Being a Chronic Pain Patient in the Opioid Abuse Crisis

It has been all over the news and the US election – the opioid abuse epidemic. Like most issues, there are several components that complicate the matter beyond what many people want us to believe. These complications are actually negatively affecting the people who are using prescription opioids as prescribed, namely chronic pain patients, and doing so will generally not improve this crisis.

Before getting into things, here’s some background information:

  • Opioids “are substances that work on the nervous system in the body or specific receptors in the brain to reduce the intensity of pain” (x).
  • There are 4 different categories of opioids: natural opioid analgesics and semi-synthetic opioid analgesics (morphine, codeine, hydrocodone, etc.), methadone, synthetic opioid analgesics (like tramadol and fentanyl), and heroine. (x)
  • This includes medications that are regularly prescribed after surgery, medications that are prescribed for chronic pain patients, medications that are never prescribed, medications that are taken illegally, and more.

The Opioid Abuse Crisis + Chronic Pain Patients

What is going on in the opioid abuse crisis?

There are several problems that contribute to what has been dubbed the opioid epidemic. One – the number of opioid overdose deaths. The American Society of Addiction Medicine says, “Drug overdose is the leading cause of accidental death in the US, with 47,055 lethal drug overdoses in 2014” (x). Today, “at least half of all U.S. opioid overdose deaths involve a prescription opioid” (x).

Two – rate of abuse or dependence on opioids. As you may know, addiction is “a primary, chronic and relapsing brain disease characterized by an individual pathologically pursuing reward and/or relief by substance use and other behaviors” (x). On opiate addiction specifically, the ASAM also says, “Of the 21.5 million Americans 12 or older that had a substance use disorder in 2014, 1.9 million had a substance use disorder involving prescription pain relievers and 586,000 had a substance use disorder involving heroin” (x). To understand where this fits, in 2010, an estimated 23 million Americans over the age of 12 were addicted to alcohol or drugs (x– note that I did a LOT of digging and it was difficult to find this information, so if you know of more accurate information, please let me know!).

Three – the increase of these things. According to the CDC, “More people died from drug overdoses in 2014 than in any other year on record. Deaths from drug overdose are up among both men and women, all races, and adults of nearly all ages” (x). On the rate of overdose deaths, the CDC says, “Overdose deaths from opioids, including prescription opioids and heroin, have nearly quadrupled since 1999” (x). So while (according to the data previously discussed) opioid addiction might not be the largest substance people are addicted to, it is causing an incredibly large number of deaths.

Let me be extremely clear here: I agree that this is an issue. I do not deny that this is happening. I do not deny that it is possible for chronic pain patients to become addicts. I do not deny that we need to reduce the extent of it.

The Opioid Abuse Crisis + Chronic Pain Patients

Where do chronic pain patients fit in?

There is so much misunderstanding around those who are prescribed opioids because they need them and use them as prescribed and do not become addicted. I’ve talked about this a fair amount before, but most people who become addicted are never prescribed opioids in the first place. To quote my piece People Prescribed Opioids Are Not Automatically “Junkies,”

“A study in the American Journal of Psychiatry found that 78% of people addicted to opiates were not prescribed the drug for any medical reason. A study by the Partnership for Drug-Free Kids found that 9 in 10 chronic pain patients tried a non-opiate based treatment before relying on opiates. Oh, and my favorite statistic? 96 percent of chronic pain patients on opioids do not become addicted. That’s right. Ninety-six percent.”

A recent Twitter interaction I had resulted in learning that the statistic of 96% might be from a study that was flawed – I do not know enough about studies like this to argue for or against this – but in that case, the other studies that was offered said that a more accurate number is 88%. But even in that case, that’s 88%! Additionally, what a lot of people need to understand is that this is a very specific statistic; it’s not saying that chronic pain patients do not become addicted to them or that they do not become addicted to anything.

What is it like being a chronic pain patient in the current atmosphere?

I am constantly demonized. Sometimes it’s nurses or doctors in the ER and sometimes is the average person in line behind me at the pharmacy. Sometimes it’s the pharmacy interns and sometimes it’s a random person on Twitter. Anyone who actually knows me and my health history agrees that I am a great example of the type of person who does need a narcotic prescription, but the average person who looks at me and sees someone who looks healthy thinks that I’m a drug addict or someone trying to game the system. Unfortunately for me, I have a severe and highly active autoimmune disease that’s trying to destroy my body, so yeah, I actually need the medication.

I feel guilty for taking the pain medication that my doctors all agree I need. Before I take one of my pain pills, I ask myself, “Do I really need this right now? What if I waited another thirty minutes? Could I try and wait another couple of hours?” But if I don’t take it, then I suffer significantly and am unable to do pretty much anything. My rheumatologist once told me that I shouldn’t be able to physically get out of bed every day – and I still ask myself multiple times a day if I’m exaggerating my own pain to myself.

Many people believe that I am only taking opiates and that opiates are my only way for combatting pain. Surprise! Every chronic pain patient I know is on a cocktail of medications and uses many different ways to reduce their pain. I personally take 33 pills a day (an additional 2 with my pain medications), have physical and occupational therapy exercises that I do most days, use heat and ice, wear KT tape, have a TENS unit, and more. Narcotic pain medication is often one more tool in the toolbox for dealing with chronic pain; it isn’t the main treatment, which is something that the average layperson doesn’t know.

Chronic pain patients and the opioid abuse crisis Click To Tweet

Where can we go from here?

Where is the source of the increase in addiction? We can’t reduce the number of addicts until we know what is causing the addiction. As I’ve stated, prescriptions of opiates aren’t necessarily what is causing the frequency of addiction. If a smoker is at risk for lung cancer, you don’t focus on eating healthy to prevent it; you help them stop smoking. If chronic pain patients aren’t necessarily the ones becoming addicted, why would you focus on them?

Who is prescribing it to people who might not need it and who is prescribing it to people who do? If some doctors are prescribing it to people who don’t need it, that definitely needs to be cut down because even if they don’t become addicted, maybe someone in their household will because there is a bottle of pills in the bathroom cupboard. Additionally, we need to look at what kind of doctors are prescribing opiates. Are the lead prescribers in a certain specialty, and is that specialty one that you might expect patients to need opiates like oncology?

Regardless of the answers to these questions, the biggest point I can make is that we as a society have to stop demonizing addicts, regardless of what they are addicted to, so that they have the support they need to seek help. They deserve better, and addiction in the world will not decrease until they get better treatment from the average person.

Read more: People Prescribed Opioids Are Not Automatically “Junkies”

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  • Reply Sarah @ Back to Carolina

    Awesome post! I hate that your rheumatologist puts such pressure on you. I have a patch but use the break through pain pills sparingly because I know how quickly my body builds a tolerance.
    I was disgusted with the CDC guidelines. I am disappointed that doctors feel pressure to make us live in pain.
    How are we supposed to work or have full lives with friends, physical movement, and all of the other things that we are pressured to do, if the pain is constant and we are always waiting for the pain to get bad enough to justify medicine?
    Getting better is multifaceted and sometimes you need that bandaid of pain medicine for a year or two to get your ducks lined up, depending on the condition.
    And as long as you don’t abuse it, which doctors can EASILY check, there is no harm. The harm comes from taking it away from the deserving, who won’t get to live full lives or may have to turn to self medication, which is far more dangerous for the patient.

    November 22, 2016 at 5:07 pm
  • Reply Kate the (Almost) Great | Boston Lifestyle Blog - Best Posts of 2016 - Kate the (Almost) Great | Boston Lifestyle Blog

    […] Being a Chronic Pain Patient in the Opioid Crisis […]

    December 23, 2016 at 8:01 am
  • Reply Almost Kosher

    I don’t have a chronic pain condition, but my mother does. And I watch her struggle with pain because she’s convinced she shouldn’t take the medication she’s prescribed due to these stigmas. She sometimes can’t leave the house because of the pain. It’s so irresponsible for the media not to cover the full range of people who use these medications, including those who actually need them. Best wishes to you.

    January 30, 2017 at 2:37 pm
  • Reply Kate the (Almost) Great | Boston Lifestyle Blog - A Note on Living with Acute Chronic Pain - Kate the (Almost) Great | Boston Lifestyle Blog

    […] Preparing for Chronic Pain Medial Appointments + Printable To Help, How Chronic Pain Patients Use Opioids, Being a Chronic Pain Patient in the Opioid Abuse Crisis […]

    March 31, 2017 at 4:03 pm
  • Reply Pam

    Chronic pain pts also deserve better and from dealing with someone who is an addict, I watched him get COMPASSION ATE care for 7 months, he was treated like a little kid, all kinds of doors opened for help, when will addicts take responsibility for their actions and stop blaming their addiction to heroin or pills on a fictious dr?! I also know several people who are addicts and when I’ve asked why they abuse pills, the answer is because its fun!! They burn me up!! When their supplier is getting low, guess what, they go see a detox dr, score suboxone and start the cycle all ovr again…

    July 16, 2017 at 1:27 am
  • Reply Candi

    What these government and agencies are doing is faulting chronic pain disease patients and our physicians for the overdoses and deaths of addicts.
    With 100 million people who have a chronic pain disease, patients who become addicted to their medications is actually very low [.02-.6%]. We have legitimate prescription medications for diseases. The crisis is they are targeting patients and physicians. Physicians who still are trying to treat our chronic diseases. They are not allowing our physicians to treat us humanely, effectively and to the best of their ability. They are trying to doctor us all, without having a medical license. They are policing our physicians.
    They need divert their efforts, from legitimate patients, to focus on the illegal fentanyl and heroin manufacturers and distributors, also, methamphetamine, cocaine and all other illegal drugs.
    This distorted thinking and the false presumptions, that the cause of the “opioid epidemic”, is due to the overprescribing of much needed and beneficial medications, is causing havoc among physicians and patients. The hands of our physicians to treat us are being tied, due to the unfed imental and unfair laws they are trying to force upon them. We have our privacy invaded. There is no longer patient/doctor confidentiality.
    The reports are stating how the number of prescription opioid medications have dropped, fairly significantly. Overdose deaths are on the rise. Logical thinking and knowledge at this point would tell you, this system is not working. It is the use of ILLEGAL opioids that are fueling this “epidemic”. Nowhere in the studies, headlines, reports or bills, are there talk, discussions or input, of the effects these laws will have on chronic pain disease of our physicians.
    We pain disease patients are being abandoned, discriminated against and left to suffer with debilitating pain due to the stigma and laws being passed to condemn us and our physicians.
    This targeting is wrong, it’s discrimination against legitimate chronic pain disease patients, who use our MEDICATIONS responsibly.

    July 16, 2017 at 9:45 am
  • Reply Candi

    This war on “opioids” is actually a war on chronic incurable diseases. A war on chronic pain disease patients who benefit from opioid medications. Medications that enable millions of Americans relief of chronic debilitating pain associated with these diseases.
    The fiction, widespread hysteria and distorted truths about this “opioid epidemic”, is killing legitimate chronic pain disease patients who use their medications responsibly. We are patients.
    100 million Americans have one or more chronic incurable pain Diseases. As the CDC, DEA, FDA, Medicaid and Medicare, and numerous other government agencies, are blaming Doctors for the over prescribing of opioid medication. NOBODY, is looking at or reading the statistics from chronic pain disease patients. How about NOT addressing these drugs as dangerous and addictive. When all else fails: physical therapy, exercise, over the counter medications and numerous injections etc, we chronic pain disease patients, are left with one option to help us cope, opioid pain medication. Lets address this medication as lifesaving and medically necessary for the million of Americans with chronic diseases. Chronic pain is a disease. Chronic pain disease patients are now the epidemic. The addiction rate of chronic pain disease patients is .02-.6 %. We do not misuse or abuse our medications.
    No other disease medication is scrutinized. We, as patients, are being denied, dismissed, overlooked and discriminated against, by our physicians, due to all the scrutiny associated with treating chronic pain disease with opioid medications. Our Dr’s are afraid to treat us humanely and adequately. We have a disease that medication is readily accessible and beneficial to us and we are being denied. We, pain patients, are being discriminated against, due to people who abuse illegal heroin and illegal fentanyl. This is a direct hunt for Doctors who prescribe life saving medication, for pain disease patients, that benefit from them. We have our privacy invaded, we no longer are able to have doctor/patient confidentiality. We now have insurance agencies, pharmacists, and other government agencies in our physicians offices, monitoring, prosecuting and policing our physicians.
    Though the statistics show a reduction in, opioid medications distributed, due to the CDC guidelines, death rates of overdoses from illegal opioids is rising.
    The specific causes of deaths also needs to be closely investigated. The opioid in the person’s system needs to be specified. Was it an illegal opioid, was it opioid medication specifically for that person, was there other drugs or alcohol involved? These statistics need to come out. These Government agencies do not want that information out, due to the fact that this “opioid epidemic”, would then be debunked.
    Let’s put the shoe on the other foot. Restricting or taking away our medications is like FORCING people who do not want this medication to take it. One day those against these medications will need them but they will be denied.
    We have a chronic disease. We want to be able to take care of our homes, our children, our selves, as much as possible. Without access to these life saving medications, we are unable to do so. We want to live, not just exist in pain 24/7.
    We need the government agencies to look at the real statistics, not the hand picked. These agencies are not physicians. They are trying to doctor us, patients, without a medical license. They are also trying to police our physicians. This is a war on a disease, medications, physicians and patients.
    We, chronic pain disease patients, need help. All the headlines, topics and stories on how opioids are bad and how people are abusing, misusing, overdosing, becoming addicted or dying from them. We need to look at the good they do and how they help our disease of chronic pain and the million of Americans who use them for some relief.
    The government needs to put the focus on illegal drugs coming into, being manufactured and distributed in this country, illegal fentanyl, illegal heroin, methamphetamine, cocaine and all other ILLEGAL DRUGS. Not the legally prescribed and medically necessary medications we patients need. We chronic pain disease patients need help, but we are helpless due to the government and government agencies. There is stigma, scrutiny and discrimination against us due to a category of medications we desperately need and benefit from, opioid medications.

    July 16, 2017 at 9:47 am
  • Reply derk

    I will start by saying that it seems you know what you are talking about, and possess the knowledge required to evaluated this situation effectively. My problems is, that even you yourself have fallen victim, to the propaganda surrounding addiction. I understand its easy to do, I go through the same guilt when taking my medication, and don’t want to see addicts harmed any further by systems claiming to be helping them. But you have an article titled “What its like to be a chronic pain patient…”…and end it by saying that your most important point is that you feel ADDICTS should not be stigmatized. This is something that my experience has taught me is a MAJOR barrier in the search for effective treatment…and that is the fact that it has almost become politically incorrect to accurately speak on the topic of pain management. I as well have an autoimmune disease ravaging my body, and there is no question that these medications are required , but any honest person questions their motive in an atmosphere like the one that has been created. For chronic pain patients to gain the foothold they need to climb out of this hole (read: survive), they cannot initially be carrying someone else, as well. Anyone absentminded enough to believe, that a patient articulating their individual needs is doing so with the intent of damning another group, is not going to be paying close enough to either of them to be helpful anyway. The science supports the CPP its our nations tendency to ignore fact for fantastical story telling that must be taught.

    July 21, 2017 at 1:36 am
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