When Pain Kills

When Pain Kills

By Liza Zoellick and Janet Zureki.

Pain has a profound impact on the quality of life and can have physical, psychological and social consequences. It can lead to reduced mobility and a consequent loss of strength, compromise the immune system and interfere with a person’s ability to eat, concentrate, sleep, or interact with others. According to international human rights law, countries have to provide pain treatment medications as part of their core obligations under the right to health: failure to take reasonable steps to ensure that people who suffer pain have access to adequate pain treatment may result in the violation of the obligation to protect against cruel, inhuman and degrading treatment. [1] According to a World Health Organization(WHO) study, people who live in chronic pain are four times more likely to suffer from anxiety and depression. Because of this, WHO has stated that for mild to moderate pain it recommends a combination of basic pain relievers and a weak opioid. For moderate to severe pain, the WHO has recognized that strong opioids, such as morphine are absolutely necessary.[2] Medical abuse of patients in chronic pain and suffering is a violation of basic human rights. Humans in pain placed in cages.[3] Although the 1961 Single Convention on Narcotic Drugs lays out some minimum criteria for the handling of opioids, governments may, under the convention, impose additional requirements if deemed necessary.[4]

In 2016, The CDC came out with its voluntary guideline for prescribing opioids for chronic pain. This guideline provides recommendations for the prescribing of an opioid pain medication by primary care physicians for chronic pain. According to this guideline: When opioids are started, clinicians should prescribe the lowest effective dosage. Clinicians should use caution when prescribing opioids at any dosage, should carefully reassess evidence of individual benefits and risks when considering increasing dosage to 50 MME/day, and should avoid increasing to 90 MME/day or carefully justify a decision to titrate dosage to >=90 MME/day.[5] MME stands for the morphine milligram equivalent and according to the CDC, 90 MME breaks down to 90 mg of hydrocodone daily, 60 mg of oxycodone daily, or 20 mg of methadone daily.[6] Dr. Lesly Pompy, states “This standard is unconstitutionally vague and does not promote scientific patient care”. Even though a Doctor can justify patients receiving more than 90 MME per day, most are reluctant to and some have started force tapering their patients down to the 90 MME limit. Tolerance is patient specific because the scientific laws of pharmacodynamics and pharmacokinetics is patient specific.[7] When it comes to tapering down patients, the CDC states that for patients that agree to taper opioids to lower dosages, clinicians should collaborate with the patient a tapering plan. [8]

Although the guideline is clear that the patient needs to agree to the tapering, many patients are being forced tapered instead and are being left without proper pain control. This forced tapering has many patients have turning to alcohol or illegal drugs to cope with their pain, unfortunately, some with devastating consequences. This practice of forced tapering has also lead to pain patients committing suicide.

The question has been raised, are CDC guidelines are causing more suicides? That answer is not clear because experts believe many suicides go unreported or are misclassified as accidental, often covered up by grieving family members or accommodating medical examiners.[9] Suicides related to pain often get classified as something else like depression, or families are too embarrassed to admit that it was the pain that caused their loved one to commit suicide. Dr. Thomas Kline has been keeping track of patients that have committed suicide on a pinned post on his Twitter page of patients that took their lives after being forced to taper down or completely off of their medicine and shares their stories.

According to the CDC, Suicide rates in the US rose from 1999-2016 by 25.4%.[10] One fact does remain true, pain patients are indeed committing suicide due to their pain.

Some of the strictest laws regarding opioids dispersal is in Florida and Kentucky which limit initial opioid prescriptions to a 3-day supply.[11] I spoke to an incredible pain warrior recently, Trina Vaughn, who lives in Kentucky but is currently making a journey to Colorado because of the changes to opioid laws. Trina is 60 years old and suffers from fibromyalgia, severe osteoarthritis and tinnitus among some other chronic illnesses. She has been medically retired and on disability since 2007. In her town of Bowling Green, Kentucky, she had the same pharmacy and same doctor for 20 years, until doctors were forced to stop writing pain prescriptions and patients were forced into two pain clinics, IPS: Interventional Pain Specialist or CPS: Comprehensive Pain Specialist. Her first encounter was with IPS, an experience I would not wish on anyone, began with being admonished for using the bathroom prior to them giving her a drug test to a doctor who was dismissive of several of her conditions yet after she disclosed five back surgeries became more receptive to pain medication, even giving her a choice of oxycontin and hydrocodone until she expressed that she preferred hydrocodone so she could break pills in half to adjust dosing. When this was revealed he told her that she would take the pills three times a day as prescribed or be dismissed and never allowed to return to the clinic. After reporting the incident, her next encounter was with CPS where she did not fare much better. Though the initial visit with the doctor went well, the next visits did not. Though she made attempt to explain ahead of time what her urine sample would show the doctor interpreted her as “non-compliant” and without an attempt at listening dismissed her as a patient and sent her packing. No prescription to tide her over and no explanation other than “non-compliant.”

This is happening everywhere and because she was left with no where to turn, Ms. Vaughn was left with an excruciating decision to make. Leave Kentucky; leave her husband and move alone to Colorado where she has better prospect of treatment. Most of my conversation with Ms. Vaughn was exchanged via email as she travels to Colorado. I could not help but worry about her on such a long trip, though she seemed very well prepared for it. This is the reality and the effect of the opioid war on patients. I chose to focus on Ms. Vaughn’s struggle because there are many more going through the same thing but without the recourse of traveling to another state to get the help they need. It is inhumane to force a pain patient to travel cross country just so they can get the help they need. It is inhumane to allow the suffering of pain patients who cannot travel and therefore cannot get the help they need. This is where patients become desperate to end the pain. These are the faces of the opioid war.

References

1. Access to pain treatment as a human right. Diederik Lohman, Rebecca Schiefer, and Joseph Anon Source: ncbi.nlm.nih.gov

2. World Health Organization. Achieving Balance in National Opioid Control Policy. Geneva. WHO. 2000 Source: ncbi.nlm.gov

3. Dr. Lesly Pompy, text message interview 7/9/18

4. United Nations Single Convention on Narcotic Drugs. UN 1961 Source: ncbi.nlm.gov

5. Foley KM. Ideas for an Open Society: Pain Management 2002 Source: ncbi.nlm.nih.gov

6. CDC Guideline for Prescribing Opioids for Chronic Pain- United States 2016 Source: CDC.Gov

7. CDC Guideline for Prescribing Opioids for Chronic Pain- United States 2016 Source: CDC.Gov

8. Dr. Lesly Pompy text message interview 7/9/18

9. CDC Guideline for Prescribing Opioids for Chronic Pain- United States 2016 Source: CDC.Gov

10. Balletpedia.com

11. Opioid epidemic: New laws restricting prescriptions go into effect in these states. Source: Usatoday.com 7/1/18

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Gosh I have some bad typing mistakes, I meant to write be sure to attend any pain awarenesss protests/days and let your politicians know you have had enough and will no longer vote fir people that are against helping pain patients. The gist of what I was saying was that you have to get involved by signing petitions, going to pain awareness events, write your reps and let them know if no change is made you will not be voting for them. Does not matter about your political party because this is a human issue. If I am democrat/republican/independent I will vote fir who is supporting to stop this crazy interference in our pain management and medications and all I care about is that they have enough common sense and compassion to see this needs to be corrected immediately. There needs to be an edit button so we can correct typing errors.

That is petition2change.org. Sorry I made a typo.

Yes, there is a class action suit against the DEA you can sign at petitin2change.org and another one against drs. refusing to prescribe fur legitimate pain and suffering chronic pain patients who do not abuse their medhcatioms! Plus drs.of courage are fighting fur us and testifying, there are online and on YouTube with valuable info. They are being in the trenches with us! We have to fight this people by signing these petitions and giungbtomthese pain awareness days to protest shdvket the government and politicians knkwcee have had enough, and that we will not re-elect them. Forget about parties and if you see a politician doing this scale grating abdcfear mongering vote them out, and let others know we will vote them out regardless of party affiliation! I don’t care what part they are in if they are against me, or if they are fur me and millions others then I am going yomdupoort the, because this is not a political issue, it is a life and death issue!

Gn 6.14.2018

Do you think we care about manufacturers or pharmacies? Really? Do you we think that we, the beaten down pain patient, degraded endlessly by the system that purports to serve us, didn’t see this coming? Yup. It sure must be that they (meaning us) need limits! Yup. That’s a solid, small constituent choice, by golly! We’ll show ‘em we’re serious on this pain thing…

Except they ain’t putting fentanyl in pain meds. It’s in heroin. Which is from Mexico. Which is moved cross country between hubs in LA, Chicago, Atlanta..oh yeah, and flying down the Interstate in Vermont. But I digress..

For us, PAIN is a double edged sword. For us, its victims, it defines every minute of each day despite modern refinements of opium that have allowed chronics to function in the world. But don’t kid yourselves. Without our pills we’d be dead. And that, of course, is the other cut. At least then our suffering would be over. But these drugs only allow us life until they are taken away. Then we are junkies. Yup. You can run all over telling yourselves that the problem is us and cut us off. Or manage us with piss tests and Wow! thanks for piling on. You see, it’s not such a great thing to spend day after day, night after pain filled night, twisting and turning to the cruel, uncomfortable master that arrived, unbidden, to rule with such horrid persistence. Honestly, we really aren’t worth being around that much, no not at all. So give us the [edit] pills and leave us alone. You started this and then you blame us because we hurt? [edit] because when your day comes, crying and confused and whimpering on the street, we’ll give you our dealer’s number. Good luck and don’t go looking for advice. We won’t be around.

Donna

I am 53 and on palliative care. I have COPD with pulmonary fibrosis, and pulmonary hypertension. (new spot on upper left lung that has grown a bit..but) I’ve been battling incomplete small bowel blockages, a massive non healing ulcer.1cm deep where my stomach was resets 10yrs ago from ulcers, 5 spinal fractures (one burst), and other stuff I won’t bother about m I have waited for a GI referral since April… I have to go back to one who has limited practice in November. I take the minimum of Tramadol. I am withering away to nothing,.but I push on. I just wanted a bit more time, and relief when things are excruciating. I have stayed home most of the summer , because I have been so sick. I know that with such negligible physician referrals,etc. , and the stigma of the opioid epidemic. I’ll end up having to do the finale myself. My regards to everyone in this horrible healthcare maze. It’s inhumane at best!

Christine

do you have links to the references please? The ones posted are not specific

Melissa

I know I’m 1 of the lucky ones to still be receiving my pain medication. I’m scared every time I go I’ll be cut or cut off. I’m able to have a quality of life right now and I couldn’t make it any other way, I’ve tried everything. We have to fight, we have to rally. Go to don’t punish pain rally on Facebook. There’s a page set up for every state too. I live in Tennessee so I’m on “Tennessee don’t punish pain rally”. September 18th are the rallies. We’ve gotta fight.

Jessica Reible

I’m a chronic pain patient, but beyond that…I’m a mom.
I have a son, age 15, that broke his leg in March this year. He spent the night at the children’s hospital for possible compartmental syndrome & pain control, and observation. When we left the hospital he was given 30 tabs of 5 mg oxycodone. 1-3 tabs every 4-6 hrs. (he is the size of an adult). I diligently kept track & wrote down every time, pill and dosage. The first bottle lasted 2 1/2 days. We went to the orthopedic surgeon that day he ran out & she wrote another prescription for 30. I asked the Doctor what is typical, for this type of injury, as far as using opioids for pain? She had stated “up to 2 wks. is normal”. 3 days later I noticed we would not have enough to last the weekend (It was Friday). I already reduced his pain meds a lot. It had not even been a full week since the break. So I called the surgeon, who apparently left for vacation, and asked for a refill as my son would run out over the weekend. He was denied pain meds by the doctor covering. When I asked why…I was told the covering physician was “not comfortable” with giving another prescription. I explained we had just discussed this with his regular surgeon & she said it was typical for him to need them for up to 2 wks. So, again, I asked why? The nurse said that he would get addicted. I told the nurse that my son can only take these pill by having it
buried in a spoonful of yogurt, applesauce or pudding. He has not mastered pill taking as he hasn’t ever taken pills (not even Tylenol or ibuprofen). He hates taking them & denies them for any sort of headache or pain. I told the nurse this was completely ridiculous that they think someone would get addicted in 1 1/2 weeks. The nurse stated “those teenage boys get a taste for it and the next thing you know they could be doing heroin”. WHAT?! I was furious! My son is not that way. He is a good kid, plays football and has never been in trouble ever. He’s never even been grounded in his entire life. Besides, he would have to carry packages of pudding around with him in his backpack to be a pill popper.

I decided to go to his PCP & he said he would refer to the covering physicians notes & not prescribe either!

This OPIOID EPIDEMIC has gone too far! A child can’t get pain relief either for more than 6 days after a broken leg?!

Betsey

the very first part of the Hippocratic Oath States… First Do no harm! Are there any plans for a class action lawsuit?

Alan Dwelle

Im a 57 y o. Man who as I write this email am in agony.i moved to va.from Washington State I was on methadone for 18 years….I had a spinal laminectomy..then ten yets later fell off a roof at work and fractured same spot.i had to move to va.as my mother inlaw is sick.when I got here I could find NO DOCTOR that would even touch my case. I take 45 mg.a day…but I used to take 110 mg a day…I finally found a doctor.pain doctor.to help…im going to try bupronorphene…but I have to wash all narcotics out of my system before I get the bupronorphene.this is agony….. methadone saved my life..without it I could never have worked…I have been climbing trees and doing logging work all my life….so now .this morning is the worst day of my life. So sick and in pain. I have to drive to Maryland to get to pain doctor..don’t know if this will work..and on top of that im out 2000$ for this doctors fee as my crappy insurance will not cover this!!!!!!!!!!!!

Josh

I also totally get it. I’m 44 100% disabled, was on opioids for around 12 years. I had same things happen to me for so long I stopped taking anything for pain. Now I just live with it. Had back surgery. Also very rare blood disorder which is just straight pain for 10+ days. It really sucks. There is no other way to put it. The everyone who got us here are now the same ones taking it away. There is no easy answer. I spend days in bed it’s hard on the family it’s hard on me but the system is to broken at this point. There really is no good place to go for good care anymore. Drs are scared. Patients are just left with nothing but being treated like a drug addict. Regardless of how many hoops you jump thru first chance they get out the door you go..

The problem is two fold politicians are in the back pocket of BIG PHARMA! They pay the government to do what they want. Second is the illegal drugs coming from Asia & south America. That’s where the government needs to clamp down the crap that come into our boarders. The pharma & government needs to be separated somehow. If our medical system was more attentive to the needs of chronic pain patients and asking pharma to come up with better alternative medicine. I too am tapering with my doctor before they decide to yank me off. There should be a rally clog up the streets of D.C. with wheel chairs & demand change and better care for the people who need it! It is a shame the way government is handling the battle of opioids, it’s being handled wrong. We can only hope someone with care & compassion will help bring change for the better.

Kelly D.

What an important and beautifully written “documentary” of this woman’s struggle, as with so many others. It remains unbelievable to me that the government, doctors and pharmacies can hold this much power over people’s very lives. Everyone is just one car accident away from needing pain medications, some long term. It is unbelievably unethical to remove this basic human right of access to pain medication. I am a chronic pain patient who was forced to titrate off my pain medications this year, and in May 2018 I attempted suicide. I hold on one day at a time now. What happened to the Hippocratic oath to do no harm?

Brenda Bennett

Our very own America is abusing it’s very own ppl! WHY do 99.9 percent of ppl in pain do NOTHING to help pain advocacy groups stop these uneducated dea ppl of the medical field. We have high school educated ppl telling our doctors how to be a doctor & dea has hi school education & they’re telling docs how to treat their patients & our docs have bout 20 yrs of medical education. Im 64 yrs old & have seen a lot of changes BUT NEVER wld I have ever thought I’d see anything like this! Think for just a moment how bizarre this is. If we was prisoners of war I cld understand such insanity. God help America. My families entertainment was going camping. We never realized back in the day that some ticks had Lyme disease nor was southern doctors literate of Lyme disease. If u Google, Dr Joseph Burrsacano, u will understand that Lyme disease if not found in early stages is fatal & us being from Texas was misdiagnosed for too many yrs. I’ve lost my 21 yr old son & my lifetime husband & me & my 41 yr old daughter suffer everyday of our lives. Chronic Lyme disease hurts & the best description I can tell u is it feels like someone is beating ur bones wth a hammer & migraines are continuous, etc. It goes thru our blood & drops off little eggs in our organs therefore slowly killing our organs. We have no immune system so we’re sick often. I learned there is different kinds of heart attacks. Most ppl have heart attack cause they’ve eaten wrong all their lives & this causes arteries to be clogged & their heart can be fixed. I had a bacterial heart attack from having Lyme & these kind kill ur heart leaving u WTH heart failure & ur given short time to live wthout a heart transplant. My daughter had one also. We have kidney failure. And a drunk driver hit us head on leaving us with inoperable ruptured disk, osteoporosis, etc. I also have rhumatoid arthritis. We are just one of the few Americans that live in daily pain. One day in everyone’s life they WILL have pain & there cld come a day that ur child, mom, dad, & other loved ones will have pain & docs won’t be able to be able to give them anything for their pain. Plz join our pain groups? We are on Facebook & Google. US Pain Foundation, Chronic Pain Advocate Group etc. God bless America, brenda pitts bennett bbpittsbennett@gmail.com

Mike N.

You should look into the VA policy on chronic pain for the Northern California Medical Center in Mather, California. With a pain level of 10/10 for 4 months, I was finally able to get a minimum dosage of Tramadol and Gabapentin (which does not help pain caused by psoriatic arthritis). I was told by my primary care physician, “Even a weak dosage will cause you to be in more intense pain after a week of use.” That’s not how tolerance is built. I was also told that I need to be taken off Omeprazole (which I need to take because of all the nsaids I am required to take to control my pain, which do nothing) and that I should consider not continuing immunosuppressants as I need to give my liver time to regenerate from non-alcoholic fatty liver disease (again, a byproduct of years of nsaids and also this time from immunosuppressants). I don’t know why they bother asking your pain level at the VA anymore, they don’t/won’t do anything for you to take care of it.

Eric F Powers

There’s only one way to stop the madness. LAWYERS! You’ll got to take this to federal court. It is your constitutional right to take the medication that a trained, licensed, MD has proscribed to you. Period. No one can say different. Some how this right has been overlooked. If your “Neurosurgeon” says you need to be on the dope, or an up grade, then who’s to say different? That’s what his license is for. No Pain Clinic, Politician, or DOJ [edit] can say different. I see us winning. Don’t got the money? Ask big Pharma to foot the bill. I bet they would.

Karen Anderson

I stopped taking opioids for my chronic pain from a near fatal car crash.
I also have osteoarthritis, bulging discs, and sciatica. I saw this coming and I found a great alternative called Kratom. It is an herb in the coffee family. It is amazing. It was a Godsend for my husband and I. He has aggressive prostate cancer that has spread to his bones. He is given 2 Hydrocodone 7.5 per day. He suffered. Now I learn the FDA and DEA want to ban Kratom. It is perfectly safe. The American Kratom Association is fighting this. If they ban this, I honestly don’t know how we will cope. I am 60 and my husband is 70. Our big brother government needs to butt out.

Jess

I too have had the same problems with pain medication in the past Buy my pain management specialist. I have fibromyalgia, herniated disc, degenerative disc disease. I have been depressed from being in pain and I have been kicked out of pain management for taking less than prescribed, because it wasn’t the amount that my prescription was for. I was taking less they kicked me out because I was not taking three a day as I should. for someone to take more medication than they need to and yet they want to say it’s because of people abusing the medication. I believe it’s because of the doctors forcing you to be on their schedule for pain, and that doesn’t work for real people who have real pain. I have turned over to an alternative care center for medical marijuana. I know there is a bad hype, on it, I was skeptical too but it has been a life changer for my pain and my anxiety. It’s all natural the doctors don’t make me feel like a bad person, they don’t force it on me, they always stick with take less than what you think you need and it’s actually true. Getting it through the state versus getting it off the street are two totally different things getting it off the street is where a lot of people got the wrong idea about it and the effects that it has. When you get it through a medical dispensary it’s not laced w anything, nothing sprayed on it.It’s all natural no effects on your liver and pretty soon they will have edibles for those that do not want to smoke or Vape it. Log onto the medical marijuana registration for whatever state you live in an make your 1st consultation, you won’t be sorry, And your pain will be a lot better I promise.It’s an alternative treatment center to those that are not getting help for their pain it can’t hurt just to try there are CBD products also that have no THC for those that are weary against the THC. CBD is strictly just for relieving pain and inflammation.

LEAH

Thank you for saying this treatment is inhumane, I hope someone can get a lawsuit going for all the malpractice happening. I’m lucky to have a great pain Dr but I constantly worry about when he’ll give in to the government pressure. I have a pain pump, 3 neuro stimulators and a host of medical issues. I almost lost my SS disability case because I didn’t frequent the emergency room but I had to explain that I was accused of being a drug seeker so even when I scream and cry and want to eat a bullet, I don’t go to the ER. Thanks to the UNaffordable health care act, insurance has deemed several treatments that helped me as investigational even though they used to cover them. Now the government is playing Dr and trying to tell everyone to just learn to live with pain. I pray they get a taste of living with chronic pain and see how well they deal with it. It’s so easy to criticize when you’ve never experienced chronic pain. If I lose my Dr or my pain management medication I’ll be joining the suicide statistics.

Pat

I feel like a criminal! Pill counts and random urine screenings because I am suffering!
These arbitrary regulations hurt the people who need these meds the most!

Raymond Fryman

I’m sorry for the pain this woman went through. I live in Florida, and wished I’d never left Calif. . When will they realize this is cruel and inhuman punishment to thoughts of us in pain. They wouldn’t do this to their pets. I’m on the edge now, and could be gone soon if things don’t change.

Barbara

I think the only way we chronic pain patients can change what is happening to us is to be sure to VOTE! This administration does NOT care about anyone. We need to vote in people who DO care.PLEASE BE SURE TO VOTE!

Jason necker

After 24 years of physical labor on a slipped disc due to a sneeze 25 years ago not realizing the effect it would have on my L5-L-3
With MRI in 2008 & 2018 has my L-5 now down to bone on bone.. Insurance wouldnt cover the MRI In 2018 due to there knowledge of perscribed opioids… & insurance would not approve my surgery & me not having the money to pay for surgery has me in a bind.. being a sole properiter of a drain cleaning company.. it seems the new regulations are not trying to improve are quality of life… that everytime new regulations are released there is up swing of illegal opioids that law enforcement has to deal with. The best advice i can give for the new blue collar work force is to see the chiropracticor 1 or 2 times month to set & align your back.. that the knowledge we know should be used in preventing future opioid abuse.. for some of us who destroyed are backs working should be allowed a better quality of life…

Valerie Gomez

My younger brother, he hung himself christmas eve 2 years ago. His spine was made out of titanium. Even though, he felt he had no life beyond his pain. He felt that his doctor did not have his back and felt he was alone in this problem. Do you know how bad you would have to be to even consider hanging yourself. Thanks a lot internet, for explaining exactly how to do this so that you broke your neck just right and would not survive the attempt. PAIN IS REAL people, so is the depression that festers alongside it. And if the internet hadn’t gave him the advice just maybe he would still be here with us?

David Sheehan

I’ve got excruciating pain and suffering from a botched Spermatocele cyst surgery what can i do ?

Nancy Hamilton

I, too, am facing problems getting my pain meds. I moved to WV from Florida to be with my 1st grandchild, and I was shocked to find that no one was willing to continue prescribing my meds. In Florida, I had a kind, compassionate physician who understood my needs. I have had 5 back surgeries, have rheumatoid arthritis and lupus. I am 63 years old, never drank alcohol or abused my prescriptions. I have been made to feel like a street druggie. I am considering returning to Florida every 3 months just to get my pain meds. Something needs to be done for those of us who must suffer every day from constant pain. Physicians – walk a day in our shoes!!!

Susi

I have a severe scoliosis I developed in adolescence, and at 63, has obviously gotten worse. Just 10mg of Norco a day enables me to work and take short hikes. My Kaiser doc refuses to give me any narcotics at all, and wants to put me on 3 other different meds, one of them being a tricyclic antidepressant as well as gabapentin. This seems rediculas to me considering the side effects, when a small amt. of opioids do the trick! I can’t take non steroidle meds because they cause terrible abdominal issues. I have become depressed and don’t want to do anything much anymore. May have to quit my job as a part time wound nurse. This extreme reaction to the opioid crisis is really effecting people’s lives in very horrible ways!

Jack B.

As a chronic pain patient for nearly seven years, I can easily identify with Ms. Vaughn’s dilemma. I’m 74 years old with no history of drug, alcohol or substance abuse. But a year ago I had to change doctors and was informed I’d have to reduce my dosage of Hydromorphone by 25%. Every three months I have to submit to a urinalysis and the contract I had to sign is so similar to what a parolee might sign that I truly feel I’m treated like a criminal. It’s a horrible feeling!

Kelli Davidson

The more I live through this nightmare and the more stories like mine that I read, it makes me exhausted. It is time, right now, not later to stop this nonsense. Alcohol and cigarettes are available for purchase in every state …the hypocrisy of this war on opioids is baffling to me.

Ellen

Why are doctors not loosing their licenses; this is patient abandonment and definitely human torture I remember the Pain report story of the policewoman, mother, wife who committed suicide She was as report already traveling to California to see chronic pain warrior Dr Tennant but god bless him retired after while on vacation his home and office were raided and at 71 years he decided to retire He did nothing wrong and some family practice doctor is being pain $250000 by DEA to decide which pain doctor to harass Not a family doc specialty and the patient had no other doctor to turn to and she committed suicide I take a ferry for an hour each way to see pain specialist I have not mild but severe pain from a rare type dopamine dystonia that presents more in adulthood but teen scoliosis is related I gave natural birth to two children but knew pain was part of process and would go away but an illness like CRPS ( which can be caused even by not treating severe acute pain aggressively) dystonia trauma accidents and many I have learned here from others are not going to be cured the Sinemet makes me ill if I am not careful it triggers severe migraines/vomiting I finally got more functional on pain part and for few years except ethically stopped driving I at least did not have fear suffering or be dehumanized in ERs I follow rules
but I fear my own pain specialist is leaving pain management Hopefully another person can “fill her kind shoes.”
I devoted my life to cancer and AIDS nursing; mostly bone marrow transplant Patients using these medications need them and more than one study says less 1% have problems If a doctor denied heart surgery or chemo or insulin or blood pressure medicine he would be in trouble for not providing proven treatment and taking pain away now as a fifth vital sign big mistake UW noncancer Pain Clinic will not
Use opiods period but all these rules mean nothing because the rich the VIP those that can stop this do not have to worry
Please stop the unneeded suffering suicides fear inhumane treatment We are not addicts and CDC admits death by prescription overdose was wrongly lumped with
Fentanyl laced heroin and prescriptions were stolen that led to OD not by the subscribed patient We need a good human rights lawyer pro bono most of us are
Disabled Human rights coalition equates this to torture, nerve gas etc Now going after IV products needed in hospitals and patients blood pressures go so high from pain they have had strokes !!

Alan Edwards

The WHO guidelines should be followed but aren’t. The CDC illegal guideline of 2016 should not. It and the Controlled Substance Act have both been disastrous, deadly, and have divided pain patients and healthcare providers.
Doctors have become abusive to me and others but we have the disease. Some Pharmacists are also surly creatures. All IPP are in a police database linked to the pharmacy. Pharmacists gossip about any patient given a “controlled substance”! People without compassion or heart or morality have been created. The government has caused a medical disaster. We are like Dustin Hoffman having our teeth drilled by Sir Laurence Olivier who constantly says “Is it safe?” I apologize to the late actor because I have seen and felt worse pain and been treated as badly as the poor lady in the article.
Pain does atrophy muscle, etc. I cannot walk without crutches. Although I have Cerebral Palsy, pain stopped my exercise and therapy. During hourly high pain periods, I have to lay in bed to prevent stroke.
Recently, my neurologist could not link to my local pharmacy computer. I was accused of obtaining prescriptions out of state. I said no, you are in error, and asked if I could borrow the laptop being used and assist. She said no and my records immediately appeared. I could see my records on the screen before I was accused. This type of behavior is criminal. My medical treatment is now so below par, it is unbelievable. All they care about are the voluntary CDC Guideline of 2016, forfeiture of property, and loss of license. Forfeiture of property is now more common and profitable for law enforcement. A gold mine of revenue and personal property now can be taken from IPPs. So said Sessions. One man had a few pills too many stored. He was jailed and his property taken. He was single and wheelchair bound.
The 2016 CDC Guideline need to be revoked along with the Controlled Substance Act. Sorry DEA.

Steven

Of course of pain patient is going to seek to end the pain rather than continue to be tortured endlessly. How could there be any surprise about that? What’s more, even if they can travel the chance of them receiving care is remote. Almost no one is accepting new patients that will be needing a script for opiates especially High dosages which didn’t used to be high. The government is ending the life of the pain patient. Who can stop them? If the doctors had a union maybe they could stop this heinous act of tyranny and torture right out in the open for all to see.

Yes if I had the money to move to Colorado I would. But I do good to come up with $1 or $2 a day for kratom or else I would still be praying for death. Kratom is the thread my life is hanging from and I fear the drug Nazis are going to cut ✂ my lifeline and let me fall. Please urge Roche to make abuse resistant Pantopon vaporizers with serial numbers to discourage diversion and timer chips to control puff duration and frequency. If these were readily available to all the opioid death toll would drop tremendously saving addicts lives while stopping chronic pain patients needless suffering.

Shell

The government took it to far

1oldbroad

This was very informative to me and makes me angrier at our lawmakers & government agencies (CDC, DEA, VA) for their ignorant and ill informed views, decisions and actions. We are not drug abusers. We are trying to live a life better then the alternative we are faced with. Yes, there are a few who abuse and drug seek. But a country wide data base could be beneficial to keep track of the number of meds used. It’s a matter of being able to either participate in their life or not function…..which, in my eyes, has only one option. Pain medication. To get high and to get relief are two totally different reasons for taking opioids. We have a right to get relief.
Thank you for your article.

Mark Ibsen MD

Yes.
Pain is a terrorist

Diana

This is heartbreaking. The politicians just pose and posture and pat themselves on the back when they pass these excruciatingly horrible laws and then act like they’ve saved lives. If they want to stop overdose problems get rid of HEROIN and illegal street drugs! not prescription medicines.

Kris Aaron

It’s estimated that one-fourth of the people in America currently are living with chronic pain. The only upside to the hysteria surrounding prescription opioids is that the very “drug warriors” who now deny pain relief to damaged people have a good chance of eventually needing the same drugs. Let’s all hope their injury or disorder leaves them moaning in bed at 3 am, desperate for relief but unable to obtain the opioids they were so quick to deny to others. Let’s hope they’re treated by their medical providers with the same cold, uncaring attitudes they use on us.
Just wait, you arrogant, healthy fools: Your turn is coming, and you WILL get a taste of what we’re being put through! Hope you enjoy it as much as we do.

Gretchen

I’m do not like that the opiat epidemiic is even connected to chronic pain or disabled people IT IS NOT our fault that street drug abbusers are allowed to be put in the same category as chronic pain paitients or disabled The chronic pain paitients and disabled are fighting to live I don’t think the street user cares never thought in America I was ever going too be called guilty for something others were doing wrong for the chronic pain paitients and disabled there is no innocent till proven guilty we have been called names and thrown in a pile with the street user it is mental abuse too tell a disabled person you need rehab when most of us have had to deal mentally and physically with what our disabilities are and talk ourselves into what has happened to us in the first place I struggled tremendously too still feel like a member of society especially when we aren’t rehabable and we are what we are you can take our meds away and our health problems are still there and most will die or suffer till we die a lot sooner this is torture I also see in my area the Heroine and Fentanyl users being arrested slapped on the hand and turn back on the street to OD latter the same day what is that I say stricter law for the street user leave the chronic pain and disabled alone what is wrong with our law makers the lady from Kentucky is in my thoughts and prayers for I know what she is facing and have had to do this myself God bless her and Keep her safe in the journey too survive and all chronic pain and disabled paitients THANK YOU TO all the wonderful people who are trying their best to help us

nana

I Also moved but not for pain reasons. I moved due to the fact I had to have a complicated surgery. I would need help. We arrived here October 28th. I was in the ER the 31st with BP 127/117.

Due to the opioid hysteresis I believe, there is a critical shortage of Doctors here in Missouri because of the opioid hysteria. I had cardio-thoracic surgery in Florida on Feb. 5th in order to avoid a nissen fundoplication,. The frankensurgery with the high failure rate. Thank God that cardio-Doctor saw me based on chart notes and studies. My stomach had crawled upside down into my chest. I was aspirating by the time I got to him. They had to rule out heart attack before they could do pre-op. But surgery was successful.

Here, the only Doctors are with Cox or Mercy and they have it pretty tied up. . No Doctor here will see you without a referral. Even with upcoming surgery none were willing to make an exception and see me any sooner. I did see a temporary one who said she would see me until I saw my D.O. on July 1st. She attempted to have me sign a pain contract even though she was not prescribing any pain medicine. I said what? They didn’t push it.. When I had an appointment her nurse called and postponed it without making a new one. (“Doctor is taking a leave this week. Appointments have been cancelled.”) I had to fly back to my surgeon to get an egd. Now because of possible complications at this date they want another egd. But GIs do that and I don’t have one.

The July 1 Doctor took a leave and I was bumped to August 29. Why do doctors put a person back to the end of the wait line when it is not their fault they don’t get their appointment? I have quit taking opioids despite the fact I need them. I sleep about 2 hours at a time. About 4-6 hours nightly. So because I have a rare genetic disorder called Leser Trelat I am seeking help from a university medical center over 3 hours away. I think stress has made it come out again. I am miserable. I want to go home but there is nothing left for me there.

Except for my surgery I take no opioids now. I am in severe enough pain to be incontinent but I refuse to lower myself to “interview” with them. Isn’t that just the way your healthcare should be?

Terry Shapiro

As I said in my comment. Time to stop crying and to be seen and herd!!!!!!!

Terry Shapiro

ALTHOUGH all your statements are fact driven. DO YOU REALLY THINK THE BUREAUCRATS IN WASHINGTON READ THIS OR EVEN GIVE A DAMN?????? NO if we CRONIC PAIN PATIENTS do not come together in some way. GET USED TO JUST PISSING AND MOANING ON A PAIN BLOG!!!!!! Which I’m sure help a hand full. BUT PEOPLE THE POTS RUNNING OVER. I broke my neck in an auto accident in 1996 in two places. In the next three yrs. I had to have two more neck surgeries. For ruptured disk and tried to take some metal out. It was. Unsuccessful. In 2000 I had to have an anterior-posterior lumbar fusion of L3,4,&5. This is a two part surgery. One day they open your stomach. A day later the do the back. ANOTHER WORDS CUT YOU IN HALF. In the process they found that my back bone was almost gone. A hole in it large as a silver dollar. They had to use cadaver bone mixed with mine and 360 degree cage it. I developed R.S.D. or C.R.P.S. What ever they are calling it these days. And to top it all off. My fusion has broken down. Leaving me with hundreds of bone fragments in my lower back. Which has left me with neuropathy in LEGS and feet. And three to four day headaches. PEOPLE I’M SICK BUT I STILL HAVE THE ENERGY TO DO MORE THAN CRY ON A PAIN BLOG. LET’S UNITE AND FIGHT. UNSEEN UNHEARD THAT’S WHAT WE ARE. LET’S BE SEE AND HERD.

Cynthia

What an accurate article of what many have had to do and are considering doing, such as myself if I lose my medications. We all need to contact representatives with our stories though I know it is a lot to ask because sometimes all one can do is try to get through the day. For those who cannot, well it breaks my heart. I have just read through many of the NPC posts and I am in tears. Some of these doctors are unbelievably horrible and our using this to make even more money with no compassion. If you lose your doctor make sure after you find another that a complaint is filed with your state medical board, even if it is anonymous. Tell your story to every person in government. On a personal note, I have endured pain in various parts of my body over my lifetime and it was not until after countless doctor visits, knee replacements and torn tendons in my shoulders did I (not a doctor) think of having my spine evaluated. I had an undiagnosed scoliosis of the lumbar and thoracic spine, spondylothesis of L4-L5 with pars defect along with a shorter leg that if diagnosed as a child would have prevented much of my degeneration. Working all my life out of alignment has broken down my extremities causing pain whenever I do much of anything, even typing this post. I was told I had fibromyalgia but it wasn’t until I had an MRI of my shoulders did my doctor realize the extent and cause of my shoulder pain. Anyone in pain should start with a spine evaluation and work from there. Unfortunately many do not have healthcare, which I didn’t until it was too late. But we all must fight, that’s all I can say. Are we allowed to copy these NPC posts and send them? Good luck everyone.

Acker Beth

Since when did the medical community feel it is acceptable to treat pain patients like second class citizens??!! The fact that we need opioids for pain relief doesn’t make us addicts, it makes us want enough relief that we can function like a “normal” human being! I bet the actual number of patients abusing their pain meds is a fraction of the number of patients a pain doctors office sees, yet all are handled like we’re guilty of abusing even though we have years of medical records that show otherwise. Isn’t is bad enough that we’ve been through so many procedures, surgeries, doctors visits, pharmacy scrutiny just to scratch the surface that now we have to fight to justify wanting to have a less painful existence??!!! When are we not going to be considered collateral damage? When are we going to be given the respect that has been ripped away so harshly?! I feel nothing is going to change until there is a class action suit bringing to attention that politicians, pharmacies and others that have no access to our medical records are deciding what we need versus a trained medical doctor! Why should anyone other than our doctor, who has the facts via medical records, have any right to tell us how much or how little pain medications are needed. We all have different conditions, pain tolerances and needs that much more needs to be considered besides what scale, by legislature, we belong in!!!!! Wake up medical community, your oath “to do no harm” means nothing these days and you need to help take it back!

Johny Pain

It’s very hard being forced off medications that have giving a quality of life. The pain is horrid can’t eat or sleep or enjoy life at all. Life is hard but shouldn’t be this miserable. Thanks for the well written article. I also live in KY.

mom n gma

Thank you for this story. I too have had to make hard painful decisions to leave my family in order to find treatment for my pain. I went from WA State to Arkansas to Mississippi, then finally Montana where I’m lucky to have found an awesome caring compassionate Dr. Am I Dr shopping? No. Asserting my rights as a person and patient to find the right Dr and medical care for myself and my needs? Yes, that’s my right. My medical team works for me not for the CDC, dea, fda, politicians, law makers, etc, regardless of how my care is paid for. Before my current medical team I was contemplating suicide to end my pain and suffering. I informed my kids and family of my intentions, letting them know I can’t live this way anymore, that this has nothing to do with them, that I love them so much and to please forgive me and go on with their lives. Much to my surprise, they understood, were supportive, but they were hurt also that their mother was forced to endure so much pain and suffering and had come to the point to end my life. They are angry at the medical community, which they work in, they’re angry with the government for hurting not only me but so many others they’ve witnessed become addicts from turning to the streets to relieve their pain or who have killed themselves. They are angry at all these people involved who nearly caused their mom to take my own life. Sorry to rattle. I’m hurt and angry too. There’s no excuse for what’s happening. We are lumped into the same group as addicts. We are not addicts. We are responsible pain patients who deserve the best treatments possible just like everyone else. We are not being heard. They don’t care. People are fighting back but we’re wearing down. How much longer will this continue? When will they listen and hear us? For now I’m one of the lucky ones who found treatment but that can change at any moment. If I lose my only way to live a semi normal life again, I’m done. I can’t fight anymore and my kids and grandkids will lose their mom and Gramma thanks to the government whose killing us. Hope I made sense. Sometimes I keep rattling when I should stop. Thank you.

CDCC

I have been FORCE TAPERED OFF one of my pain medications. The NP said the Dr was taking all patients off with no reason… After toyally destroying musculoskeletal & endocrine system with over prescribed Prednisone for years- they are responsible for my physiological corticosteroid/prednisone dependence; I can’t get below 15mg without my whole body going into dangerous inflammation- they just increase the prednisone. These criminal medical professionals should be locked up.

Anonymous

I drive from North Carolina to Connecticut monthly for the same reason.

Barbara

Many thanks and praise for posting this informative review of current news on Pain, Meds & Suicide. All U.S. medical providers NEED TO KNOW MORE about us chronic pain patients and the stresses we face. I’m put out monthly by driving 10 miles to my primary Dr. for a written prescription; I feel so angry that others have to do without or travel to another state just to ease their constant PAIN. Suicide is not the answer but I cannot imagine my life without adequate pain relief — YES IT IS INHUMANE to withhold medical treatment for those in need. The current “War On Opioids” is doing more harm than good; how about a “War on Pain”?