On Pain, Knowing Thy Body, and Doctors Playing Dumb

We all talk about pain. I talk, I write. There are certainly people who write about it better than I.* It makes me sad when people tell me their stories and say, “But it’s nothing compared to what you go through.” Full stop, here, folks. Let me tell you my personal philosophy on pain. I do not think we can ever compare our pain to another’s. We can sympathize, and those of us with similar issues can empathize, but one of the things I’ve learned from being in pain is that I have no place to judge another’s. Pain is weird; something that doesn’t bother me will drive someone else insane, and vice versa. And there’s no good way to compare pain–think about the pain of a healing broken arm…imagine having that arm, that ache. And now imagine you also have a cold sore, and accidentally bash into something with your lip. ZING, suddenly you’re like “What broken arm, dude, I’m pretty sure both an Alien and a Predator are clashing on my face right now.” Pain, and pain. And then the later song of the broken arm with the high aria of the throbbing lip. And then you meet someone who just slid their hand into a banker’s box and sliced open every finger on manila folders. DEATH. DEATH PAIN.

We call all of it pain, but it comes in shades and flavors and degrees. When you tell me about your pain, I am not cataloging it against my own. I take your story of your pain, and I hold it, alone, on its own. Your nerve pathways are not mine, they are your own, and if you say that the sunburn felt like being flayed alive, I am sad and cringing and wishing you cool-aloe-and-cotton-sheet feeling. I promise.

You just learn your body, I think, in a different way, with chronic pain because it is always there. I lived in my head before I got sick, and still do to a large extent, but now there is always the sense of body. An undertone of pain. Like cicadas in my head and thrumming in my bones, in the background, if it’s at a 4. Or elevator music that you hum to but aren’t really paying attention to, if it’s at a 5. At 6, the unpleasant pressure of speaker feedback thrumming through bones, distracting. You learn to distinguish between kinds of pain happening simultaneously–with both fibromyalgia and spondylitis, this is both useful and not. Not, because it doesn’t really matter and it’s pain no matter what the cause is. (Everyone knows this at some level. It doesn’t MATTER what smashed my hand what matters is that the hand is SMASHED.) Useful because it lets me know which doctor I need to think about calling, and useful because it lets me know if there’s anything I can do to alleviate it.

So when I have pain that doesn’t fit into my fibro-body-knowing or my spondy-body-knowing, I pay a bit more attention because it isn’t something I’ve managed to turn into background noise. You should hear me cuss when I smash my toes into furniture or doorframes (seriously, why can’t I stop doing this?). I tend to get cold sores/fever blisters on my lip when I get sunburned, and those hurt like the dickens.  Taking an Enbrel injection while it’s still cold, because I didn’t let it come all the way to room temperature is like injecting liquid fire into myself.

When I fell while moving in early June this summer, I knew. First of all, I don’t bend that way. Second of all, my ankle didn’t hurt right away. It didn’t anything right away – it didn’t even ankle. It was like it went offline. Sorry, unplugged, power surge, need a minute, taking a powder. When the feeling came back an instant later, that sucker hurt. I could put weight on it, kindasorta, so Mom deemed it a bad sprain and made me ice it, raise it, stay off it, use my cane. Sprains are notoriously slow to heal, she said, so I waited three weeks to call the doctor. Surely, I thought, it should feel better by now, even a bit. I got sent to an overflow doc, got a quickie x-ray that he put up into the light, said “I don’t see anything, you’re fine” and sent me along. Limp, limp. Another month, then send an email to the usual primary care doc, who says “You have both a joint disease *and* fibromyalgia, of course it still hurts. Sprain. Bad sprain. Fibrospondy it’s just gonna hurt sprain.” Limp along another month, email again, and I can HEAR the sigh over email when the doc says to come in for new x-rays. Naggy patient pain in the ass. Get new x-rays. That was last week.

Yesterday, I get to the office after an early morning rheumatologist appointment where I mention the sickly-hurt, the not-spondy, not-fibro hurt of the ankle, but I don’t mention it aggressively. The spondy itself is out of control, and both the joint pain and my inflammation numbers say so, I do not have to make my case, the normal range is 0 to 20 and I have an overachiever score of 86. I need RheumDoc to focus on that. I do not have to plead. I do mentally close my eyes and pray for deliverance when RheumDoc ups my prednisone. (At least I know this will help with the spondypain, so there’s that.) Driving down to Los Angeles and back plays all hell with the ankle. Funny how it takes longer for it to hurt from walking than it does from those tiny, tiny movements on the pedals. Tiny movements, tiny tortuous movements. Gah.

Anyway. Back from RheumDoc, nursing the ankle. Open the email from the GPDoc. “Actually, it appears your ankle is fractured. I have put in a referral for you to see the podiatrist.” Pretty cold for a dude who fucked up. I have been complaining about this wrong-hurt sick-hurt ankle since I busted it in early June. Tomorrow is September.

And that bitch is fractured.

I do not care that, as my mom says, it doesn’t really matter because they’ll just tell me to wear a boot or cast it, and I cannot function as a single woman in a second floor apartment with a basset hound and bad joints and a later-this-month flight to Canada if they cast it.

Do. Not. Care.

I care that I have been telling the doctor and his minions that something is wrong and they didn’t believe me. Like it wasn’t a thing because since I have pain everywhere, another bit surely didn’t matter, didn’t mean anything. Like they know my body and its signals better than I do.

And Earlier Me of 2010, 2012, 2014 might not have nagged the doc about it, wanting to be the Good Patient, but I am tired. And annoyed. And doing research on women’s bodies for the PhD dissertation I’m working on, there are stories and then more stories about how women’s pain is ignored or belittled or downplayed by a medical profession run by men, based on knowledge largely gained from men’s bodies.

But I don’t need the research, do I? I’m online. I have female friends. When we start to tell stories, they are shades of the same insanity. I hurt, something was not right, the doctor didn’t listen, didn’t believe, didn’t care, made it difficult for me to be diagnosed, believed, treated. (Never a mention of getting our money back, of course.) Oh, I get angry, and oh, I am weary. Ah, Silly Me of My Twenties, who thought she had the world by the balls and that feminism had done its job so what was the big deal? Silly girl, I miss you. Now I am surrounded with fellow women warriors, scarred, scared, and mistrustful of the medical establishment that is supposed to help us. And it brings me to tears to think of the people just learning to be sick, to live with their illness, who are too cowed to nag.

I wonder if the popularity of naturopaths and natural cures (the well-meaning and the insane alike) is due to the fact that the folks marketing that kind of care listen, and listen with compassion, and at least pretend to believe, whether their treatments are quackery or not. (And not for nothing: it’s not a placebo if it works. Say it again for those in the back.) Another thing from the women of my tribe: even if the care remained subpar, just having a doctor listen to us would raise our opinions of them. We don’t even dare stretch into hoping that they’ll believe us.

We’re not crazy, after all.

We’re in pain.

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*I will refer you once again to Eula Biss’s essay “The Pain Scale” for what I think is one of the most true and moving considerations of pain.

Roid Rage: Some Scattered Thoughts on Prednisone

Let’s talk about something folks with inflammatory disease have a love-hate relationship with: prednisone. An immunosuppressant, it is used for diseases like lupus, rheumatoid arthritis, ankylosing spondylitis, multiple sclerosis, and the like, as well as for severe allergies and other ailments. The list of side effects is a bit horrific and many of them are common for those of us who are on it long-term. Prednisone causes mood change, high blood pressure, messes with your blood sugar, causes cataracts and glaucoma, reduces bone density and causes osteoperosis. When you’ve been on it long term, you can’t just stop taking the stuff, you have to taper slowly.

That sounds terrible, right? (It should sound terrible, and not like something you want to engage in on a Sunday for shits and giggles.) So…why? Well, speaking from my own experience, I literally cannot walk without it. (When I use the word “literally,” I do mean it the way it was intended.) When I first got sick, no one knew what it was. I went to physical therapy for what they thought was thoracic outlet syndrome. I had my gallbladder out (a cholecystectomy, I was pretty proud of learning to spell that back when I had it), which turned out to be unnecessary since what I really had was a problematic levator scapulae (muscle that runs from your neck to up under your shoulderblade). I went back to physical therapy because every time I worked with my personal trainer and did anything with impact, I found it difficult to move for the next week or two. I had used a personal trainer to get fit before, and this hurt wasn’t the worked-too-hard-at-the-gym hurt, or an oh-shit-leg-day hurt, it was what I can only describe as a bad kind of hurt, it was wrong. I knew it was wrong but figured doctors would just tell me that’s how it feels to get un-fat. My physical therapists told me I needed to see a rheumatologist because they caught me unconsciously shaking my hands-my fingertips had taken to tingling and becoming numb. Upon closer inspection, my fingers were swollen like sausages; I told them it was probably just because I was fat. So I worked out harder. I started dislocating ribs by moving too fast, coughing, sneezing.

And then I woke up and could not walk. Excruciating pain. A friend came and took me to the emergency room and I was admitted. Despite testing negative for R factor (rheumatoid arthritis marker) and lupus markers, my joint inflammation was out of control. When the rheumatologist on call heard everything and then the bit about the rib dislocation, he brightened and said, “I know exactly what you have! Herpyderpy dofyperlifytis!” (Ankylosing spondylitis, but I wouldn’t really understand him until the second or third visit, it’s such a strange term.)  put me on some massive doses of steroids, and the next day I felt like I could dance, run, lift small Buicks over my head. Swelling down, inflammation down, pain down, down, down, down. Feelin’ good, feelin’ strong.

Prednisone. Magic.

Magic that made me want to eat everything in sight but also made me so exhausted that I felt like I needed a nap walking from the bedroom to the bathroom in a one bedroom apartment. I was easily irritated–or far more easily irritated than usual–and the mood swings were epic. I wanted off that ride, so the rheumdoc and I worked to taper me off, but at a certain level, even given other medications, the pain and inflammation and stiffness returned. Losing weight is extremely difficult because prednisone messes with your hormones and your appetite, and in the wrong direction. (I never get any of the side effects or illnesses that would help me get thinner, I’ve noticed.) (Not that I’m asking for anything new, please god.) Because of the problems prednisone causes, and my borderline blood pressure, and my borderline blood sugar, and and and, it’s a terrible idea for me to stay on it long term.

I’ve been on a daily dose of it for more than 7 years now.

Every year or so I decide to try to get off of it again, or a doctor wants me to at least reduce the daily dose…no dice. I tried over this summer, and given my pain levels now the same thing is happening. I made it to 7mg/day, but yesterday I couldn’t stop the tears once I got home, walked the dog, and could finally take off my shoes. I emailed my doctor. She has been down this road before. Dropping below 10mg a day, even doing a slow taper, just won’t allow me to function. So she’s taking me back up to 10mg, which is as low as I can go without losing much function. I still hurt, but it’s doable. A daily 3 or 4 on the pain scale, and those are normal good days for me. (For reference, my large head tattoo started at a 5 and after 5 hours of work it ended feeling like a 7 or 8. Much of this summer has been a 6. The past two weeks I’ve been flirting with 7, and yesterday and today were absolutely solid 7s. At 8 things start going terribly wrong, and I consider the emergency room.

Prednisone. For all of its problems, I have to say it works. My body is being destroyed anyway, the drug just destroys it in new and interesting ways, I guess. At least I can walk in the meantime, at least I can do the work I love in the meantime. A lot of folks are not that lucky.  Ah, prednisone, you bitch, I love you. You might max me out on the regular scale, but you have no idea how much I’m looking forward to hitting a 4 on that pain scale again.

Pain Management: Unicorn Doctors and the Low Dose Naltrexone Option

*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.