National Pain Day

By Angelika Byczkowski

I resent that we pain patients are essentially being called liars by the anti-opioid brigade, as they refuse to believe our pain is as extreme and debilitating as we claim.  Some of the non-opiate medications they propose instead have more dangerous side effects than opiates, even while being much less effective.  Research has shown that chronic pain itself causes brain damage and hormonal disruptions, but this factor is conveniently ignored.

Whatever the initial cause, pain can take on a life of its own in our nervous systems and persist even after its source has healed (as in Complex Regional Pain Syndrome).  Pain becomes a “primary symptom” in itself, requiring the same aggressive treatment as any other debilitating illness.  The longer pain is allowed to last, the more deeply its paths are worn into our nervous systems and the more likely it is to persist.

Opiates have been used for thousands of years and have proven to be safe, even for long term, use when taken as directed.  They are more effective and have fewer side effects than any other medication currently used for pain – including Tylenol.  There is no evidence that opiate pain management “causes” addiction either, as it’s statistically unlikely for people to get addicted to opiates they are taking for real pain as directed by their doctor.

Addiction is a separate illness and unrelated to chronic pain.  Addiction is not drug-specific and addicts will use whichever drug is available, usually abusing other drugs or alcohol as well.  Most overdoses involve multiple drugs, especially alcohol, which is deadly when combined with opiates.  When their drug of choice is no longer available or too expensive, they don’t just stop.  They are addicts, so they move on to another drug – heroin, in the case of opiate addicts.

Until people *with* chronic pain are involved in policies calling for an end to opioid use, the restrictions are coming from people who are clearly *not* experts in chronic pain.  Since pain cannot be visualized or quantified in any objective manner, people without pain cannot possibly understand what we’re dealing with.

The biggest problem is when our pain is invisible.  If the public could really see us, they would learn that we are more like them than like addicts.  The public perception of pain patients is ridiculously negative, fueled by the relentless propaganda of the failed “War on Drugs”.  Because we have to conceal our use of opiates from the public, we are hiding the benefits of opiate use – a truth the public should know before they consider denying us these medications.

How about a National Pain Day, where we all “come out” to our family, friends, co-workers (that’s where the real risk lies) and the general public?  If people could see, meet, and get to know all the opioid users with chronic pain in their midst, they would sympathize more.  It worked for gay people, perhaps it could work for us as well.

Until she was disabled by the progressive pain and fatigue from Ehlers-Danlos Syndrome, Angelika Byczkowski was a high-tech IT maven at Apple and Yahoo.  She lives in a rustic cabin in the Santa Cruz Mountains with her husband and two dogs.

Dr. Miller has his doctorate in clinical psychology and is an Assistant Professor in the Department of Family Medicine at the University of Colorado Denver School of Medicine where he is the Director of the Office of Integrated Healthcare Research and Policy. His core task is to integrate mental health across all three of the department’s core mission areas: clinical, education, and research. Opinions expressed here are his own and not those of his employer.

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  • Yankee

    Well it’s about time. It also needs to be recognizes that even though these meds work for some they don’t for those who have allergic reaction.
    Drs. Have very little sympathy for anyone who is in limbo while others can take opiates, it still a Bee in their bonnets.

  • AmberGretchen

    Well said. I would add that the economic burden of un-treated and under-treated pain is almost unimaginably massive, which should be a compelling argument to consider when economies around the world are struggling as they are now. To give a very personal example, without proper pain medication, I would probably be forced to go on disability for the long term and not contribute productively to society. What a waste that would be of 10+ years of education from top schools, including a PhD in Immunology. With proper pain medication, I can work, pay taxes, have productive and rewarding relationships with my loved ones, and in general be a productive member of society. Why on earth would anyone argue against that?

  • http://twitter.com/_Ashbet_ Andi S

    I suffer from Ehlers-Danlos Syndrome as well, along with trigeminal neuralgia (debilitating pain from a damaged nerve in my face) and intractable, near-daily migraines caused by the damaged nerve.

    I am a parent, a partner, and as productive a member of society as my health issues allow me to be. I finally had to quit working and go on disability when my pain and, more importantly, my day-to-day reliability became too much, and my employers were not willing to let me work from home.

    I avoided opioids for many years because I feared addiction and stigmatization by doctors, but since the only other option for treating the trigeminal neuralgia was brain surgery that had only a 40% chance of success in my case, plus the probability of severe side effects, I finally began taking butorphanol, a non-euphoric opiate agonist. (They had tried me on hydrocodone/etc., but butorphanol seems to be more effective for me.)

    Without butorphanol, my only remaining option would be brain surgery. While it is a drug that is considered “addictive,” a responsible patient taking it for pain is not going to get addicted (in fact, I’ve made 2 months’ worth last for 4 months, because I take it sparingly.)

    However, there are other people whose pain *is* well-controlled by other opiate medications, and denying them that necessary tool in order to keep addicts and criminals from gaining access to pain medications makes no sense — people who are willing to break the law are ALWAYS going to have the opportunity to get what they want, whereas genuinely sick people are suffering because of the DEA “crackdown” on opiate prescriptions, and doctors’ reluctance to prescribe opiates because it might bring them under DEA scrutiny or an audit.

    When I hear about people with chronic illnesses being “dumped” by their doctors because the doctors don’t want to deal with the paperwork associated with opiates, I know that the War on Drugs has gone too far.

    If my doctors were unwilling to prescribe me appropriate medications, I would have to drive 40 minutes each way to the only semi-local “pain management” doctor who does prescribe opiates. They require patients to sign a contract saying that only they can prescribe any type of pain meds (not a great idea when I have multiple structural issues caused by EDS, such as serious spine degeneration), and they also require patients to come in every single month, in person, to pick up their prescriptions. Since I often can’t drive, that’s a problem for me — and even more of a problem for someone in chronic pain who is trying to hold onto their job.

    And I’m *lucky* — I live near a major metropolitan area. I know people with my condition whose pain management doctor is 3+ hours away . . . but they still have to go in monthly, because their primary-care doctor won’t or can’t prescribe pain medication.

    A system of laws that disproportionately punishes pain patients is not the answer. Given that we have a lousy addiction-treatment system, maybe focus on THAT, rather than DEA crackdowns on doctors who see patients in legitimate pain.

    So, yes — I am standing up and raising my hand and saying that I use and have used opiates for years, yet I have never struggled with addiction. I have never used ‘street’ drugs by personal choice, and I have never abused alcohol. But I am still told, even with my history of responsible opiate use, that I will wind up getting shunted into the ‘pain management’ system if the person who currently prescribes for me retires.

    This system means that many patients go without adequate pain relief, which has a huge impact on the economy. Many people who would have been able to work if their pain had been treated are now on disability. And many people who can’t afford the monthly doctor visits and travel costs to see ‘pain management’ get no pain relief at all, which is a sad commentary on just how well this “system” is working for us :/

    • http://twitter.com/_Ashbet_ Andi S

      Oh — I have to post an update, because I just found out yesterday that the last-option brain surgery will not be an option for me, because my specific nerve configuration will not allow open-surgery access to the area.

      So, for me, it’s opioids or . . . nothing, since they haven’t come up with an alternative treatment, and I’ve failed out of treatments with more drugs than I can count at this point (and I’ve suffered some cognitive damage in the meanwhile — chronic pain can really mess with your attention and ability to focus, and that’s WITHOUT any pain meds and their effects), because I’ve been willing to try everything from anticonvulsants to NSAIDs to antidepressants to migraine preventatives to beta blockers, and NONE of them worked.

      The only things that I’ve found to be effective for my trigeminal neuralgia pain is butorphanol or straight morphine in the ER, which they gave me after I’d been there for eight hours in agony, with neither IV Toradol nor IV Percocet doing anything (I’d had a screaming migraine for 3 days and was vomiting and unable to function, which is why I finally had a friend drive me to the ER and had my daughter come with me to do the necessary talking and filling out of forms, because I was blind with pain and couldn’t stand light — I’m sure I was an interesting sight, getting rolled in through the doors in my wheelchair with a sleep mask covering my eyes.)

      I don’t *want* to have to take these drugs (and I’d have to go to Pain Management to get morphine syrup, and my doctors and I have agreed that it’s inadvisable to divert all of my pain care to a doctor who is unfamiliar with my genetic disorder and is not involved in my day-to-day care, especially with the access issues of her location and my frequent inability to drive), but they’re my only chance at being able to live my life, be an active mother to my child and a loving partner to my boyfriend, and to have even a semblance of a life for myself.

      As someone recently said on our EDS support board, paraphrased because I don’t have a link handy — addicts and drug abusers use opiates to try to escape reality. We use it because we’d like to be able to *endure* reality and get our pain under control enough that we can *live* our lives as active participants, rather than bystanders.

  • Andrea B.

    Thank you for sharing your story. I am struggling to find the right balance in how I manage pain – and opiates are absolutely part of the mix. I wonder if people realize how pain patients WORK to keep their pain under control in order to function. Opiates are part of the mix, but so is heat, ice, TENS unit, gentle yoga, breathing and meditation, bracing, epsom salt baths, physical therapy, topical creams, etc etc etc.

    Opiates are important for many of us. But even more important: we need more compassionate pain doctors. I believe that opiates, like all medications, have some benefits and some drawbacks. What I really need is a compassionate doctor who recognizes I am doing the best I can, and my desire is to be as functional as possible.

    Thank you for being willing to talk about this.

  • Team Fred

    September is Pain Awareness Month. Perhaps Pain Awareness Month 2013 should include a coming out day. This is such a complex issue that is being bandied about in political and media arenas with almost no representation from actual people with pain. Perhaps it is a fear of persecution or being targeted in some manner that keeps people with pain silent.

    The anti-opiate folks seem to be so focused on the singularity of their mission that they aren’t acknowledging that a significant contributing factor to abuse, addiction and diversion is that prescription meds are usually the ONLY pain relief option that people are offered through our country’s healthcare system.

    Healthcare providers are loathe to recommend anything that is limited or isn’t covered by insurance; i.e., massage, acupuncture, physical therapy, dietician, meditation, custom bracing, compounded topical preparations, yoga, etc.

    Even if opiates were removed from the treatment options list completely, the issues of abuse, addiction and overdose would not disappear. The same people engaged in these behaviors would simply choose a different substance.

    The anti-opiate folks should take a step back and evaluate the root of those illegal behaviors they are trying to eradicate sooner rather than later. When they least expect it they WILL become a person with pain looking for relief and faced with few options.

    • Andrea B.

      “The anti-opiate folks seem to be so focused on the singularity of their
      mission that they aren’t acknowledging that a significant contributing
      factor to abuse, addiction and diversion is that prescription meds are
      usually the ONLY pain relief option that people are offered through our
      country’s healthcare system.”

      AGREED. In my journey, getting a scrip for opiates happened quickly. But things like the pain management consult (to talk about options besides opiates) is taking months. Getting a compounding cream took months. Getting custom bracing: will probably have been a six month process by the time I’m done. And then there’s all the things I’ve had to seek out for myself – the gentle yoga (called Svaroopa), the dry needling, etc. My doctors didn’t find or suggest those things to me, I had to find them on my own (and they’ve been the biggest part of my pain relief).

      Also those opiates, often generic, are cheap. My insurance had no problem paying for them but has been FAR more resistant when it comes to paying for things that would likely help more and have less downside.

      • http://twitter.com/_Ashbet_ Andi S

        And that’s a real problem — throwing cheap generic opiates at a patient who has other needs, or for whom opiates aren’t working, is an issue with insurance companies.

        I can get hydrocodone for my back covered without a problem, but getting Flector patches — a topical NSAID that has decent penetration for skeletal pain — was a four-month process of my doctor arguing and escalating with different levels of insurance company reps, because oral NSAIDs give me stomach irritation and severe peripheral edema, but the topical patch works locally and doesn’t give me systemic effects.

        While this article is specifically addressing the problems that patients and physicians run into when dealing with the “War on Drugs”, which winds up putting a lot more obstacles in the path of genuine pain patients than it does to criminals and addicts (who tend to get what they are seeking no matter what, because they may be desperate or determined . . . but sick people often have less strength to fight and to jump through hoops like picking up prescriptions monthly in-person), it’s also good to point out that opiates are not a one-size-fits-all solution, and insurance companies do need to cover other treatment modalities if that is what is appropriate for the specific patient in question.

    • LoriDA

      I agree wholeheartedly about medication being the only choice that most insurance companies cover for people in pain. While I tried many alternatives to medication at my expense the medications and PT if done properly offer me the best relief. Of course I am limited to the amount of PT I can have in a calendar year. Like why? Am I going to abuse that?

  • LoriDA

    Like the above writer I also suffer from Ehlers-Danlos (EDS) syndrome. After years of increasing and unrelenting pain and injuries I was properly diagnosed only after a severe post operative bleed. My pain had decades to create it’s pathways in my body’s nervous system. By nature I am not a whiner. I gave birth to a full-term infant with no medication. After my surgeries I did not request refills of pain medications. Only when my pain became widespread and unrelenting to the point that I could not “think” or “meditate” it away did I start asking for pain control. My last surgery, an open abdominal surgery, resulted in the loss of 50% of my blood. However, not knowing I had EDS or the bleeding disorder I requested to walk within an hour of returning to my room. That surgical complication made me more earnest in my search for a proper diagnosis. When I was diagnosed with the EDS my doctors at the time felt that my pain should be treated to help me maintain as much functionality as possible. My pain management did not start with opiates but that is what was found to be the most effective for me. Opiates were the most effective, least impairing and most affordable pain treatment option for me. I have been managed on narcotics for about a decade now. Last summer my state implemented more strict laws regarding opiate prescribing and monitoring. My then GP did not do the right test for my medication and the result came back negative for my medication. He told me I was “diverting” and abruptly stopped my narcotics. When I inconveniently went into acute withdraw he sent me to a psych hospital where my severe pain was ignored and I was treated like a drug addict. The emotional, physical, social and financial scars of that episode are still with me today. I do not trust doctors. That drug withdraw left me using a walker and a scooter to grocery shop. Now I am back in physical therapy to learn to walk properly again and to reduce the back pain. When I wanted to tell my story to educate others and to hopefully prevent the same from happening to another I was warned that to do so would make me a target of drug abusers so I let the fear stop me. I now have a certified pain doctor and a team of providers who are knowledgeable about Ehlers-Danlos. The “moral panic” surrounding the use of opiates for pain appalls me. Opiates have been used for centuries and are safer than many other and most, maybe all newer pain medications. Because many opiates are generic the profit margin for the drug companies just is not there. As long as these companies back the demonetization of narcotics and have the ear of the doctors and the public via anti-opiate lobbyist groups this issue will continue to cause fear and stress for those of us who manage our lives daily due to the relief we get with opiate medications. I am not a drug addict. I have never abused nor diverted my medications. A person who is a addict will always find something to abuse. Depriving people with severe pain from the medications that offer them the best relief should be treated as a crime as is the fake prescriptions and drug pushing by physicians. Letting politicians and drug companies prescribe medications is not a wise choice. We all need to use a dose of common sense regarding this issue.

    May is Ehlers-Danlos awareness month. You can learn more about Ehlers-Danlos at EDNF.org

  • Tanya

    It will take leadership from within the chronic pain patient ranks to give a voice to and organize; to successfully remove the unjustly imposed burden of lack of access to opiate pain management options. I see the situation as an unintended consequence of the 1961 Convention on Narcotic Drugs treaty that has ambled on politically, without the strong and humane leadership required to counter the ‘big pharma’ forces from within our establishment, a sort of counter insurgency in that fading war.
    Nature has dealt one blow to chronic pain patients and with knowledge and deep understanding one can possibly reckon and learn to live with that fact. To have a second blow come from an unconscientious but powerful segment of humanity is an unpardonable crime, senseless and without justification.
    When both the dollars and cents and the human condition aspects of chronic pain patients’ lives are understood and more widely exposed, I believe your voice will be heard by the compassion that lives, sometimes little and sometime big, within all of us. I support establishing a National Pain Awareness Day. Your dignity is worth fighting for.

  • http://twitter.com/_Ashbet_ Andi S

    I left this as part of a comment, but it’s important enough to be seen above the cut:

    As someone recently said on our EDS support board, paraphrased because I don’t have a link handy — addicts and drug abusers use opiates to try to escape reality. We use it because we’d like to be able to *endure* reality and get our pain under control enough that we can *live* our lives as active participants, rather than bystanders.

  • Angelika Byczkowski

    Thank you all for your support!

    I was afraid some of the people who are still convinced that suffering pain is less harmful than taking opiates would pounce on and try to discredit my post or me. (Perhaps I’m just too insignificant to matter to them) Instead, you’ve all been very positive and have even added to my arguments, helping to make my case.

    The question remains: how can we get our experiences, ideas, and opinions in front of the decision-makers on healthcare policy?

    • LoriDA

      Angelika – Anyone can schedule a meeting with their state reps in congress and sentate. However, almost always you get to present your case to a aide rather than your elected official. They give you usually 5 minutes but if you “hook” them 15 or more is possible. Ones up for re-election are always good. And in gov. they care about $$$. I am not being heartless about pain by saying this. Make sure you use numbers – how many working people are affected,how many in their voting district, how many can not work due to pain, how many go on disability due to pain, how many realistically would work if the pain was treated, the cost of generic opiates vs disability and medicare and studies citing the safety of adequately treated pain patients in the work place. Charts and graphs are good. Bullet points are a must. Always leave a hand out. This can be done
      at both a state and federal level.