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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.