Chronic Pain, Opioids, and Quality of Life: A Guestpost by Dan Malito

September is Pain Awareness Month in the US. One of the crucial issues to people living with high levels of chronic pain is the ability to have access to opioids. Yet, there are so many misconceptions that block that access. To help raise awareness and understanding about what it’s like to live with the kind of pain that requires opioids, I asked Daniel P Malito, author of So Young: A Life Lived with Rheumatoid Arthritis, to do a guest post on the topic. I’m very happy to say that he agreed! Please share his wonderful post as widely as possible. And while you’re at it, check out his book. It’s an amazing memoir of his life with RA.

Opioids.  The word conjures up visions of junkies in back alleys offering to sell a broken TV just for a half pill of Oxycontin.  It’s no surprise either, the government and other media outlets have spent countless millions telling the country about the prescription pill epidemic and its insidious effect on regular people.  Now, whether or not I believe that America’s pain med habit is as bad as they say, it doesn’t really matter.  What everyone seems to forget is the effect banning opioids will have on people like me, those who count on narcotics for quality of life.

There are many here in the U.S. who now believe that anyone who takes Oxycontin is an addict, and that there are other drugs that can be prescribed in its place.  Well, I’m living proof that this is untrue.  My pain doctor and I embarked upon a two-year quest to find a combination of narcotics that worked best to control my pain, and no matter what we tried, we ended up back where we started – Oxycontin and oxycodone IR (instant release).  For those who don’t know, Oxycontin is just a concentrated, time-release form of oxycodone.  The reason I take both the time-release version and the instant-release version (oxycodone), is because current pain treatment theory says that patients should have one pill to reduce overall pain, and one pill to take for acute, “breakthrough” pain.  The overall pill, Oxycontin, is taken three times a day, and lasts for eight hours at a time, which is part of the reason why it is so popular with addicts.  They can get a concentrated high from just one pill.  For me, though, someone who uses Oxycontin the way it is prescribed, it provides all day relief from pain severe enough to make most people stay in bed for months.

The current social attitude towards pain medicine is getting worse every day, and for anyone who studies history, it is quite easy to recognize that this is the fervor that comes before a product is banned.  I do believe this is the direction we are heading in, and for me, that would mean the end of life as I know it.  Let me break down exactly what my day would be like without Oxycontin.

First, I’d wake up in pain.  There’s no two ways about it.  I’d awaken with my joints aching, my back on fire, and my muscles sore.  Doctors like to quantify pain on a scale of 1 to 10, so I’d say that it would be a 10, most definitely.  The agony of bone rubbing against bone in joints that no longer have cartilage to cushion them would be experienced, in full, the minute I stepped off my mattress.  It’s a pain I hope none of you ever have to experience, and my pain medicine only alleviates about 70% on a good day, but that’s enough to live my life.

That’s assuming I was able to get to sleep at all, which is very unlikely without having narcotics to help.  When most people go to bed at night, they sleep soundly and get up once or twice to go to the bathroom or get a drink.  I get up every four hours to take another dose of pain medicine, because it’s just about the only thing that allows me to get to sleep.  When you have a disease like rheumatoid arthritis, the illness is much more than the sum of its parts.  What I mean by this is that R.A. has a systemic component that is difficult to put your finger on, but it makes life so much harder when this general, overall malaise is not counterbalanced by narcotic pain medicine like Oxycontin.  The severity of this uneasy, general pain varies from day to day, but it never goes away completely, and it can easily be the cause of a day spent in bed.  Without anything to combat this wonderful facet of my disease, I’d spend at least half of my time doing nothing at all but trying to weather the phantom, nebulous, pain that comes and goes with no rhyme or reason.

Talking about a general overall pain brings up another concern about doing without narcotics.  The “w” word.  Withdrawal.  Everyone who uses narcotics for pain control has to live with this demon.  Our bodies become physically dependent on the pain medication we take, and we are unable to go without it for very long.  Doctors claim that withdrawal doesn’t begin until 24 hours after discontinuing narcotics, but those of us who use high doses know that withdrawal symptoms can occur as soon as 8-10 hours after we have missed a dose.  It is difficult to explain exactly what withdrawal feels like, because just like the overall malaise R.A. causes, the symptoms are not acutely localized.  The best way that I can describe it is that when withdrawal hits, you feel like someone has shoved you into a freezer in your underwear, and while you are in this freezer, you also feel like someone has tied a knot in your gut that you simply cannot untie no matter what you do, and that’s just the beginning.  After a day or so, the real trial begins, and you vomit, sweat profusely, shake, and if you are very unlucky, your heart can even give out.  I know this because during one of my hospital stays, the nurses neglected to give me my pain medicine for an entire night, and I almost died the next morning.  If they hadn’t given me a massive dose of morphine when they did, I would have suffocated.  That’s withdrawal.

This is just a small taste of what can happen if those of us who rely on narcotics have our medication taken away.  Yes, some people chose to abuse these medications, but that is true of anything.  There are people who abuse over the counter sleeping pills – you can’t ban it all.  The simple fact is that narcotics are just another medication that helps to give people like me a quality of life that we would normally be unable to enjoy.  Unfortunately, Oxycontin has become a four-letter-word, and some very unfortunate incidents involving addicts have been held up to show the evils of prescription pain meds.  The truth of the matter is, though, that those of us who use pain medication to control actual pain have an addiction rate of below 3%.  If our narcotics get taken away, though, we will suffer a serious loss of quality of life, and that’s 100% a guarantee.

Thanks so much for sharing your reality with The Seated View, Dan!

Dan Malito is the author of So Young: A Life Lived with Rheumatoid Arthritis. You can read more of his writing on his personal blog, his blogs for CreakyJoints and at Huffington Post.


Caroline said…
Opiates help me a lot. I am on the Butrans pain patch. Awesome! Last a week. I have RA and fibro so I know what its like to live in paid because I do it every day. Available in three levels. Check them out. Good luck.
Kim Miller said…
It is no different than taking away a diabetic's insulin or a patient with hypertenion's blood pressure medication away. Take away out pain medication and take away out ability to live a full and quality-filled life. Now we are not only cut off, cut down or at the very least subjected to treatment as if we are addicts looking for a fix, all to receive what should be routine medical treatment.


“Opposition to Kentucky HB 1-Reform HB 217 aka "Pill Mill Bill"
george blake said…
so glad i stopped by again and got to read dan s article.he writes so well, i wish i could put him in a counter commercial or in front of congress to tell the story. the story is that of 1000s,heck maybe a million peoples story of what life is like for those of us that suffer chronic pain.but even just as bad is how we are looked at,i want to wear a sign that says i work everyday and have for 40 yrs,since i was 14.dont treat me or look at me as though im some junkie,the shit barely works on the pain,how the hell someone gets high off of it is beyond me. i make sure i dress exremely well when going to the pharmacy, i wear my sunday best,still you hear the whispers of the clerk to the pharmacist,then the quick look to the customer, all i can say is wow. and to hear the govt and a few medical clowns say its out of control, people dont need them, no just take us out in the field and end our misery. sooner or later my moaning from pain will make you wanna shoot me, my wife,yes i have one mr pharmacist lol for 29 yrs ive had one,she walks the path of pain with me, the rubs,the hot baths,the massages, hope the govt dont take her away too !
abodyofhope said…
Excellent, and so true.
Until these chronic pain conditions have better treatment options, often opioids are the only relief we are getting- and it's only about 30% relief anyway. But without it, there would be SO MANY MORE suicides than there already are.

Thank you for telling the truth. We must have our voices heard.
Anonymous said…
I am so well as my husband. My rheumatologist, who is treating me for Fibro/CE/CFS prescribed oxycontin 10 mg. 4x day and oxycodone 10 mg. 5x day yesterday during my office visit. I went to my regular pharmacy and they didn't have oxycodone pills in and I was told that I would need a pre-auth from my insurance company for the oxycontin. So I called my doctor's office and explained this to the nurse. She told me it would take the office 2 days to apply for a pre-auth and another 72 hrs. for the insurance company to approve it. smh Then, because I was unable to get of bed today because my pain is so severe, my hubby went to 6 pharmacies to try to fill the oxycodone prescription. None of the pharmacies had any in stock. NONE!! My husband came home so frustrated because he just doesn't understand why these pharmacies would be out of a medication that people take on a daily basis in order to relieve their pain even to a tolerable level so that they can function at a disability level. I just started crying. Why? Because until I can get those prescriptions filled, my pain is going to be unbearable, affect my breathing, sleeping, eating and because the pain gets so bad, I vomit. I'm sorry, but after 10 years of being in constant severe pain, I have no more fight in me. So what are my options? I don't see any other than living in pain...or not.
Unknown said…
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