I Am: An Un-apologetic Opioid Patient

I Am: An Un-apologetic Opioid Patient

I take opioids. I have been taking them now for almost 4yrs. Opioids don’t eliminate my pain completely, and there are some days that I still can’t function, but they have allowed me some semblance of a life. I can not emphasize semblance, strongly enough. My world absolutely changed when I began experiencing pain and the symptoms of my chronic illness, that I did not know at the time. I pushed myself through it brutally, until I couldn’t do that anymore either.

Before I became sick and plagued by pain, I was an active mother and student, trying to finish my degree at the University of Houston. I loved yoga and while I still practice, it is very cautiously and with different expectations than what I do now. My dream was to continue school and either get a Master’s or a certification that would allow me to work in public health. I love contagious disease. That sounds grim, I know, but it was a passion of mine to be able to protect people from unseen killers, of endemic diseases. I wanted to protect my community. I never got to finish school, one class shy of a degree, because my health hasn’t been very cooperative and my pain makes it difficult to focus.

Liza Zoellick

I take opioids regularly throughout the day in order to blog and participate in my family without the pain preventing me from enjoying life. I still need help with every aspect of my life, and without my children and husband there to assist, I am not certain what kind of life I might be living. It’s easier asking my children for help now, but when they were younger, I often didn’t and pushed through the pain which would leave me useless for days. How do you ask children who are in trying to juggle a full-time job and college courses, or high school classes which include dual-credit, to take time out to help you with chores that are your responsibility? As a mother, you want them to excel and do better than you did and while having them do their own chores like: cleaning their room or cleaning their bathroom and doing their laundry is acceptable, things like: taking me to doctors appointments because I can’t drive, or making dinner because I can’t, or picking up and taking siblings here and there because again, I can’t drive, make you feel guilty. I didn’t have children so they could take care of me. My chronic pain took away some aspects of motherhood, and also took away some aspects of my kids’ childhood.

I’ve taken other pain medications. A whole bunch that I either didn’t tolerate in some fashion or simply didn’t work as well as the opioids. Do I want to take opioids? Not especially. I take a lot of medication. I often worry about the effect these medicines are having on my liver. After taking them for nearly 4yrs., I also know their effectiveness is beginning to wane. They are just not doing what they used to which leaves me in pain again, more often than when I first began taking them. This, of course, makes me wonder what next? What drug will they eventually try that will also wane too after a few years? But the flip side, the person still dwelling within me who wants to experience as much life as I possibly can and enjoy it without being in crippling pain, doesn’t care. Whatever the next opioid may be, I will try it because to not take these drugs means to give up and die. I’m not ready yet. Sorry.

Which brings me to this opioid war. I get it. I get that people have lost loved ones and I understand how tragic and senseless it is. What I do not understand and what I read and hear time, and time again, is how opioids should be abolished. But which opioids exactly? This is the blurry line which is affecting all pain patients and which angers me. For example this quote from CBS News: “Approximately three-fourths of all drug overdose deaths are now caused by opioids — a class of drugs that includes prescription painkillers as well as heroin and potent synthetic versions like fentanyl.” [https://www.cbsnews.com/news/opioids-drug-overdose-killed-more-americans-last-year-than-the-vietnam-war/] You see information like this and the average reader is only seeing the first part: three-fourths of all drug overdose deaths are being caused by opioids. Lost in this message is the latter part, explaining that these drugs include prescriptions, heroin and synthetic versions like fentanyl. Neither do you hear things like: Synthetic opioids, like fentanyl, are the main driver of drug overdose deaths, making up more than 28,000 of opioid-related deaths in 2017.” And then even less are you hearing this: “Opioid prescribing has also been on the decline since 2010 and the number of prescriptions filled at retail pharmacies is at a 15-year low, according to the U.S. Food and Drug Administration.” [1]

These missing parts are an incredibly important part of the bigger picture. The bigger picture which includes patients who are suffering and needlessly dying because they aren’t receiving adequate pain treatment. We’ve gone from a period back in the 90’s which (and no one argues this), people were being over-prescribed opioids, to a period now, on the opposite of the spectrum, where people are being under-prescribed. Both sides of these extremes have consequences and we are seeing them now, in the preventable deaths of patients who were under-prescribed pain medication. You are hearing about cancer patients being denied morphine, until their final weeks after terrible suffering before their deaths. [2][3]

You are also hearing about post-surgical patients being given only Tylenol for hip replacement surgeries, despite the amount of pain afterwards. I’ve had total left hip replacement and I can’t imagine being able to do the required physical therapy without the opioids I was given, and the unnecessary suffering truly boggles my mind. [4]

I say you are hearing and seeing this information, but the truth of the matter is that you aren’t hearing or seeing about it as much as you should be and because of that, chronic pain patients are suffering out there. People in my community are dying because of the lack of information and the mis-information regarding opioids. Every time I am on social media, I will find articles being discussed about deaths caused by opioids. Just skimming through comments, I will read things like: It’s big pharma’s fault, all they care about is money; There’s a lack of morality within society when kids are dying from opioids and they continue to be doled out; Opioids need to be abolished; There wouldn’t be addicts if the drug was taken away. Comments like these, make my heart sink because of the black and white nature with which this Opioid Hysteria is being viewed. Opioids are not the enemy. Patients who need these drugs are not the addicts (though admittedly, a small percentage from this group do become addicts) and people who need these drugs are dying, because doctors are being criminalized for prescribing them, losing their jobs and making it more and more difficult for pain patients to be treated. The world had gone crazy and those suffering are being made to suffer more.

I am a pain patient. I take opioids and I’m un-apologetic about taking them. I’ll also continue to fight for those who may not be able to themselves, to end the needless deaths and suffering which have become the cost to this ridiculous war waged on opioids.

[1] https://www.superiortelegram.com/news/government-and-politics/4574090-advocate-opioid-crackdown-had-chilling-effect-those-chronic

[2] https://www.reuters.com/article/us-health-cancer-idUSKCN1PP26X

[3] https://www.bendbulletin.com/localstate/6033839-151/opioid-limits-hit-hospice-cancer-patients

[4] https://www.acsh.org/news/2019/03/13/oral-and-iv-tylenol-work-equally-well-hip-replacement-pain-do-they-work-all-13877

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Authored by: Liza Zoellick

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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Larry M Collins

I am so tired of reading all the different articles on how the CDC 2016 Guidelines created a new crisis in the US. The CDC is solely responsible for creating this crisis; the needless suffering of millions of people that have been medically diagnosed with chronic pain, but who can no-longer obtain the prescription pain medication that they so desperately need in order to have the quality of life they once enjoyed. Because of what the CDC was permitted to completely get away with, millions of people have been negatively impacted one way or another. Some by the horrors of opioid withdrawals, some by forced tapering, others forced to seek out illicit pain drugs like heroin or fentanyl from drug dealers, and others to commit suicide to end their constant chronic pain. Absolutely nothing is being done by members of our government or those who are in the healthcare profession to fix the chronic pain suffering that is currently going on. All this cheap talk by members of our government and by healthcare professionals, who appear to be concerned, is really nothing more than a “smokescreen”. They are now trying to backpedal and hope that they can somehow appease the American people and chronic pain sufferers by saying that they are working day and night to find a solution to this new healthcare crisis. Once again, they are trying to deceive those who are suffering daily from chronic pain. The truth is: is that absolutely nothing is really being done to help restore the pain management/care and pain control that millions of chronic pain sufferers have lost. All this needless suffering going on just because of how the CDC chose to respond to the opioid crisis. Suffering because of doctor abandonment, forced tapering of pain medication, and those that were forced into opioid withdrawals. Enough talk already, restore the “patient rights” that were taken away – the right to receive quality healthcare and appropriate doses of pain medication!

Bonny

You couldn’t have put it more concisely. Thank you. Everyone… INCLUDING THE MEDICAL COMMUNITY should read this. This leaving humans in terrible pain because of panic MUST STOP!!!

Chip Kalvin

Ditto.

Dar

Hold Andrew Kolodny, and the others, harming and killing off pain patients accountable now. Why must we wait? Our civil rights are clearly being violated, and doctors took legal and moral vows to cause no harm, but they are being forced to follow guidelines that are do not allow them to treat patients properly. It is time for the guilty causing such terror, and abuse of power to stand trial, and face crimes against humanity, along with other charges.that have created a crisis of pain, and indignity. Let the trials begin. Give patients back their medicine. Let the real truth be heard..

Steve

I have been fighting with workers comp about my pain for about 3 years.I was told my pain meds would soon be taken away, now I have a Pain pump inside me . Monkey with a button!
Not lol😞.

Rex Cruciatus

Can we please separate fentanyl analogs (illegal, usually Chinese) from legal Fentanyl? The illegal stuff is what’s laced into heroin, which street drug users overdose & die from. Some people are prescribed Fentanyl patches from pain specialists and their pain is helped greatly by it. But you won’t ever hear that in the media or how those with intractable pain are helped by opioids.

Speaking of info that’s not true, when the CDC says that “28,000 people died of opioid-related deaths in 2017”, first you need to differentiate those who die from illegal vs legal opioids. Then you need to understand what an “opioid-related death” is. That’s one where someone died & just happened to have an opioid in them. So if you die in a car accident and happen to have a trace of a Tylenol #3 in you. THAT is an “opioid-related death”. Or let’s say you’re an Intractable Pain patient taking the usual 1 long-acting/ 1 breakthrough meds, then die from any reason at all, like say being shot. Your death will be counted as TWO separate “opioid-related deaths”. How many ppl in a state-monitored Pain Mgmt pgm died from overdoses? It’s a tiny tiny fraction of 28,000. And even those were far more likely caused by disease processes other than opioids. I could go on and on. Point being, once PROP took over the CDC, their statistics became complete garbage. Read Dr Josh Bloom’s work at ACSH.org. Basically, the statistics you see regarding opioids are a joke designed to scare the public b/c it translates into more money for certain groups.

The bottom line is if you think there’s propaganda, disinformation & lies in our politics, it’s worse with stats & reporting on opioids. Also they do NOT make IP patients euphoric!

(Note I don’t mean to sound like I’m “promoting” them AT ALL or to be used by people other than IP patients. I’M NOT!!!! I just don’t like the dishonest info on them)
Also, you may think the effectiveness of your opioid therapy has waned, but try going w/o it.

Michael

Wonderfully written Lisa, as always,you have the magic touch when it comes to putting the message out. We live here in Oregon, and the Pain Clinic i was treated at for over 12 years is now telling new patients that “The clinic no longer prescribes opoids to new patients. WHY do they exist? I was just told by my osteopath that i need both thumb joints on both hands replaced. I told him i will NEVER have surgery at our local Hospital because they grossly under-treat pain to the point of sadistic torture. My brother-in law’s older brother, a Navy veteran suffering from Agent Orange exposure, comitted suicide because the VA took his opoid medication away. He could not bear the pain, so he went out to his wood shop and cut his own throat with a kitchen knife. His 19 year old son and 16 year old daughter..teens….found their father dead in a wheelchair covered in his own blood. My brother in law is so devastated by the loss, he has shed 50 lbs..and is barely eating. THANKS CDC, DEA, FBI and all of you Anti-Opoid Zealots, for the suffering you have caused, because you ingnore the REAL problem which is all the illicit drugs flooding through our south borders by the Mexican Cartels, because it’s easier and SAFER to attack innocent patients and the doctors treating them. You don’t want to do your jobs for fear of reprisal by the Drug Lords, and risk looking over your shoulders for the rest of your lives. Don’t tell me IT AIN”T SO…i know it is…because i have been in your shoes.!

I agree with you 100%.

Cindy y the CDC does have a lawsuit against them right now for lying.

Lisa I too take pain ,meds from my Pain Management Center ,for 16 yrs. They do wane. But try going without them, you’ll find they do work.I also wondered about my liver, but your GP should be doing blood work at least once a year. Mine is fine. This so called (Heroin) Fentynal &Crack is not even Heroin.Right now the way things are
going in this country Im happy with what Im receiving. The war on drugs started with Nixon in 1971. Against “Marijuana”. Now its legal. This epidemic didn’t start with us pain ppl & it will not end with us. CDC & DEA & government are barking up the wrong tree. And The News .Don’t believe it!! Its all lies . Did they also mention 82,000 ppl in 2016 to 2018 committed suicide due to pain?? No of coarse not.

Jenifet

Thank you. You said it perfectly. I am lucky because i still get my medication from my primary but I worry if she ever leave or I end up in a nusing home or something and they give me nothing

Kris Aaron

Every word you said!! Thank you — it’s time politicians, drug “warriors” and the media began acknowledging the difference between prescription opiates and illegal, imported opioids shipped into the US from Asia and then used to increase heroin’s potency?
I have to wonder how much money the anti-opioid contingent — including representatives from Physicians for Responsible Opioid Prescribing — are making off denying opioids to pain patients. Our lives depend on our physicians’ willingness to prescribe the pain medication we desperately need to allow us even minimal functioning. The alternative to a lifetime of endless suffering is a choice between risking death with illegal drugs or suicide.
Is it my imagination, or did this “crackdown” begin around the time states began legalizing medical and recreational cannabis? Could it be connected to the Drug Enforcement Agency’s concern about becoming irrelevant and losing funding?

Mark

I agree with you and my situation has been much the same. I was on opioid medication from 1993 to present. But now the dose have been cut in half. In 1993 after starting these meds I had a life again. I could not work or drive but I was able to care for my home and myself 80% better than prior and the only side-effect was intermittent constipation which was easily dealt with. Now, on half the dose my pain has increased so much I cannot do half of what I did before the cuts. I can only work in my yard for an hour or so compared to 3 or 4’hours before. I have far less energy and the time I can do PT is down drastically.
All of this was for no reason. I have been treated at a pain clinic with strict accountability for the meds. Frequent pill counts and random urinalysis was required and no mistakes were tolerated. For the over 11’years I have been there I had no violations of any rules.
Pain medicine is about the only speciality where the patients are considered less than trustworthy and are treated as such. You are looked at with less Han veiled suspicion. And, it is the only specialty where a long term successful treatment is stopped and treatment is either stopped or drastically reduced for reasons that are rarely medical.

It doesnt matter. Ivw been fighring foe 2 years, 100% untreated. Ive been sent hime from er nore than once, no help. Today my 78 year old mother will experience what I have been. 8 loose screws, cant make it to MN cuz doctors incompetent and cant treat her bladder infection. And so she walks around with a bag for what seema to be firever now, no surgery and no pain meds. Welcome to wirhdrawl lady. You must be an addict. Tough [edit]. Yep. Been here done that. Nobody gives A [edit]. Ive missed 2 years of my life rhat I will never get back. Im searching for something on the strreet but ya know what…….

Lelena Peacock

Brava, Liza, BRAVA! *applauds*

Thank you so much for this beautifully written affirmation of REFUSING SHAME because you benefit from medications that society & our government are deliberately demonizing out of sheer greed & zealotry.

If there is anything essential that I can pass on to my fellow Pain Warriors, it’s the profound wisdom Liza is sharing in this article.

We MUST be unapologetic about needing & taking our pain medications. It’s time to start refusing the labels, gaslighting, and guilt trips heaped upon us all. We DESERVE quality of life, dignity, respect, compassionate care, and pain relief with safe, legal pain medicines!

Thank you so much Liza. I needed this reminder today. I’m off to subscribe to your blog! All my best to you and all our fellow pain warriors out there. *hugs*

dis may

There are more deaths in the United States from alcohol and tobacco products than there are for opioids. My field is the treatment of dual diagnoses. My masters is in social policy, my PhD in treatment research. I’ve kept abreast of the numbers of people dying from various substances of abuse for 20 years. Only very recently has opiate use contributed significantly to the numbers. Alcohol and tobacco products (yes, there is a reason to state ‘products’ after the word ‘tobacco’) are both legal. The numbers of Americans dying from alcohol and tobacco use are simply astronomical. How is it that these drugs are not mentioned along with all the hoopla over opioids? Both my parents died of alcohol misuse. My childhood was absolutely devastated by their addictions to alcohol. Victims such as myself are not counted among the death statistics – I did not die. But my life was absolutely ravaged from age two on. Until I left home at 18.
What kind of sense does this make? Why all the noise about opiate addiction, along with clear data that it is not pain medication as prescribed to pain patients that is causing the rise in death by opioid? This very important question is not asked for the most part. I’ve not heard one mention of the deaths due to alcohol, tobacco products and inactivity.
By speaking of annual deaths secondary to alcohol and tobacco products we begin to grasp the genuine issues. The USA is not a very good place to be a human being. MANY people are using psychoactive substances to death. Why? Now that is an important question. I say the media is designed to deflect, disguise and deceive. The suffering of pain patients is not important politically.

Kelley Eubanks

I agree with you. I’m a chronic pain patient also and since the Federal government decided for us how much medication we can and can’t take has caused me to go back to being unable to do very much. I’m in constant pain and it’s ridiculous. If just one of them who decided to make this decision for all of us who are compliant and have always been a compliant patient would just step in our bodies for five minutes I guarantee they would be in the floor in the fetal position crying for their mama’s. I have gone from living a good life at the dose I was on to now back down to the cap of what I can have which is more than half just one of them who decided to make this decision for all of us who are compliant and have always been compliant to be categorized. Don’t clump all of us into one category. Unfortunately all of my life I have had a very high tolerance to anything including antibiotics, Anesthesia anything. That’s just my body my metabolism. Everybody is an individual and everybody is different but putting a cap on what we can and cannot have is cruel and uncalled for. How many doctors do you know that prescribe heroin or ever have? None I am a retired nurse and yes there is a problem But don’t put us all in the same category. That’s what pain management doctors went to school for to specialize in this area and now you are degrading them also. Making them feel like they don’t know what they are doing. You might as well take the scalpel away from the surgeon it’s the same thing. I just hope that we are all together can get this law reversed and we can be pain controlled again and have our lives back. I feel terrible for those who are in so much pain that they killed themselves Because they’re in so much pain. It’s a travesty.

Barry

I just wanted to say thank you for putting that out there very well said I was dropped by my pain doctor a year and three quarters ago and I’ve had to resort to going to the street after being in pain management for 25 years I took eight Percocets from an emergency room after a car accident and my pain doctor drop me the ER doctor even called my pain management doctors office to explain why they were needed for the Breakthrough pain after the accident the world is just absolutely going crazy I don’t want to be going to the streets but I have no choice I’ve had multiple back surgeries I’ve had my left arm blown off with a shotgun hey my body is just a total wreck I need a knee replacement now and they’re telling me they will give me no pain meds after the knee replacement I’m just going to continue to walk on the broken knee because I’m not dealing with that thank you for trying and keep up the good work

Jacqueline DiLeo

They dont care .pharmacy cannot get the opioids even in New York city. It’s a disgrace but if these politicians needed them you bet your bottom dollar they would get them. They had me going every 28 days . I never failed urine test and took my pills like I take my other pills.
It’s not fair

Slobignat

I, and other chronic pain patients, will be protesting in front of the CDC Headquarters in Atlanta on June 21.
I too, have no life now, having been tapered to almost nothing despite having been successfully treated with Opioids for over 10 years.
I will represent ALL of us who suffer horribly, but cannot physically attend.

Kristina Huddleston, you are spot on regarding alternative/adjunct pain treatments. Losing our income through disability, unemployment, divorce or any other change resulting from chronic pain is devastating. Although l have SSD & Medicare for a severe back & neck injury, my LTD coverage enabled me to keep employer sponsored health insurance. Little did l know how unscrupulous the board would be in denying this coverage after 3 years, despite being newly diagnosed with breast cancer that required surgery & 1 year of strong chemo (which caused physical and cognitive impairment – additional impediments to my former career as an ICU RN). My husband of 16 years didn’t want to be saddled with a disabled wife, and we separated around the same time that l lost my secondary health insurance. Chronic chiropractic treatment & deep tissue massage isn’t covered by Medicare and l now pay enormous co-pays for pain medication. It’s extremely difficult to survive on disability income as it is. When non-pharma therapy costs are entirely out of pocket, how are we supposed to buy groceries & pay rent? The general (pain-free) public have loads of suggestions for hyperbaric chambers, traction, acupuncture, etc… as alternative options to opiods. But they probably don’t realize that insurance doesn’t cover most of them.

Thomas Wayne Kidd

I to am a opioid pain medication patient. Just recently I actually had my Methadone increased by an extra 5 mg which I appreciate. Now my pain Doctor is meddling into my Narcolepsy treatment which he knows little to nothing about. I have been taking Methadone for 35+ years and still he talks about taking me off this medicine. Over these years this has been tried twice without success. Instead of listening to me he continues this useless idea of taking me off these medications. Now he is talking about my Adderall and possible reduction of the daily dosage. In the past 3 years what they have done to me has caused me to lick my lips when I am nervous, and now he comes up with some kind of new syndrome that has caused this. My mistreatment has caused this but I am again ignored. Narcolepsy is a disorder of the central nervous system and along with the chronic pain it’s no wonder this has happened. In my research I have come to the conclusion that a concerted effort in population control is taking opioid pain medication has given me and millions more some semblance of a normal life but when we try to discuss this we are ignored. Insanity is covering the earth and the innocent will suffer. I am at peace with my Creator but unfortunately most people have rejected the Creator in favor of evolution which explains many things why we have become just another dollar and have become customers instead of patients. This is evil and wicked but when mankind has been reduced to just another animal what follows is chaos. The medical profession medicine makers and the pharmacy industry had been attached and sadly many of these have joined the government in this attack. Suicides and torture of cancer patients and chronic pain sufferers proves this in many ways. This can be nothing but insanity. But when a nation which was created in the high and lofty ideals of liberty and freedom allows the murder of 70 + million babies since 1973 what do we expect?

Cynthia o

Beautifully said! I keep saying…we need a couple of really big class action lawsuits against CDC, FDA, AMA, DEA. Once those get filed, the media might start to tell the full story.

Phil Griffith

Very Very well said Liza.

Jackie

Lisa thank you for writing this great article about pain & the unnecessary suffering patients are having to deal with 24/7. Its pitiful that our government has created such confusion on this topic. The words that is not mentioned enough illegal opioids crossing over our borders. As I read the other day we’re all one accident away from needing opioids to control pain! I have been in pain management for 25 years and worked 36 years until I could no longer continue. Now I am totally disabled due to lupus SLE, osteoporosis, osteoarthritis, Raynaud’s & fibromyalgia. While I was in Medicaid my doctors office stopped accepting this insurance as a result I was abruptly stopped my pain medications. This is a horrifying most inhuman to treat a human being! I spent weeks of pure hell in pain and withdrawals. I begged doctors to help me and not one would help me. As a result my pain spiraled out control bed ridden for 6 months screaming and crying my eyes out in horrific pain. This is how our country treats pain people?! After 6 months of torture my doctors office accepted Medicaid after one of ladies in the office had the heart and decency to help push through this particular office to accept WV Medicaid. After 4 years of trying to get on SSA disability I now have Medicare Thank God but now I’m worried that the government will stop paying for office visits to pain doctors and the prescriptions. God please help our country to have compassion and understanding for those of us that take our pain medication to be able to move our bodies to get one foot at a time out of bed and so on. Some days it’s such an effort to sit up so we keep pushing ourselves to be able to feel like a human and not one big sore.

ElizabethR

Thank you, Liza. We shouldn’t NEED to apologize. We didn’t ask for the medical conditions that have happened to us! What we need from healthcare policymakers is eminently reasonable. We are not criminals or “drug addicts”.

Peggy

How painfully true this article is. Extremely well written and should be used in all medical training.

Acora Whitehair

Thank you for speaking up your not only who feels the same way you do an going threw what your going threw

Debe

God bless you and thank you for standing up for yourself and the rest of us that only want to live our lives without pain everyday. I’ve lived for too long now being called a junkie by everyone that thinks they know what’s best for me, and if only I would try all the other wonderful options out there. Not only have I tried all the other options that didn’t work for me, but I cannot afford insurance, so this is what works for me and all that I can afford. But the stigma is wearing me down, and I don’t think I can go on much longer knowing how much I “disgust” these people. I hope y’all can be much stronger than I. I pray for everyone living this hell everyday.

To be honest there isn’t a day I don’t think of giving up. I’m just here for my pets and then I am grateful that they are old so I don’t have to wait around too much longer

Barbara Green

Thanks for letting me join in. My pain has rotated down my right leg to my toes. I wish i was off the pains meds and yes the pain is so bad at times. But nun it i just sit around. I have been on them for10 yrs. Im a 61 and i feel like im in my 30 most of the except for my pain.

Jeani

I’m so so tired of the pain…and normal people not having a clue. I frequently tell people imagine you had an abcessed tooth…and no one would pull it. As time goes by the pain increases and its 24/7….Still no one will pull it or cure it. It’s hard for people to comprehend never ending pain, so they tend to disbelieve…

AMY J KEARNS

A-FREAKIN-MEN!

Keri Champagne

Thank you for writing this! I am so done with people looking down their noses at me or anyone who takes opioids and takes them responsibly. I have osteoarthritis from my chin down every day I do everything I can. I go to the gym 2 times a week and cook as often as my body will let me. I am grateful for this !!! Thank you again

Lisa

Well said Lisa. I live in Virginia and I’ve been taking an immediate release and a long acting pain medication for 13 years now along with two other non-narcotic medications all by the same pain management doctor.

I’ve had 4 spinal surgeries, two fusions and two hardware removals, which has caused me more pain than prior to surgery and on top of that my surgeon failed to tell me that after having a fusion at L5-S1 that it’s very common for patients to start having pain issues with the sacroiliac joints, which is my battle now. In 2001 I was diagnosed with fibromyalgia, in 2018 was diagnosed with osteopenia and just two months ago was told it had now advanced to osteoporosis. Just two weeks ago was diagnosed with Rheumatoid arthritis .

9 months ago because of the CDC’s recommendations that pain patients should take no more than 90mme, my doctor reduced my mg (which had worked wonderfully for years) by half, then also reduced my quantity from 120 a month to 80 per month of the immediate release and took away 100mg of my long acting. Everytime time i saw him and explained that my pain levels went from a 2 to now a solid 6-7 he continued to tell me I was still way over the 90mme. I pulled out on my phone the conversion chart to prove to him I was well below the 90mme and I was actually at 74mme. He was surprised and even sti refused to increase my dose. That’s when I pulled up on my phone the latest article from the CDC admitting that the recommendations were NOT for pain management doctors but were in fact PCP doctors or dentists prescribing for acute pain and did not apply to patients that had already been taking high dose pain medications for long term use and in actual fact for patients already on long term high dose medications with successful results should not be lowered however the 90mme only applies to acute pain for short term use and for pain management long term treatment ours should.be 120mme.

Sadly though the damage had already been done.

Kaye

Thank you for sharing your thoughts and feelings, Liza! You took the words I have been saying to my family and friends right out of my mouth! I have Fibromyalgia and Psoriatic Arthritis along with several other ailments. You are not alone! Hang in there!

maxlet

“We’ve gone from a period back in the 90’s which (and no one argues this), people were being over-prescribed opioids”
Sorry, but I argue the hell out of that statement. My mother was dying of leukemia in 1997, when folks first started hearing about “hillbilly heroin.” She took almost a very, very long month to die, suffering obscene, unimaginable agony, because her doctor refused to give her ANYTHING for terminal bone pain, because some jackass recreational drug abusers were abusing pain meds. There was absolutely no question whatsoever that she was dying, but because of said jackasses she died in an unspeakable Hell which undoubtedly felt much, much longer than it was (God knows it seemed so for me).

This current opiophobic hysteria & rampant lies about meds is not new; it’s just affecting a lot more people. I’m still waiting for someone to tell me how forcing my mother to die in unrelieved agony helped a single recreational addict, or how forcing me to live in agony now is doing anything for the recreational addicts.

Sandra Thomas

Have had chronic pain for 30plus years. Been very blessed with most of Drs. It’s been a journey the worries about feeling like a addict. What people think about me. Though the years I have learned to take up for myself! My new Dr of 2 years has has a pain plan that really works. I have a pain pump best thing I ever did. Hope all of you find peace and the right doctor. Mine is a spine pain management doctor. He takes care of all my pain. If I have to have surgery he takes care of that also. Praying for all!

Jody Hoffman

We shouldn’t have to apologize for being a responsible user of a prescribed opiate medication. I have been using opiates since 2010, during that time I have never had a dirty drug test or early refill. I had always requested to have my medication tapered off slowly when I felt it was to much & then gradually increase them over the years. I fell victim to the madness and saw a great doctor retired because of this. I have been judged by everyone because I have to use the medication to live what is a normal life for me & they have no idea what is wrong with me. The only people who I owe an explanation to are my loved ones

Holly

Thank you Liza……excellent read! I am Un-apologetic too!

The one thing I can so very much relate to in your article is the awful guilt of not being able to be the person you once were. Happily taking care of my husband, children, house and yard. I was very proud! I also worked .

Now I keep getting cut back. The pain and depression are terrible.

Brian

I to take opioids. I have now experienced T H C capsules would advise you find out about it for yourselves . I found they help kill the pain for me

Cindy

About a month ago, my local paper printed an article about a man making a huge donation to some drug program in memory of his son who died from an OD. The article never mentioned the source or type of drug — stolen Rx; illegal street drugs, etc.

So I emailed the paper with these points and explaining the plight of pain patients, along with the new Task Force Report, and new CDC and FDA statements, etc.

The same paper just printed an article about a family’s suffering b/c their 2 teenage boys died from overdoses — using a stolen Rx.

I again emailed them, and invited them to contact me. If they came to my condo they’d see total mess and chaos and dirt, mostly due to my forced taper. But before the forced taper, opioids still left me with little function and some of the mess was already here; but not the dirt.
And I used to shower more than my now once a week if I”m lucky.

I cant’ do much — I’m barely showering weekly and have no quality of life since my forced taper — but I’m hoping these emails to this newspaper will help.

Maybe this is something that others can do from their beds or sofas.

Local media hopefully will be more responsive to subscribers. My local paper does a ton of personal interest stories.

Ali

I am a septagenerian, retired RN,CNN, and an Intracable Chronic Pain Patient.
Since I was five years old I have dealt with physician & medical staff being treated as a person with demoralizing character.
Pain is subjective and physician’s profile this into a mental addiction espically if your a female. Physician’s respond to us
Intracable Chronic Pain Patient’s
with an attitude we are mentally incompetent & our lack of control and exaggerating pain requires a mental adjustment with antidepressants. Pain is a mental addiction we need to control. Opoids make us even more addicted since we are mentally addicted to pain that we just can’t control. Intracable Chronic Pain Patient’s have no reason to require Opoids when OTC medications will suffice.
Physician’s hv profiled, ignored,
and charted our pain as mental incompetence for decades that we are labeled with street drug addicts.
Drug addicts are not synomonus with intracable chronic pain patients.
Physician’s don’t understand our physical pain because our pain is subjective. No studies on compliant intracable chronic pain patients, long term use, cocktail meds (used by cancer & HIV), and how compliant Opoids patients have a quality of life.
We have NO support for our disease, no ICD9 code to bill, no medical community services, we are labeled due to a stigma taught by government agencies that dehumanized us to the point the citizens see us as
Street drug addicts.
Our pain is Objective, debilitating, chronic, overwhelming, consuming, and totally ignored by
Physician’s.
Suicides, chronic pain patients loss of support, loss of physician’s, loss of quality of life, medication stripped and pt demoralized, and continue intracable pain to the point profound exhaustion are COLLATERAL DAMAGE of our government agencies. These loses can never be regained.
To protest is a physical endurance I am loosing. Where are our government advocates?
SILENT

Douglas Hill

I would hope, that at some very near time, someone would file a class action lawsuit against CDC and medical community. I believe they have intentionally denied legitimate chronic pain patients pursuit of happiness and inflicted extreme emotional stress. Very easy to look at some graphs and see that opioid prescriptions have plummeted whilst drug related overdoses continue to increase. Why has the CDC not issued an recall on their guidelines? This must mean that their intent and actions are intentional.

Judy

Thank you, very well said. I too must take pain killers/prescription opioids to be able to function enough to get through my days being a single mother of two teenagers (no husband-he couldn’t handle the chronic pain, said he couldn’t stay with me because he “wasn’t able to live life to the fullest”). And I have been taking this medicine for almost two decades, not because I want to but because it’s the only thing I’ve found in all that time that really helps. I’m not as well spoken as a lot of people that write articles here and I do appreciate the help you all give towards this fight. The fight that will allow the people like us, people just trying to get through life with chronic pain, to take the medicine we need in order to do so. Thank you!!

Georgette singbiel

I’m with you. I have Chronic pain. Sometimes the steroid shots work, sometimes not. I am considering a hip replacement.

I also take hydrocodone, 10 mg. As needed. I am very conservative when taking my meds. Yesterday I had a good day. Lasted over 7 hours without much pain. Today, not so good. I am in bed with my cat.

I loved what you wrote. You wrote my story. As a mountain of dishes lay in my sink,. I too am un-apologetic about taking opiods. By late afternoon I should be better. But please, don’t take away something that gives me some relief.

Wonderfully written. Your words echo as truth for me and thousands of other chronic pain patients. Thank you for your bravery and openness. America has a long history of knee jerk reactions when it comes to substances (prohibition movement and Harrison Narcotics Tax Act of 1914 to name just a few examples), with those patients who need the symptom relief the most as collateral damage in the “drug war.” Yes, drug companies and shady doctors ran amok with opiate prescribing, but the answer is not the elimination of these substances, but instead collaboration and a holistic treatment approach. For starters, why are we not holding the insurance companies responsible for creating a system where patients only alternative to pain relief is medication? These companies will never hear of paying for alternative approaches such as regular massages and acupuncture, and yet they continue to fly under the accountability radar. Doctors are so frightened of fines, investigations and lawsuits that they no longer consider what is in the best interest of their patients, instead their treatment approach has become what is most likely NOT to get them “flagged” by the government watchdogs. Don’t even get me started on the pain management racket that has popped up. Primary care doctors are no longer able to prescribe opiates, so the chronically ill are forced to meet at least monthly with “specialized” pain management doctors, who are making millions doing all these procedures and device implants. My pain doctor for example owns the day surgery center where he and his colleges do the shots, nerve burning and device implants. You can’t tell me that these “specialists” aren’t making a fortune forcing pain patients to undergo these procedures which have to be consistently repeated and don’t have high, long-term success rates. This is a complex issue and America is doing what we’ve always done, vilifying one focus in an attempt to cheaply skirt around addressing the real, underlying issues.

Laurie

We’ve had a VERY lucrative War on Drugs in this country ( is anything ever NOT a WAR in America?) since Prohibition in the 1920’s.
Then Reagan, and don’t forget Nancy, who popped pilled like candy, came out with the “Just say NO!” campaign.
Our government has put a powerful trigger in the citizenry’s psyche for drugs, but greed, pillage and wars are A-OK.
And that’s what they are doing with this once the DEA lost pot to terrorize us with.
And people not in pain can feel Oh-so-good about themselves…they don’t care nor are they interested. This includes most docs and the media.

Hey! it’s a $$$$ maker.
I have always been under-prescribed because few know anything about my condition; I have to educate my doctors and many just don’t have time to even listen.
Medical care has been privatized and we’re all on a conveyor belt: get ’em in, get
’em out.

I have to stream online for hours cause I can’t do much of anything anymore and I am getting old and tired and am totally alone…I don’t care what people say I am alone.
It’s getting untenable.
Vote people! or we will never have a chance to correct this path we’re on with the current Badminstration which LIKES to hurt people.
I am SO ashamed of my country now alone with everything else in my life ( if one can call it that)

Nancy Wilson

Thank you for writing this article. It says everything I want to say. I am so tired of apologizing for being disabled, from a car accident that wasn’t even my fault. I was sitting at a red light , when a speeding car slammed into the back of the truck behind me, which pushed me into the car in front of me. My whole life turned upside down because of a irresponsible driver! Don’t they realize illness or an accident, like the one I was in, can happen to anyone at anytime! The people waging war on opioid medication, or their loved ones may be the very next person to get sick, or become a victim of an accident, and then unfortunately, they will need opioid medication. Wake up people!

James Anderson

Hello Liza,
Similarly, I have taken an opioid Pain killer ( Vicodin ) for the last 4 years. I also developed a tolerance, needing stronger dosages. I became concerned about what it was doing to my brain when I viewed the following episode on CNN: “weed 4 pot vs. drugs” by Dr. sanjay gupta. You can view it on YouTube at : https://www.youtube.com/watch?v=v9pNxhe9jEg or type “weed 4 pot vs. drugs” into Google.
I also recently became concerned when I became aware that narcotic pain pills lowered people’s immune system. Since I am 73 years old and I know older people already have reduced immune systems, I decided to find alternative pain relievers that do not affect the immune system. There are 3:
1) Methadone
2) Butrans ( buprenorphine ). It is available as a patch.
3) BCD ( made from hemp, legal online in all states )

I plan on requesting my pain management Doctor to switch me over to those 2 alternatives. I already take BCD on my own, both orally, and a salve.

A side benefit of BCD is that it reduces inflammation, which can help with arthritis and Alzheimer’s disease.

You might look into it , especially since you have developed a tolerance. Good Luck