CRPS, Chronic Pain and America's war on painkillers

It’s clear that the abuse of opioid painkillers is a major problem in the USA. According to the Center for Disease Control, more than 40 Americans die every day from overdoses of strong opioid medication, like morphine, oxycodone and fentanyl. Between 1999 and 2015, more than 560,000 people died from drug overdoses; that’s equivalent to the entire population of Glasgow being wiped out in just six years. Americans consume 80% of the global supply of opiate medication, with hundreds of millions of prescriptions written every year. Headlines scream and terrify: “How the opioid epidemic became America’s worst drug crisis ever”, “America’s indiscriminate killer”, “Inside a Killer Drug Epidemic”. The papers are full of hollow-eyed people telling their sad stories, starting with a doctor’s appointment for a bad back, ending with scoring heroin on a street corner.

If you read only these stories and statistics, opioid painkillers appear to be terrible drugs that have no place in responsible healthcare; they’re simply a spiralling path to addiction, criminality and often, eventual death.

But the reality isn’t necessarily like that. I, like most of the CRPS patients I know, take opioid painkillers daily and have done so for over five years. I imagine I will continue to take them for the rest of my life, if there is no breakthrough treatment. The drugs I have available to me on prescription include oxycodone, in both immediate and long release versions (the highly stigmatised OxyContin) and co-codamol tablets. If you heed only these headlines, you’d probably expect me to be a shambling, semi-conscious being, barely capable of functioning as an adult and concerned only with where my next tablet is coming from.

But I’m not. I’m a wife and a stepmother. I’m a writer and a crafter and a pianist, never without my knitting to hand. I’m a lively conversationalist, a good friend and listener. I’m a rugby fan, a dogwalker and an avid reader. If you met me, I doubt you’d know that I was on any medication at all if I didn’t tell you.

I’m not exactly who I used to be, prior to my illness, but I’m not a shadow of a person either; by using all my coping strategies for dealing with my pain, including my spinal cord stimulator, mindfulness, pacing, and yes, opioid pain medication, I live a worthwhile life that I love. There is a world of difference between being dependent on a drug to help you function and being addicted to it.

And there are huge numbers of chronic pain patients in the USA who are exactly the same as me. I am not denying that there have been problems with over-prescribing of strong pain medication and with sham ‘pill mill’ operators setting themselves up as legitimate pain management centres to hide drugs for cash operations: what I most definitely am saying is that genuine patients are not addicts. There are many many many of us who need strong pain medication to make it through our days and without access to these medicines, I have no idea what the future will hold.

So how did this epidemic start?

It’s easy to lay the blame for the ‘opioid epidemic’ at the door of big pharma, although it’s not the only factor. In 1996 Purdue Pharma began selling an opioid painkiller called OxyContin. Because the drug delivered its oxycodone at a controlled rate over several hours, they marketed it as less addictive than other immediate release medications. Purdue aggressively targeted physicians and boosted sales through a range of incentives including all expenses paid trips. They gave away thousands of branded items: Oxycontin hat, anyone? Stuffed toy? Well, how about a “Get in the swing with OxyContin” music CD? Although it reads like a scene cut from Brass Eye for being too ridiculous, these are all genuine. All this meant that sales of Oxycontin in the US grew from $48million in 1996 to almost $1.1billion in 2001. I don’t have the medical training to determine whether OxyContin and other painkillers were over- and inappropriately prescribed in the USA. All I can say is that there were certainly a massive number of opiate medications given out; around 300 million pain prescriptions were written in 2015. That’s enough for every American adult to have their own bottle of pills.

Birds come home to roost

The fundamental issue here is that OxyContin isn’t and never was less addictive than other painkillers. Even more problematically, it didn’t take long for enterprising individuals to discover that if you crushed the tablet and then snorted or injected the results, you could get an extreme high like that of heroin.

Of course, the doctors prescribing these pills probably did their best to ensure that patients weren’t abusing their medication, watching out for signs of addiction and attempting to taper or eliminate pain meds when no longer required. But many doctors lacked appropriate training in this area and it didn’t contain the growing issue; those who developed an addiction to a legal painkiller could progress to obtaining this drug illegally when their legal supply stopped, or, as street prices for ‘Oxys’ rose, by switching to the cheaper and more easily available heroin. It’s well known that you develop a tolerance for opiates, meaning that it takes more and more to achieve the same effect, whether that’s effectively controlling pain or providing a high.

By 2000 widespread reports of the abuse of OxyContin started to arise. By 2012, a study was published stating that “76 percent of those seeking help for heroin addiction began by abusing pharmaceutical narcotics, primarily OxyContin”. Eventually Purdue Pharma was brought to task over their fraudulent ‘less addictive’ claim, and in 2007 the company pleaded guilty to misleading the public about OxyContin, agreeing to pay $600million in lawsuits. Its president, top lawyer and former chief medical officer admitted deliberately lying and were fined $34.5million as individuals.

It was an unholy mess, but the horse was well over the horizon before anyone even thought about whether they should close the stable door.

So where are we now?

Opiate is a dirty word. In 2016, the Center for Disease Control published new guidelines for prescribing opioids for chronic pain, limiting the amounts that can be prescribed and urging doctors to explore other methods of pain management. Many states are now setting their own, ever more stringent standards in a battle to stop the rising tide of overdose deaths; Ohio’s governor, John Kasich, last week announced that in his state opiate painkiller prescriptions would now be limited to no more than seven days for adults and five days for children. Governor Chris Christie of New Jersey has signed into law a bill stating that initial prescriptions can now be no longer than five days which he proudly describes as “one of the toughest in the US”. With President Donald Trump asking Christie to take on a new advisory role to his government on how to curb opioid abuse, it’s very clear which way the wind is blowing.

What does it mean for chronic pain patients?

I don’t doubt that the curbs on opioid usage are being put in place with one single good intention: to stop people dying. But the reality is that it’s hard to overstate quite how devastating this could be for those of us struggling with chronic pain. I think it’s quite possible this law could create more deaths in the chronic pain community, from people who can’t live with their pain and can’t get the medication to deal with it.

If I didn’t have strong painkillers for my CRPS then I wouldn’t be able to get out of bed every day; it’s that simple and stark. I have explored every treatment that exists, including physio- and hydrotherapy, spinal cord stimulators, psychological treatment and mindfulness. There is literally nothing more that I can try. What will happen to the American CRPS sufferers who simply have no other treatment options left? Will they be denied effective pain medication? Will patients get access to painkillers whilst they’re on waiting lists for other treatments? And will this attitude towards opiate painkillers be adopted by other countries?

As pain patients, I believe that we should take the smallest amount of painkillers we can cope with. I believe we should use every treatment and technique we’re offered to manage the pain. We should lead the best and most fulfilling lives possible, learning to live with the pain rather than in constant battle with it. That’s the unspoken agreement we make with our doctors; we do as much as we can, give our lives as much meaning as possible and they believe and respect our pain, giving us access to every tool they have to help us live as well as we can.

And pain medication is an important tool that shouldn’t be stigmatised. I’m very aware of the risks of addiction, but CRPS is the most painful condition in existence and personally, I can’t cope with it without painkillers. If you can, then I’m both envious and impressed. But the fact that I can’t do that, the fact that I need strong pain medication to function, to live my life; I won’t apologise for it and I refuse to be judged for it. I am not an addict. I am a patient. And there are millions more out there like me who may be about to lose this vital weapon against pain. I don’t think I could live without my painkillers. It frightens me that the American CRPS sufferers I know might not be able to do so either.