Opioids and Chronic Pain: What’s the REAL Epidemic?

Advocacy

I have access to opiates. And I’m curious about what it would be like to get high. The two are connected, aren’t they? It’s a no-brainer, right?

Not if you have severe chronic pain, like me.

For people like me, opiates allow us to function. For people like me, they are essential for any quality of life. For people like me, opiates DO NOT give you any kind of a high. They don’t eliminate pain completely, either. All they do is dial it down to a slightly more tolerable level. And for people like me, they are a lifeline that is severely threatened right now.

If you’re thinking “doesn’t taking opiates mean you have an addiction?”, the answer is “NO”. Taking opiates continuously means a physical DEPENDENCY, but that’s very different from addiction. Dependency is part of addiction, but addiction is not always part of dependency.

If that’s confusing, my story may help you understand.

For about six years, I took 30 mg of extended release morphine twice a day, prescribed and monitored by my doctor. I definitely had a physical dependency. If I forgot or went too long without my medication, I got sweaty, shaky, and my pain levels would amp up quickly. But I did not have an addiction.

I had the option of a third dose each day, which I almost never used. Someone with an addiction would not have been able to resist that third dose. In fact, if I had an addiction I would not have stayed at the same dose for six years. Addiction means having both a physical and psychological need for a substance to cope with or escape everyday life. Removing access to a drug will not end the addiction, as the person will seek out other substances to cope, both legal and illegal.

As the hysteria over opioids escalated, I was scared I would be suddenly cut off from my medication. So, without any prompting from anyone, I decided to go off the morphine. It was completely my idea and my choice, and I did it completely on my own.

If you’re thinking “well, if she could just go off it then she didn’t really need it”, you’re dead wrong. It wasn’t easy to get off at all. My pain levels skyrocketed, my activities became much more limited, and I was suddenly completely unable to sleep, so several (more expensive) meds were added.

“But you’re fine now without it though, right?”

No, not right. I’m in a lot more pain all the time now. Sleep is very elusive, and usually torture. Lack of sleep increases pain, which then makes sleeping even harder. It’s a vicious cycle. Plus, my illness (Ehlers Danlos Syndrome) causes my ribs, vertebrae, and sacroiliac joint to slip out of place almost every night. Any and all of my joints can dislocate easily during the day too. Fatigue makes my joints even more unstable. If you’ve ever dislocated a joint yourself, or know someone who has, imagine that pain happening in multiple joints 24 hours a day, every day, while continuing to do all your regular activities.

Maybe you’re thinking “… but what about all the people that die from prescription drugs?” Well, let’s take a look at that:

The Centers for Disease Control (CDC) has admitted that they’ve grossly inflated (nearly doubled) the number of deaths from prescription drugs. The reason their numbers are so wildly incorrect is that they included heroin (NOT a prescription drug) and illicit fentanyl in those numbers (Anson, 2018). This doesn’t diminish the tragedy of overdose deaths in any way. However, it is PRESCRIPTION opioids that are on the hit list.

“But people get hooked because they get prescribed opiates, right?”

Not quite. Judith Paice, PhD, RN, director of the Cancer Pain Program at Northwestern University said that 75% of people who started their addiction with prescription drugs never had a legal prescription. It is incredibly rare for a chronic pain patient to misuse opiates (Chriss, 2017). We don’t get high and we know how precious they are.

If you’re thinking you’re lucky this doesn’t affect you, wrong again. You and your loved ones may not have chronic pain now, but there’s absolutely no guarantee that you never will.

Think about what it would be like to have surgery or severe cancer pain and only be given Tylenol.

Sounds extreme? You’re right, it IS extreme. AND it’s already happening. Oregon Medicaid wants to force all chronic pain patients completely off all opioid pain medications, and other private and government insurers will follow suit (Wargo, 2018).

“But these new rules about opioids were made by experts for good reasons, right? They couldn’t be hurting people!”

Wrong again, on several counts. There are no “rules”, only guidelines that are being misused to pressure and intimidate our doctors. The group of “experts” who set these new guidelines included only mental health professionals, and absolutely no doctors who specialize in pain management (Rodis, 2018).

The idea of “not hurting people” couldn’t be farther from the truth. Frequent use of a neural pathway strengthens it. This means that the longer you have unrelenting and untreated pain, the more likely you will continue to have pain, even after healing. The misguided response to the so-called “opioid epidemic” has spawned another epidemic that is rapidly escalating. It’s an epidemic of desperation that is killing people with chronic pain. People on established and effective pain management plans are suddenly being refused the one thing that allows them to function. Left in agonizing pain with no hope of reprieve, many take desperate measures. For every chronic pain patient that successfully commits suicide, there are likely at least a thousand more considering it – it’s a common topic of discussion in chronic pain groups now. That desperation drives some to search for alternatives, and they end up dying from street drugs. Jon Rodis, a national healthcare advocate and chronic pain patient, has seen the desperation epidemic and subsequent deaths escalate rapidly. He told me of one doctor who lost four patients to it (Rodis, 2018). All of these deaths were completely preventable.

One last observation: Addicts use opiates to escape from the world, to avoid living. Chronic pain patients use opiates to be able to engage with the world. They are not the right treatment for everyone, but for many of us, they enable us to live productive lives, to work, to love, and to participate. Simply put, they allow us one of the most basic rights of every American guaranteed in our Constitution – to live. We will never stop fighting for that, and we invite you to join us. Our lives depend on it… and yours may too.

References

Anson, P. (2018, March 21). CDC Admits Rx Opioid Deaths ‘Significantly Inflated’. Retrieved from Pain News Network: https://www.painnewsnetwork.org/stories/2018/3/21/cdc-admits-rx-opioid-deaths-significantly-inflated

Chriss, R. (2017, July 25). The Myth of the Opioid Addicted Chronic Pain Patient. Retrieved from Pain News Network: https://www.painnewsnetwork.org/stories/2017/7/25/the-myth-of-the-opioid-addicted-chronic-pain-patient

Rodis, J. (2018, August 15). (C. Sachs, Interviewer)

Wargo, H. (2018, August 16). Opinion: The Battle Against Opioids Could Mean Misery for Patients in Pain. Retrieved from The Western Journal: https://www.westernjournal.com/opinion-battle-opioids-mean-misery-patients-pain/

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6 Comments on “Opioids and Chronic Pain: What’s the REAL Epidemic?”

  1. This fits me to a tee! I have been under pain management for over 15 years. I have had back surgery 7 knee surgeries. I have arthritis sore hip and a shoulder that was injured while serving in the USAF. I am retired after 20 years. I am 100% Disabled through the VA. With the new DEA guidelines my quality of life has been drastically reduced. I was on 240mg oxycontin twice a day and could take 60mg of oxycodone for breakthrough pain. (I was on those dosages for more than 10 years)In the last 4 months I have been cut down to 40mg twice a day and 20mg twice a day for breakthrough pain as needed. I am in constant pain, I have never abused the system followed all the rules. When my Primary care physician gave me some Soma for muscle spasms I contacted my pain clinic to ask if I could take them it took 7 days for an answer. I just decided not to take them because of the “hassle “. People don’t understand what chronic pain can do to a person it’s terrible. I don’t do much of anything since they lowered my dosages. I am truly sorry for the mishaps with Opiates that people have. It proves that the people who need them are having to live with the mistakes of others. It’s almost like the needs of the few out weigh the needs of the many(yes I know that is backwards). Thank you for writing this article.

  2. This is so true they are denying us our right to live sometimes our last days on earth to the fullest and without pain. Something must be done from chronic pain management stand. Everyone is trying to help the addicts but what about the addicts that need require and must have to live life to its fullest

  3. What can those of us with chronic pain do? I want to know. I am still on my meds but constantly feel scared that i will not have anything to relieve the constant body pains i have. I have had 3 spine surgeries, both knees in need of replacement and two torn shoulders among other things like Lyme disease, osteoporosis and arthtritis. With medication i still can walk my dog every day, do some gardening etc. I can’t take NSAIDS much due to GI problems. Tylenol never worked so what i do is take my pain medicine just to take the edge off. Most of us feel isolated and shunned. There is so much misinformation around. Would love to know if there are any sites where chronic pain patients can go to try to make some changes in the current medical system.

    1. Hi Elisabeth! It’s definitely a huge issue, and I believe that one of the most powerful things we can do is to talk about it. When we give our personal story and face to the issue, it becomes personal to the people thinking and hearing about it. It’s not easy to do, of course. There are some facebook groups that focus on these issues in different ways. I suggest you do a search for things like “chronic pain medication” and things like that. If you get stuck, please reach out and I’ll see if I can suggest a couple. Above all, you KNOW that you are using your pain meds responsibly. As much as you can, share your story with people, with politicians, with people in power. My best wishes to you, and keep going. If you’d like some support on your journey, please reach out to me.

  4. I’m also a chronic pain patient that isn’t getting adequate medication or pain relief. It’s disheartening and wrong. It affects my ability to function on a daily basis. My pain is acutely chronic. I’m also in training to be a life and recovery coach and will be specializing in LIVING with chronic pain, mental health, also harm reduction and recovery. I just wanted to say that this is such an excellently written article that hits the nail right on the head. May we all find the relief we need to be able to function as well as possible. Thanks for the great article.

    1. Hi Michelle!

      I’m glad my article speaks to you. This is a growing coaching specialty, for sure, and SO important. I believe that one of the great untapped sources of wisdom and power in the world is us – disabled and/or chronically ill folks. Go you for working to bring your brilliance into the world, and helping others while you’re at it! If you’d ever like to connect, please let me know. In my experience, chronically ill coaches have unique and incredible insight and passion, and we are changing the world!

      Congratulations on your training, and best wishes as you move forward.

      Cara

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