Gastropresis, which pushes me toward Type 2 Diabetes, a completely Degenerative Spine that the Lumbar has Calcified, created Neuropathy of hands, arms, legs and feet. FMS, Enlarged Heart with Mitral Valve Leak, OA, OP, all from FDA approved drugs. I’ve had more nerve blocks, steroid shots than a human should have. I want to draw attention to the side of the story NOT being told. We think we have it bad, my Canadian Friend Shannon MacLeod has it worse as his whole body is shutting down due to 1 bad back surgery, now NO doctor will see him they don’t Have to. So never wish for Socialized Medicine it STINKS.
He lives in Nova Scotia thus part of Canadian Socialized Health Care.

He was managing on Pain MEDS to semi function, now he is basically Non Functional. He has AA adhesive arachnoiditis of the Spine Stage 3. Glace Bay man with incurable condition can’t find a doctor https://www.capebretonpost.com/news/local/glace-bay-man-with-incurable-condition-cant-find-a-doctor-174052/?fbclid=IwAR0dTHQMlCloiChWxpuDJhmzdeJvtmXxIa5fq2MFipBgLVN3bENuylqZHuI Cape Breton man can’t find family doctor despite pain he calls ‘living hell’ https://www.cbc.ca/news/canada/nova-scotia/find-doctor-pain-man-adhesive-arachnoiditis-referral-medical-health-1.4471666?fbclid=IwAR1rURFpBFNGJVonGFSD3YS0NR-cxPV81qLrhl7v9RWEWohD1J_GJPGqZy4

Shannon is Contemplating SUICIDE. And I can’t say I blame him. No one should go through the TORTURE he’s gone through. He’s 49, a failing body with Stage 4 Bone Cancer Pain. Pain Meds has been for the last couple of years his only life line.

Chronic pain patients are suffering because of this Opioid crisis and no one cares or is standing up for us . The Drugs that people are dying from are Fentanyl and Heroin .. Your attacking people who have chronic illness and depend on pain meds in order to have some quality of life. Our pain is real , we have legitimate health issues . Stop making us suffer ! Your hurting us and not your not saving any drug addicts lives they buy there drugs off the street .Build the wall and stop the flow of drugs into our country , that would be a better start to solving an Addicts problem !!

Paulette Brown

I have chronic pain ALL if the time & have for the last 18 years. I have scoliosis of the back that is getting steadily worse, I have bulging disc in my lower back & my neck. I have to get injections in my back to be able to walk & take pain pills to be able to walk, stand & try to bear the pain from the pinched nerves in my spine.They did back surgery on me in 2009, they tried to free up space between the bulging disc & removed bone spurs. It was of little help. I’ve gotten progressively worse, a neurosurgeon won’t touch my back now, but an orthopedic said he can do a major surgery that is really two surgeries it takes two days. They open me from the front on the first day & spread everything apart & remove a few ribs to make room for a to titatium cage, rods, & screws to go up & down my spine to straighten it. Then I stay in ICU & have blood transfusion. Then the next day, they put all the metal in my back. Then it’s 6 wks in rehab. But I can’t have metal in me, because I broke my ankle on both sides, & they put a plate & 4 screws on each side of it & I was in a wheel chair for 6 months because my body rejected the metal on one side & it had to be removed. So if they put metal in my back & that happens, I’m really screwed. So I REALLY NEED my pain meds. I never abuse them, I take them as prescribed, even if I’m hurting like neck, I tough it out until time. So it’s not fair that they punish the ones the REALLY need them just because there are FOOLS out there that want to kill themselves.

Dar

It doesn’t look good for professionals in the medical and legal communities to stand-up for pain patients. It has proven that people who need pain medicine are not the problem. Nobody seems to getting better, and the news just keeps making things worst by using ‘opiates’ as ageneral term, never clarifying if they are speaking about medicine, or the illegal drugs that are killing more people everyday. Then there are alcohol and tobacco, even more lives ruined, legally, and promoted extensively than ever. What are the benefits of these dangerous substances? Do they help people in pain live, and work, even if only for only a short time? We, pain patients, are being held as hostages in this war against people in pain, and nobody who could help us professionally seem to want to stand up, and stop the torture. Personally, I don’t know how much longer I can live with this pain, and humiliation. I am not sure, but I do try to make a difference, even if it is just posting my messages. We are being treated like criminals, and tortured because the medications we need, and have lived on in order to function, are now a legal decision, not a medical decision, and our basic human rights have been seized.

David H

My name is Dave from NJ, I was diagnosed with HIV in 2004, b4 that I was very active and overall healthy, after years of Atripla and Truvada, it has caused SEVERE osteoporosis, and muscle damage, I have had 2 hand, 3 foot, 2 back surgeries, and now have to have double hip replacement, I am in pain 24 hours a day, 8 or above, was diagnosed with CRPS, as well as NUROTOXICITY, I have had My meds reduced, but if it would go lower I would literally go insane from pain,…I wish people realized I’d much rather be working and enjoying every day activities. It is true, many people live long, full, happy lives with HIV, but they dont report that 20-30%, more so the latter, incur this neurotoxicity, on My 4th regimen, most people dont realize how We as Chronic pain sufferers take our meds on time, and are careful to what other medications We take, I would be happy to tell My story to anyone at any time who would be willing to listen.

I’m more than willing to talk about what this fiasco has done to myself (I’m in bed the majority of the day), my husband (whose doctor dropped him, had to find another, and has to do everything I can’t without pain meds), and what it has done to our 25 year old daughter with fibro and TN, our 15 year old son with Asperger’s and Osgood-Schlatter’s disease, and to our 7 year old granddaughter who, unfortunately, understands way too much.

I’ve been advocating for patients in Western MA and all over the country since I became a patient in 1998, and this is the WORST that it has ever been for any patients, nevermind those already in pain. We’re very lucky that the oral surgeon took my daughter’s diseases into account and will be prescribing pain meds for her after she has all her teeth pulled and two bony growths on her lower jaw shaved down.

I’m in the Springfield area in MA (in the part of the state that isn’t Boston).

Anonymous

PS. I still do not understand why all this tapering is starting or worsening when the new draft to correct the misunderstandings by the 2016 CDC guidelines that I am not sure started it but fueled it came out made more sense and even said UNDER TREATING pain was wrong
I read the draft on this site Mr or is it DR
Coghlan what is happening or happened to them that should stop this state by state bull…,??

Kevin

This country has a heroin crisis, not a larger “opioid” crisis. The number of deaths from non-heroin and non-illicit fentanyl (aka “prescribed”) opioids has been virtually the same for the last ten years. The numbers are plain to see, but those reporting on the issue never really drill down to the truth in the numbers.

Further, I would like to know how many people die from the overdose of prescribed opiods who are being treated by board-certified pain management physicians, who pass all their drug screens, who make all their appointments, comply with the treatment contacts they have with their physicians, and take medications as prescribed?

Susan

So where’s the uproar over the 400,000+ Americans who die every single year due to hospital error? That number doesn’t include the hundreds of thousands who die from APPROPRIATELY PRESCRIBED drugs (and I’m NOT talking about opiates) every year.

So, I wonder how are the states are going to spend their newly-found windfall? Of course, it’s NOT going to address the country-wide Invasion of the Street People (“ISP”) that’s being waged on countless fronts; those people aren’t using Vicodin, they’re using street drugs, like crack, meth, PCP, and, of course, heroin.

How’s all of that heroin getting in here, I wonder? Mexican cartels? Maybe. Whomever it is, they’re getting help from SOME government agency…it’s not being brought in one drug mule at a time. Perhaps it’s the heroin produced by the Afghani poppy fields—the ones that OUR service men risked their lives protecting— that’s what’s killing Americans. This “war on opiates” would be a disingenuous distraction for someone looking to create chaos on a social level, launder money on an economic level, and perhaps overthrow a government while they’re at it.

Now, this isn’t to say the drug companies are blameless. There’s plenty of blame to go around, amongst the drug and insurance companies, doctors, pharmacists, and patients themselves. Victims, too. But the STATE will get the money. Mmmm, that seems fair.

We are mere pawns in a much bigger game. Time for a Plan B.

Thomas Wayne Kidd

I would be glad to tell my story but I feel that it wouldn’t help. This so-called opioid crisis was hatched up by ignorant and evil people. The drug cartels and many elected officials are benefiting from our suffering and have no care about the damage they have done and continue to do. I am sickened by the hypocrisy of both political parties. I will just trust my Redeemer and ride this out. I will encourage others to do the same. Things are only going to get worse and worse with little periods of rest from time to time. Thank you for your work on our behalf.

Researcher

I think it’s obvious by now our stories don’t matter….with the opening statement being 130 deaths a day INCORRECT, & that pharmaceutical companies are to blame. Yes, TWO DECADES AGO. And the FDA supported oxycontin Purdue 2 decades ago.
This false narrative will continue. We need to expose the bigger picture of WHY this false narrative is being spread.
Which I won’t explain…AGAIN.
Peace& love to all my family in pain.

I was just told by my health care pain management doctor that in the state of Hawaii – they would rather me die – since they forced me off the pain medicine that I was prescribed for over 26 years, That my rare genetic bone disease, that has no cure, has spread further down my cervical spine and has now eaten two holes into the valves of my heart – a life threatening condition -THAT THE STATE OF HAWAII WOULD RATHER WATCH ME DIE THAN TO put me back on the medicine, to help me taper off of it SAFELY -in a way that causes NO HARM!! That I will have to leave the state of Hawaii and live else where – in a state that has medical system that is run by doctors and not the DEA and Attorney Generals. IT was just proven that since, the state, dea and attorney general-believe that they have the right to decide what a doctor prescribes..Sadly – he was just being truthful……owning my own land and home meant so much to me – made me feel so proud & safe- NOW I would rather live on a beach home-less if it meant I didn’t have to live in pain, going from my bed to my couch to suffer all day in debilitating pain…..is not living-

Thomas Wayne Kidd

The madness continues. It’s not about the sick and dying but dollars. Our nation is on it’s death bed and there’s not much that can or will be done. When government get into the medical field, patients and doctors all lose.

Ron LaPine

I have used virtually every medical opiate available by script and followed all rules. Now because of conflict of med l have been cut off all pain medication and no quality of life. Why?

Ron LaPine

I have a very valid example of a totally medical treated situation. I was 42 year old executive destroyed by a drunk driver. I have had 8 surgeries, 3 brain, 3 spinal cord. My record reflects l never failed a drug test , it has taken 22 years, destroyed my family. Because of Gov. regs l have been cut off medication because of a stated conflict. I was just at point of returning to competitive tennis and career on a low dose of opiates. Instead l have been cut off. All doctors can verify l never violated and reached if needed help. Now l am back in hell. What is left?

Ellen

I would gladly tell my story both as a 25 plus oncology bone marrow transplant nurse also worked with patients in sickle cell crisis and AIDS at height of sadness prior to new meds now disabled by a rare chronic illness diagnosed at UCLA medical center 2005 had intermittent now severe chronic pain recently worsened because insurance denying not generic pain med but form I absorb better had off since 1999 actually took less opioids ( prefer opiod pain medicine) that way then now and am suffering because of it. My number 206 854 2590 Please call me and since others see this number I would have to call your paper or tv report back to confirm who I am giving highly personal information too
I have seen pendulum swing and it is horrific what is happening and drug companies are not responsible if a patient does not take as prescribed and does not tell doctor they are over using or maybe pseudo addiction meaning pain is not controlled so need talk with doctor We will and are seeing I bet a lot pseudo addiction with patients loosing what regimens or amounts helped them
Lastly if you have a chronic pain condition that can not be fixed or is not going to kill you the pain is not going to ever repeat EVER stop nor stop needing the amount of opioids it did to control it
Chronic non dying pain patients are not addicts may have episodes tolerance requiring increase but will never without a cure for there illness stop requiring opioids until day they die and God forbid it is not by suicide due to uncontrolled pain.

Gail

Again, this is a population control action due to failure of the government to understand what they are doing!!! The problem is drug overdoses and that is an addict problem !!! The reaction of the government is to punish doctors, pharmacists and patients who are NOT the cause !!! They have caused so much damage and NOT gotten the desired results.
Pushers, Cartels and addicts are the source of your epidemic and NO-ONE is willing to admit their actions are malicious and stupid!!! If your actions up to now have NOT given you the desired results you are aiming at the wrong group!!! Kolodny pushing Heroine as opposed to Opioids is ludicrous!!! This is a money grab and to HELL with the patients who are on long term treatment for actual conditions!!!
Where is the sanity in this problem!!!
You are killing off innocent patients because you have interfered with their right to safe,
consistent treatment without being blamed for drug addicts and worse!!!
I can NOT understand how non medical people can suddenly decide that being ill makes
you a drug addict!!!
And Pushers, Cartels and addicts have been given free reign while you torture patients,
doctors and pharmacists!!!
THIS IS A witch-hunt and NIGHTMARE!!!

We all need to flood our congressmen in every state we are from ,with emails, letters, phone calls, etc. They are our voices, and until we learn this new American way of getting heard, we will soon be praying to just die. Yes my pain IS that bad.

urq3

Comment after comment…I could reiterate but I’ll save it. ALL of these I’ve read hold so much of my own truths. A few days ago I stated in a comment at another site that It is an inalienable right for all of us, yes even pain patients to have a quality of life that allows us to be a productive and willing participant in life. Many, many people don’t!

WHAT??!! Where did my comment go??? A lot was here, Now gone! Essentially I’d like of these peopleto add, it is NOT OK to take aim at chronic pain patients. YES! There is a problem and it’s with the suffering addicts found everywhere. Mainly on the streets. Quite a few somehow “drivewn there” & many of them were once CPPatients that were DROPPED off their meds. A very dangerous & deadly possibility. Makes me wonder, is this an idea for a very small percentage of people to be killed off?
So out of hand..not so long ago it was the methamphetamine labs or cooks, the users of this killer of a drug. I wonder how it would be in the homes of any these “rule makers” in charge of OUR lives…
Would their loved ones be denied??
Another HUGE problem is trying to find pain management. Appointment after appointment. All same paper work, bottom line, “Sorry too bad for you…” HOW do I find someone willing to address & help my problems? Five failed back surgeries, another one my neurosurgeon wants to do, scheduled but I cancelled it.
Thanks for all of your comments, much appreciated… Take care all…..

Dawn Witek

I am from Milwaukee, Wisconsin. I already got one of my pain meds lowered in half and my doctor has talked about lowering the other one next. The pain that has come through due to the lowering is so EXCRUCIATING, intense, sharp and stabbing. I’ve been letting my doctor know that this is going to force me into suicide, my only option, because I will not turn to illegal drugs my only other option. This is just so fucked up. The government had a fit because criminals took illegal drugs are were dying, overdosing Everybody was in an uproar about it. But when law abiding citizens are forced into suicide you don’t here a Damn thing about the sky rocketing suicides numbers. The government didn’t think this shit through, because if you take the pain meds away from people don’t you think that they will try anything to try and ease that pain. Meaning some people might turn to illegal drugs. So how is that helping? If there is more people doing illegal drugs then don’t you think that there might be even more overdoses. People that take pain meds need to realize that when you die they are going to rule your death as opioid related, that way their statistics keep going up. They did that to my fiance. They tried to tell me that he became allergic to it, that’s [edit]. I know that that’s not why he passed away, it was due to his heart being more then twice the size and he also didn’t take his high blood pressure meds.

Martina

I have panic attacks a week before my pain management appointment. I have had my meds cut and switched every month since January. I have lost weight and the will to live.
I’m now considering rehab to do this on my terms not at the doctor’s mercy. A doctor that has been handing this out to me for 10 years for lyme disease and believes that now that I have crps on top it would be al good idea to tapping down

Cindy

I will add to my prior post that –

I have tried a LOT of non-drug treatments, and non-opioid drug treatments. For my pain, which resulted from a surgery, nothing helps except opioids. I absolutely am not addicted. On a very rare day of limited pain, I can take fewer pills and have even skipped pills completely on amazingly rare days of feeling pretty good — although I havent’ had a day like that in several years. But I absolutely need them to live, just as a other patients need their meds to live.

I live in Collier County, FL.

Cindy

I am replying to the request for media stories.

I did send my story to the Task Force.

I live in Florida and am happy to share it with the NPR if you want to contact me, via email.

I dont’ want to post it all here and now, although I have posted many parts of my story here in the past.

A few Hi-lites –

I was on opioids for over a decade before my forced taper was reluctantly imposed last fall by my pain manager who told me he feared the govt if he didn’t do it; he showed me the CDC Guidelines.

In Feb, I considered suicide due to a days long pain spike; I was too worried about later running out of pills that I almost didn’t realize in time that I had enough pills to take that day 4 of the spike and survive that day.

Two years ago, before my forced taper, I was able to fly out of state to reach my mother’s deathbed just in time. Now, due to the forced taper, I won’t be able to do the same when it’s my father’s time. And he’s about to turn 91.

For me, any activity increases pain. The forced taper has caused me to be even more sedentary than before. Since it was imposed I stopped even trying to go for occasional walk — my only exercise. I was just informed of an elevated risk of a heart attack in the next decade. My bone density is a constant concern. Etc.

The forced taper shrunk my already limited life. I go only to medical appts, and basic errands. My home has become dirty and gross. I’ve had enormous constant stress out of fear of running out of pills.

I always knew that I”d have killed myself years ago w/o opioids. I cannot stand the pain. I don’t know what will happen now. I worry about further cutbacks. What if my doctor stops practicing, etc.

Catherine Sandell

I am a pain clinic patient and have without a doubt needed the pain medication that I’m on! I think it comes down to an addictive personality trait. I don’t have any problem with skipping a dose and dealing with the pain if it’s a 2-3 and may even be a 5 before I get home to take my medicine. It comes down to how responsible
the patient is than the medication itself! The road chosen by the media and political parties is that the makers and doctors are responsible but I know for a fact that a person can control themselves! The people who are overdosing are those who have a strong addictive personalities and will not take responsibility. It’s a shame that mental health isn’t considered! Please think about using mental health practices before taking a pain patients medication away. It’s a disease just like neuropathy or osteoarthritis! No one deserves the hell of withdrawals from the strong pain medications that have been given to help them!

Jeanette French

I can share my story as well

Jeanette French

so sad this is happening as everyone who was alive knew that these medications were addictive, if you didn’t know then you were living under a rock, the drug companies are not to blame, just like the makers of alcoholic beverages is not responsive for people becoming alcoholics. It is going to do great harm to the process of new drug discovery and bankrupt drug companies out of greed. Drug companies push any new drug no matter what it is made for, otherwise it would not sell and they would not make back the money used to make the drug discovery in the first place. We do not sure alcohol makers for drunks do we? It is also going to have the added effect of causing less of the drug to be available for those that need it. These should not be allowed to go forward. Families are blaming the drug company for making a drug that has a very good use in certain situations and that someone they loved abused it, and there will always be addictive personalities, gambling, sex, etc, No one is suing the Casino, or the alcohol makers, or the cigarette makers. etc.. It makes no sense.It is hurting patients who live with pain each and everyday. And the sad part is the whole opioid crisis is based on illegal drugs and not prescription drugs. To make it about prescription drug is to remain blind to the real cause and harm.

Loyal P Kuhn

I have a cervical stenosis causing pressure on my spinal cord. I also suffer from degenerative disc disease which impacts my lower lumbar region. As a consequence I suffer from chronic intractable pain. Hydrocodone is effective in relieving part of my pain level so I can be functional and not bedridden. The “Opioid Crisis” is due to street drugs, in particular, Fentanyl and Heroin. Taking away the only thing that makes my life bearable is a unthinking knee-jerk response fueled by hysteria and irresponsible media. Chronic Pain is a real thing and patients with this pain are not “drug-seeking” and the vast majority of prescription opioid patients use their drugs wisely and responsibly. We are human beings with constant pain, not “druggies”.

Rae Warner

I live in Fond Du Lac WI.. in the past year my pain medication got reduced by half. almost every doctor in the state (or should I say the business that controls them) are being forced to outsource their patients to pain management clinics or to reduce their patients medications. losing insurance coverage leaves me in the position of having to reduce me medications to a level that barely touches my pain. Having chronic conditions leaves me uninsurable as it’s preexisting. ..I have no where to turn.

Terryl

Meanwhile, DEA agents have found a man-made plane with fentanyl patches and meth in Arizona worth $500,000, just the tip of the ice berg. The “war” should be on street drugs killing kids, not prescribed pain medication helping chronic pain patients.

Patty

My husband suffers 24/7 after having 6 knee surgeries, 2 back surgeries (Thoracic to Sacrum), cervical neck (Swan Neck) surgery and surgery to fix C1 fracture!!
By midday he is chair/bed bound due to the horrific pain. His pain management physician cut his pain meds after the CDC torture memo of 2016!! Afraid of a DEA raid, he is afraid to increase them. He told me “you should report me to the NC Medical Board for under prescribing. Instead, I sent a generic memo to CDC to discuss under prescribing by our physician vs DEA’s threats and CDC causing the ISSUE TO START WITH. I cc’d Dr Red Lawhern, and he responded with a memo to CDC.
GET DEA THE HELL OUT OF THE DOCTORS’ OFFICES.
Pain patients are NOT addicted—they just want a little part of their lives back!!
The committee should try watching someone they love in pain 24/7—with the reason being some bureaucrats trying to practice medicine!!!