This is not an easy topic to write about, but it’s a really important one. Please be aware that this article contains discussion of suicide and self harm.
I’ll start bluntly: CRPS is colloquially known as the suicide disease. To most sufferers, that probably doesn’t come as much of a shock; CRPS is the worst pain condition known to man, according to the McGill Pain Index. It’s more painful than childbirth, than amputation of a finger; CRPS is as bad as it gets. If you’re new to the condition, that Index might help you understand that your suffering really is as bad as you think it is. No, you’re not making it up, no, you’re not exaggerating, and yes, you really do need and deserve all the help you can get.
CRPS normally begins after an injury, but occasionally it simply comes out of thin air. Whichever scenario applies, it is an arrival that derails your normal physical functioning; where there should be reducing or zero pain, the agony simply spirals further and further out of control. My own CRPS developed after a nasty but fairly simple injury that should have been largely healed after a few weeks in plaster.
CRPS affects your mind, too
There is no way that this terrible life-changing pain can occur without it affecting your mental state. Just none, and many CRPS patients will become clinically depressed. It used to be believed that, because so many sufferers were depressed, CRPS was more common in those already suffering from or pre-disposed to depression; that was until someone actually thought about the situation and realised that if you have hideous, life-destroying pain, well, then you’re probably very likely to be deeply unhappy, aren’t you? It’s now understood that of course most CRPS patients develop depression, simply because CRPS is such an awful condition to have.
And unfortunately, the sad reality of living with terrible pain that derails your life utterly is that some people can’t live with it. I can’t find any reliable statistics about how many people with CRPS commit suicide. There’s references everywhere, as if suicide and CRPS is some open secret that everyone knows about but no-one really investigates: that suicide is “900 times” more common in sufferers, that “70%” have attempted suicide, but nothing verifiable. What I will say is this: I think pretty much everyone I know with CRPS knows at least one person with the condition who’s tried to hurt themselves. I think pretty much everyone I know with CRPS has thought about it at some stage. I know I have.
I’ll take an important pause here: in this piece I’ve written about what to do if you’re feeling suicidal or having thoughts about harming yourself. If you feel that way, please go there now. Please. You’re not alone and you don’t have to feel this way.
The death of Bryan Spece
I’m writing this article now because I read about the very sad death of Bryan Spece on Pain News Network. Bryan was a chronic pain patient, being treated with opioid medication for ongoing back and carpal tunnel pain. He was under the care of Rodney Lutes, a physician’s assistant, working from the Benefis Pain Management Centre in Montana in the US. Rodney had prescribed Bryan a regimen of 100 milligrams of oxycodone daily and, according to Lutes, he was “doing very well” on this prescription. He’d been on this medication for around three years. Friends, family, and Lutes state that there’d never been any sign of depression during this period.
In March of this year, however, the picture changed. Benefis discharged Rodney Lutes for undisclosed reasons and his patients were transferred to other doctors within the clinic. For Bryan this was a death sentence.
Bryan’s oxycodone was drastically reduced by his new doctor. He was “not doing well” on this new prescription, according to a relative. “He was having money issues with not being able to work as often because of the pain and with having his pain pills cut back. He was just very stressed, constantly, about it.”
Tragically, Bryan was found dead at home from a gunshot wound on May 3rd. “The police found several text messages on his phone. He was talking to his friends there in Lewistown, stating ‘Come get my guns. I’m in so much pain, I might do something stupid.’” Bryan’s loved ones have no doubt that this is what eventually happened.
After Lutes’ departure from Benefis, form letters were sent to all his patients stating that their new doctors would probably change their prescriptions and advising them to “be aware that arguing or complaining about changes in your prescriptions will not alter your clinician’s care plan.” Another letter says “verbal or written complaints to staff… will not result in a change to your prescription.” In other words, you have no choice, no voice, and no chance.
Tapering opioid medication
The Center for Disease Control discusses tapering of opioid medication with the headline “Go Slow”, advising a maximum taper of 10% of dose per week and no more than 10% per month for those who’ve been on opioids for a while, like Bryan. It advises careful monitoring of a patient’s mental state during a taper of medication, and emphasises the importance of offering psychological support.
Bryan Spece’s dose of oxycodone was reduced from 100 milligrams daily to just 30 milligrams. That’s a reduction of 70%. I cannot find ANY literature anywhere that condones or even suggests that such a drastic taper is appropriate. It’s hard to view Bryan’s treatment by his new doctor as anything other than cruel and unusual. His family blame the Benefis clinic “100%” for Bryan’s death.
The American war on painkillers
I have written before about America’s war on opioids and the ever more stringent guidelines that are being presented by various government bodies and politicians, seemingly in some competition to be seen as the “hardest on drugs”. I also wrote about my fear that we’d count the impact of this policy in dead pain sufferers. The terrible, life-ending problem with this initiative is that it abandons the genuine chronic pain patient, the person, exactly like me, who is absolutely reliant on strong painkillers to live their life. These people are patients, not addicts; how dare anyone who signs the Hippocratic oath treat them with such callous and cruel indifference? “Complaining” about your new prescriptions won’t change anything. “Arguing” will have no effect either. How far do we have to go to be heard? Will you listen to me if I put a gun to my head?
As I said previously, there is no doubt that chronic pain goes hand in hand with depression. Life-altering pain that takes everything you love from you will undoubtedly render the most optimistic person unhappy. During the early years of my CRPS, there were times when I was significantly depressed and I seriously wondered whether I could continue to live this way.
Coping strategies for chronic pain
The reality, though, is that by gaining the right support for me, those feelings passed. I love my life now, despite the CRPS, despite the constant pain that invades every single thought, every single second I have. A significant part of that support was psychological, enabling me to think differently about my new situation. Some of it was surgical, with my spinal cord stimulator making a big difference to my pain levels and functioning. Another important element was pain management techniques, including the month I spent learning mindfulness at St Thomas’ Hospital in London.
A big, important, undeniable, essential part, however, is my daily opioid pain medication. Without it, I could not cope. Without it, I don’t know if I’d be here today. That’s not over-dramatising, it’s simply the truth. If my pills were taken away tomorrow, like Bryan’s were, I don’t know if I would be able to see a way forward through my haze of pain either.
It makes me mad as hell to know that we failed Bryan so badly that he couldn’t see a way to continue living. And it is our failure; we, as a society, have allowed these guidelines to be put in place and we’ve allowed genuine patients to be treated this way. Imagine the outcry if we allowed chemotherapy to be stopped for cancer patients. So how can we be allowing this to happen?
It may feel like we’re powerless, but actually we’re not, not completely. If you’re in the USA, then you can get involved with a group like Patients Not Addicts and they’ll tell you how to lobby your politicians to protect these essential drugs for chronic pain patients. In the UK, we’re not yet experiencing the drive to curb opioid medications like in the US but I fear it’s coming. I’ll continue to monitor the situation and will write about any developments.
I will end with a request: If you believe that pain patients are not addicts, if you’re a chronic pain sufferer yourself, if you love someone with chronic pain, if you’re simply someone who understands that no medication is necessarily ‘bad’ as long as it’s used appropriately, then please speak up. Make your voice heard. It is needed more than ever right now. If we don’t, then I fear Bryan will simply be one of the very first casualties of this callous policy. Don’t let his death be in vain.