*Let me preface this post by saying that the parties interested in the uses and prescriptions of pain medication are in a huge uproar lately, with the opioid addiction crisis pitting those who want to seriously restrict opioid availability against those who legitimately need this type of medication to function. I find valid arguments on both sides. This post is about my own experience, the options my doctors and I discuss, and the decisions we make in the interest of my health. The post is not a judgment against those using different methods, making different decisions, using different doctors with different medical opinions. And of course, I’m just the patient here. Talk to your own doctor before embarking on any kind of medical treatment.
So, I finally sucked it up and made an appointment with the pain management clinic. I don’t know why it took so long. Well, I do. My pain was kind of sort of managed, except for what we call ‘breakthrough’ pain–the bad sort that comes of a sudden but isn’t representative of the everyday. After a very rough summer (which included an oh-so-graceful tumble down the stairs and a badly sprained ankle that won’t stop haunting me), some of my better joints have gone over to the dark side. The pain and swelling are worse than they have been. I have a new GP who says that pain management is my rheumatologist’s job, despite my rheumatologist’s making it clear it is expected that the GP will handle that part of care, and I hate the feeling of being turfed.** (Gossipy aside: I trust my rheumdoc on this one for a few reasons. One is that she has been a great rheumatologist–she listens, and adjusts treatment according to my experience and her research. Two is that in every previous constellation of doctors, the GP has been the pain management person–across three different medical insurance companies. Three is that when after the new GP noted he wouldn’t do it, and that the company would punish him if he did, I agreeably told him I would let my rheumdoc know that he wanted her to handle that part of my care, and he very quickly said, “Oh, no, no, that won’t be necessary…”. Well, it’s necessary she know if you’re dropping that part of my care, right? And why are you sweating, DoctorBoo? Is it because you know Rheumdoc has no time for petty bullshit? I mentioned you at my last appointment with her and she said she’d handle it. Meaning you. OooooooOooOoh. Anyhoo. Moving along.)
So. Pain management clinic. When I say it aloud, my mental image is of some run-down boarded up junkie house. Intellectually I know that’s unfair. Braincanvas doesn’t care. I mean, the pain management ‘clinic’ isn’t a clinic at all in the way I think of a freestanding medical office–it’s in my GP’s small bright office, same receptionists, same waiting room, just down a different hallway. It’s part of my health insurance company, so it’s covered with a referral, which I had gotten months ago when I thought to ask for it. The doctor was young and friendly and had reviewed my record before I arrived. He seemed very well informed and was pleasantly surprised when I told him I was a pain in the ass patient because as a librarian, I read a lot of the medical literature about new discoveries and treatments–he said the medical librarians were tech most important part part of his medical education. Instant love, y’all. We’ll call him Doctor Unicorn.
Doctor Unicorn and I went over my medical history, recent medical record, medications and current practices. The good news is that he said I’m doing everything I can (well, when I go to yoga, which I admitted I’d lapsed in). The bad news is also that he said I’m pretty much doing all I can. Given that opioids make pain worse, and that this effect seems especially prevalent in fibromyalgia patients, medication is off the table. Except for a not-really-evidence-based treatment…
Low dose naltrexone.
My thoughts as the pain doc is talking: Naltrexone, naltrexone, why does that sound familiar? Something about drug addicts. What they hit heroin overdoses with? No, that’s narcan. Naltrexone…ah! Used to help manage alcoholism and opioid addiction. Why do I know this? I read any and everything, and I’m a librarian. I’m like an information magpie, I collect it all.
(I know all sorts of random shit. You should make me your call-a-friend option on your get-rich-quick show. Friends and family use me for trivia and random things like knowing off the top of my head at 2am out of a dead sleep what the name of the dog-dragon-thing in The Neverending Story was. His name was Falcor, Patrick, and he was a luck dragon. Seriously. How have I failed you that you didn’t know that?)
Wait. I don’t have an opioid addiction and my gut issues mean I drink a few times a year, at best. (I have three bottles of cider that have been in my fridge for about eighteen months. College Me is so very disappointed in Current Me and Me of Eighteen Months Ago who drank half of one cider, poured the rest of that one out, and abandoned the other bottles beside the mustard.) I have pain medication (not a lot and not the good stuff, don’t come to my place to rob me, you’ll be disappointed), but I only use it when things get so out of control that I stay home from work and tend to myself.
Naltrexone is effectively the anti-opioid, binding opioid receptors–bound opioid receptors can’t bind to opioids, thus no high. No high, no fun to drug use. That’s the hope, at least as I understand it.
An aside on painkillers, with the note that I am not a doctor, so this is wildly oversimplified. The problem with opioid use for long term and chronic pain conditions is that it makes your body more sensitive to pain over time. (See a good layperson’s article here.) If you become more sensitive to pain over time, you increase your opioid dose to combat the pain…it’s a terrible loop, and difficult to get out of because pain sucks, and no one wants to volunteer for more of it than they have to. Thus one of the reasons opioid addiction is so prevalent. There is some evidence that opioid use actually prolongs pain (you can read the study here).
So using opioids is problematic on the face of it. I have some other considerations. I happen to have a family history of addiction on my father’s side, which makes me very wary of using painkillers. (In fact, I often err on the other side, which is waiting too long to take medication. Doesn’t sound awful, until you realize that it triggers my various inflammatory responses to get worse, and after a certain pain level, my blood pressure shoots through the ceiling. Emergency level care follows, and I hate going to the emergency room almost as much as they hate seeing a chronically ill patient coming through their doors. Almost.) Opioids will temporarily help me with joint pain from the AS, but it tends to make my fibro flare, another reason I avoid them since I find the fibro more difficult to manage than the AS. (I know what I can do when inflammation goes crazy: steroids, rest, diet. What the hell do I do with feeling like I’m being stung, or filleted, or burned, when there’s nothing there but hysterical nerves?)
Why my hesitation, then, for the low dose naltrexone? Well, the fact that Doctor Unicorn prefaced and postfaced his mention of it with the fact that there’s very little peer-reviewed evidence-based good double-blind studies on the stuff (told you he was a unicorn–a sexy Doctor Unicorn who knows what peer review and double blind and evidence based mean, and holy hell I need to ask this man on a date when he’s not reviewing how physically screwed up I am). The Stanford study often cited had a total of eight subjects; their next study had closer to fifty. Meh. Doctor Unicorn also mentioned that there were unlikely to be any large scale studies since naltrexone has gone generic, so there’s no profit incentive to fund additional research into other uses for it. Sad trombone. He made it even less attractive by noting that it requires a special pharmacy order and so the monthly cost is expensive, and that of his four patients who decided to try it, two dropped it because of the cost, one saw no improvement, and the other moved out of state. The bow on top is that you can’t drink or take opioids while on the naltrexone, so no opioids even on bad breakthrough pain days. (The booze doesn’t much matter to me.) On the bright side, the only real side effect reported has been more vivid dreams. Girl-and-boyfriends, I’m a trained Jungian. Bring me some dreams! That’s not a bug, that’s a feature!
And so he asked me to go read the Stanford articles, to think about it, and to let him know if I wanted to try it. Why am I hesitant? Lack of research, for one. I’ll also admit to being really wary of letting go of the option of pain meds for breakthrough pain. With the low dose naltrexone, I lose the option to at least take something to knock me out so I can sleep through a bad episode, to take the edge off enough so that I can think. Those days are (thank all the gods) few, but when I do have them, they’re doozies.
But shit, I’ve tried everything else. What do I have to lose in trying one more treatment option? Sigh. Time to see if I can invent some more magical room in the budget.
**I learned this phrase from an ER nurse who found me in tears after my primary care doc sent me to the gastroenterologist, the GI doc sent me to the ER, and the ER told me to go home and see my GI doc. She said, “You’re being turfed, honey. That’s what they call it when they keep bouncing you from doctor to doctor. Happens a lot when they don’t know what’s wrong and don’t want to be the one stuck having to figure it out.” I wish I remembered her name, she was very kind to a pained, weeping me.