In the debate over opioid addition, there’s one group we aren’t hearing from: chronic pain patients, many of whom need to use the drugs on a long-term basis

War on prescription drugs: what if you depend on opioids to live a decent life?

https://www.theguardian.com/us-news/2016/jul/12/prescription-drugs-what-if-you-depend-on-opioids-chronic-pain

The US is facing what many are describing as an opioid crisis, with growing numbers of deaths associated both with opioid medications and overdoses on heroin – 19,000 in 2014 linked to opioids alone. But in the swirl of debate over the subject, there’s one group of Americans we aren’t hearing from: chronic pain patients, many of whom need to use opioids on a long-term basis to control their pain effectively.

Unlike patients with acute, short-term pain or pain associated with terminal illnesses such as cancer, they’re looking at a lifetime of living with conditions such as Ehlers-Danlos syndrome, fibromyalgia and endometriosis, along with many other disorders associated with chronic pain. Others are dealing with persistent pain from injuries.

Many have conflicted relationships with the medications they need to enjoy a good quality of life, and they fight an tough battle against negative public perception and cultural attitudes. They’re struggling with issues that aren’t being accounted for in conversations about dependence, addiction and the safe use of opioids for long-term pain management.

Heather Ace Ratcliff, who has Type 3 Ehlers-Danlos, a connective tissue disorder characterized by hypermobility which allows her joints to dislocate and subluxate easily, says uninformed views can stigmatize chronic pain patients who are struggling to access relief. “I am regularly treated as if I am overreacting, a hypochondriac, or a drug addict for wanting an increase in pain management,” she says, illustrating the consequences of misinformation about opioids and pain.

But those attitudes are internalized as well. Even though many patients recognize that opioids help them manage pain effectively, some still fear them, worrying that their relationship with their medication may be sliding into addiction. At the same time, they’re dealing with side effects like fatigue, “brain fog” and gastrointestinal stress. In an environment where physicians who aren’t extensively familiar with pain management and opioids can leap to conclusions, it can be difficult for patients to have honest conversations with their doctors about their concerns, as they may fear being chastised or cut off.

Shayla Maas, another patient with Type 3 Ehlers-Danlos who also has an autoimmune disorder, says that the conversation surrounding opioids sometimes makes her paranoid about her medications. “Maybe I’m just blowing it out of proportion,” she says, “looking for attention, looking for meds.” She can hardly be blamed for her self-doubt, as that’s precisely the kind of messaging she receives as a chronic pain patient, and it’s easy to internalise the fear, she says, that you might become a “dope fiend”.

Anna H, a patient with fibromyalgia, shares these worries. “I’ve been taking relatively small doses of pain meds every day for about six years, but I’m still afraid that taking a certain amount of pills – even if I’m in a lot of pain – will send me down the path of addiction.”

Their fears are to some extent grounded in reality: opioid medications can have an addicting effect. But the real story is more complicated.

“Opioids are the cornerstone of the treatment of pain,” explains doctor Anita Gupta, a board-certified anesthesiologist, pain specialist, pharmacist and vice-chair of Drexel College of Medicine’s division of pain medicine in Philadelphia. Among her many roles, she also serves as vice-chair of the American Society of Anesthesiologist’s ad hoc committee on prescription opioid abuse and has a vested interest in addressing the misuse of opioids. But she also has concerns about inadequate information that harms both patients and providers.

Gupta makes an important distinction between dependence and addiction, cutting to the heart of one of the greatest misunderstandings in the conversation about pain management. “If you’re on opioid medication for a long period of time, you become dependent,” she explains. “When a need becomes a want, that is really an example of when someone can become addicted. When you want it and you can’t live without it, can’t survive without it, it interrupts your day to day life, that’s addiction.”

Though organizations like the American Academy of Chronic Pain Management, US Pain Foundation and the American Chronic Pain Association engage in patient advocacy work, it can be a struggle. Even with the weight of patients, family, and medical providers behind these groups, they aren’t always treated as stakeholders in processes like developing new guidelines for opioid prescription and use.

“There’s a saying that goes something like: ‘We are all one drink or pill away from addiction,’ and I know this is meant to destigmatize what addicts go through, but I feel like I’ve been seeing variations on this ‘common knowledge’ more and more lately being used (on social media) as a cudgel to remind patients to not overdo it,” Anna says, speaking to the dual-edged sword of awareness. A motto designed to humanize the experience of addiction has been turned into a weapon that targets people who rely on opioids for pain management, and that translates to real-world stigma.

“When other people find out that I’m on opioids,” Maas explains, “depending on how close they are and how well they know me, I might get an ‘it sucks that your pain is so bad’ to a slightly narrowed side eye.” The judgmental comments she receives make her feel like people think she’s taking opioids for the fun of it.

“Believe me,” she says, “this is not for fun.”

“I haven’t really experienced the stigma personally other than some ill-informed comments from acquaintances,” says Anna. “But the media coverage of the ‘opiate epidemic’ as driven by pill pushing-doctors and by pain patients worries me a lot, and I think it is already being used to forward the idea that people in chronic pain should not have access to relief from their pain.”

Both Maas and Anna articulate worries that chronic pain patients are being “thrown under the bus”. Doctor Jerrold Winter, professor of pharmacology and toxicology at the University at Buffalo, tends to agree, and is concerned that new CDC guidelines and other efforts to address opioid use could actually make the situation worse.

“I think [the CDC guidelines] go much too far and a) will leave many in pain and b) will drive some seeking pain relief into the illicit market with all its hazards,” he says. “Indeed, two NIDA officials recently pointed out that the rate of deaths from prescription opiates between 2011 and 2013 were stable while heroin-related death rates rose dramatically. I fear that this trend will only worsen under the CDC guidelines.”

The ability to be open about these symptoms along with concerns about degree of dependence on opioid medication will help patients make sound decisions about their care.

That requires both clinician and patient education, as well as listening to the fears of chronic pain patients like Maas and Ratcliff as they attempt to balance chronic pain, fears about forming addictive habits and frustration with public perception. Both doctors and patients need to be playing a more prominent role in the unfolding conversation about how to deal with a very real American public health crisis.


11 Responses

  1. Steve,,
    I am a CPP patient for the last 11 years, and won’t.waste anyone’s time going into the severity or lack of a decent life without meds. However, I DO believe I can partially answer your question as to why we aren’t hearing from Chronic Pain Patients who need these drugs to have any quality of life whatsoever.
    We are stigmatized and terrified. Starting in 2011, most of us were forced into the”Pharmacy Crawl” and got to experience first hand the powerlessness and humiliation of begging a pharmacist to fill these life saving medications. We were judged and treated like criminals and drug addicts because of an illness or injury we sustained through absolutely no fault of our own. So many of us were deeply traumatized by this refusal to fill our medications that we are now terrified these meds will be taken away again, and we will be forced back into our beds, if we are one of the lucky ones who have found a compassionate Dr and pharmacist…The embarrassment and humiliation we were forced to suffer in addition to chronic pain has left along lasting .damage to our psyches and even caused PTSD for some (like myself) that it is nearly impossible for us to speak up, I’m aware we must change this, but how. I compare how I feel to being a rape victim (by the medical profession) and I’m afraid if I speak up, it will only get worse for me( as illogical as that seems)…I have been a registered voter and feel the only way to have my voice heard is to study these midterms and do my best to vote the non CPP advocates out. In the meantime, I live with the terror that has been forced upon me by being refused over and over medications with a legitimate prescription by my caring Dr. This has done so much damage to my self esteem that I remain mute.Ai strongly believe I am not the only one. May God have mercy on us all.
    capt.

  2. All the vets that are coming out of the recent wars are expensive to take care of. All the elderly and infirm are costly to care for, even more so now that our government CUT Medicare and Medicaid. We are seen as disposable due to the fact that we aren’t perfectly healthy. However, instead of treat us with inexpensive opioids, they withhold them, or force patients into risky and expensive procedures so they can make $$.

    There is another administration that started like this, separating and stigmatizing the weak and ill from the general population. I hope I don’t have to remind everyone who that was, or how it turned out.

  3. Great letter.
    Thank you

  4. The number one goal in my opinion I’d to kill off the infirm because we cost too much of care for. Before the last several pushes put forward by the CDC, FDA etc people in pain went to their physician once or twice a year. weren’t required to go to “specialists, didn’t have to go through degrading piss tests and pill counts, and paid a mostly reasonable price for medication that has been proven over hundreds of years to be relative safe and effective. The costs both financially and emotionally were relatively minimal. Enter the agencies who have been losing the “war on drugs” and losing it in a big way and the medical providers who see a cash cow just ripe for the picking. Now those of us in legitimate pain have to jump through expensive hoops and along with the general public being brainwashed to believe that we and our doctors are deeply involved in the mounting problem of addicts who by choice abuse drugs of any kind to get high. Now the costs in every area of our pain filled lives are more than most can afford both financially and emotionally. Access to medication is becoming increasingly difficult , the government agencies have better job security and our lives are both unbearable and expensive. We can and should fight against this stupidity even though we are trying to empty the ocean with a teaspoon! As long as we fall into the trap of feeling all the hoops we go through are “for our own safety” the chance of getting a cup instead of a spoon to empty that ocean is nil.

  5. This is exactly right, the voices of chronic pain are either being ignored or stifled. No one outside of the chronic pain community wants to hear about the damage the government is doing to people in pain.
    Lawmakers seem only to be concerned about groups/lobbyists who are handing money hand over fist in the form of campaign contributions.
    Government regulatory agencies (CDC) are only concerned with creating opposition and blocking the access of opiates to people suffering from addiction while in the process blocking medical access to these drugs to the people who need them.
    Personal beliefs by these bureaucrats out weigh actual medical science and they have absolutely no remorse about what they are doing to people who suffer from chronic pain.
    Then there are the Government Watchdog/policing agencies, (DEA) who has absolutely no concern about causing damage and harm to people who truly need opiates to manage their pain. Their only goal is to justify their own existence and creating a new cash cow out of legally prescribed medications to replace Marijuana as thier number funding device.
    What about the FDA who drags their feet on approving new drugs to treat chronic pain for patient trails?
    So, who’s driving this one sided war against people in pain?
    Who would gain from opiates being banned or seriously regulated and then new drugs suddenly introduced into the Pharmacutical Markets?
    Who already has the money on hand or can create serious earnings simply by raising the prices of existing products already on the market in order to buy government officials with huge campaign contributions to get their way?
    All these questions are rhetorical because we all know that it’s Big Pharma. This is all no different than the government corruption exposed during the tobacco hearings in the 90’s. Politicians and government agencies payed off by being offered high paying positions in Tobbaco companies. But after 60 minutes exposed it, big Tobbaco was hit with the biggest lawsuit ever recorded. This is where we need investigations. As with every case of corruption, follow the money to get to the truth.
    Then we have the addiction recovery industry who has also been shoveling cash into campaign funds of decision makers. What do they have to gain? Funding!

  6. In Reference to Media Comparing us Chronically Pain Sufferers to Heroin Addicts! This is my story and please read it and unless my theory is true and it overwhelmingly appears to be.

    I have taken this opportunity to share my heartbreaking story in hopes these witch hunting Opiate ill informed skeptics will read and understand that I would have no life without Medically prescribed Opiates by a physicians care and strictly monitored monthly urine and blood test. Please remember that An Opinion Before A Thorough Investigation Is The Epitome Of Ignorance! And that a little more compassion from the Medical Field and its representatives could have saved my beautiful Stepdaughters life. Let me say this! A person who has a addictive personality will abuse anything that helps them feel better. I have taken Oxycontin for 12 years , I have had 20 major surgery’s in 9 years. I have so much physical pain I can not even get out of bed with out pain meds and when I run out I run out and just lay in bed praying the Lord relieve me of this horrible condition and I pray God you pain med skeptics never go through what I go through everyday of my life when the only thing you have to do is threaten what help I get, Shame on those that are attempting to do away with us Chronic Pain Sufferers! There will always be drug abuse and as the so called war on drugs has failed all this will! All you do is stoke and aid the drug pushers business to knew heights in the Black Market of Heroin while depriving folks as me to this horrible movement! My Stepdaughter committed suicide 4 years ago because of being treated like a drug addict by her family and doctors when all along she suffered from Lupus and Fibro which I believe was brought on by a deadly car crash at 18 , she told me between that which I was being put through and what they were putting her through she was not going to live her life in such a hell brought on by people like you that are on a witch hunt to out law Opiates and pain meds that give us some sort of a life . As a retired Police officer and worked indirectly close to the DEA, you people do not have a clue how thrilled you are making the illegal opiate trade and think of my Late Stepdaughter as you continue on with this 2016 Version of the ( 1940s Propaganda Film named REEFER MADNESS )movement to outlaw opiates! Just like the slaughter of children at Sandy Hook if there would have just been gun laws , my God they were Gun Laws , the guns that murdered all those 20 children were all registered and owned by a school teacher! You fight Drug Addiction in Elementary education by teaching all children the dangers of Booze and Tobacco which if these witch hunters want for us to know the real truth but they do not. I miss my Stepdaughter a so much and some of us will continue on the fight to protect our right to feel better and function without fear of these witch hunters trying to convince us to commit suicide . And they are trying to do exactly THAT!
    The under line real truth is THESE witch hunters would rather us Chronic Pain sufferers commit suicide are and DRINK all the BOOZE we can drink! The Federals legalized it ( ALCOHOL) knowing its a more deadly drug than Strychnine. And just because the DEA has miserably failed with their witch hunt type movement on drugs why do they deprive us sick people of our Constitutional Rights to be Happy in that pursuit of with Professional Physicians to take meds that give us relief of this horrible malady of Chronic Pain ! May God have mercy on their miserable souls they that seek to destroy us Chronic Pain Sufferers only and little hope of temporary relief of this horrible sickness.

    Sincerely,
    Wayne S. Swanson II

  7. I am one of those chronic pain patients who has Central Pain Syndrome, a condition from having a stroke. I have a pain management plan that includes mild opioids which gives me a better quality of life with my 25/7 relentless body pain.
    It’s so hard for us chronic pain patients to have the conversations with doctors when Gupta, Kolodny and others are constantly spewing forth inaccurate information regarding stats and inaccurate information that clumps together the innocent pain patients with the illegal recreational drug users.
    As the VP of CPSFoundation helping patients with this condition and caretaker of my husband; I find it frustrating to constantly see the appointed doctors spreading flawed information which in turn stirs the fire of a so-called epidemic. We need to ask ourselves why they continue to do so. Is it because thise doctors will be making money on Addiction Centers?
    We do know there are doctors that sit on the panels such as PROP and are in direct violation due to conflict of interest. Journalists and the like should be delving in to figure out the bottom line.

    Lisa Davis Budzinski
    VP of Central Pain Syndrome Foundation
    and a Chronic Pain Sufferer

    • So very true!

    • Lisa, this is Suzanne Stewart, You said it so correctly! Perfect and thank you! So right!!

      (Ambassador for U.S. Pain Foundation, Founder/Admin @RASEforCRPS & @Ppl_InPainUnite, mentor For CRPS patients, author/writer @ Ntl. Pain Report, Blogger “Tears of Truth” (suzydukettes.Wordpress.com)

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