Right from the RA trenches

What happens when your pain from rheumatoid disease gets too big to handle? What can you do when your go-to tools, such as heat/ice; distraction; meditation; CBT; gentle exercise; various lotions and rubs; OTC analgesics like acetaminophen; and even taken-as-prescribed opioids all fail to relieve your pain?

You can call your rheumatologist for help, for one. What happens then? Do you get an immediate appointment? This is highly unlikely in today’s ultra-busy medical practices. Does your doctor talk to you on the phone, prescribe a higher dose of opioids, and call it in to your pharmacy? Also, unlikely. New opioid prescribing regulations require the patient to see their doctor face-to-face before taking a hand-written prescription, personally, to the pharmacy. Doctors can’t call them in anymore. If your usual dose is 90 mgs per day or more, your doctor may not increase the dosage anyway, given the 2016 CDC Guideline-inspired, DEA witch-hunt atmosphere hanging over opioid prescribing. Physicians are genuinely and understandably afraid for their practices and livelihoods.

So, your doctor may tell you she’s sorry, you’re just going to have to tough this awful flare out somehow. Or maybe she tells you that if your pain is that bad, you should go to the emergency department (ED) at your local hospital for treatment. Will she remember to tell them you’re coming, giving your complaint and your insurance claim some legitimacy? You can only hope.

You may have already decided to bypass trying to see your doctor. You feel the effort is useless and demoralizing. Or maybe you simply can’t bear waiting for two weeks for an appointment. Sure, your pain might be gone tomorrow—but then again, it might stay for days on end. You simply can’t predict the length or intensity of an RD flare.

Braving the ED

It's the only option left, unless you want to try scoring illicit (and possibly deadly) pills or heroin on the street. You don’t even know how to do that, right? You try to be optimistic. Maybe they’ll do something horrible but amazing, like inject the offending joint with steroids to instantly calm it down. Maybe they’ll offer you a super-strong, injection-only NSAID, like Toradol, that might banish the inflammation around the joint quickly enough to give you some temporary pain relief. Or maybe they’ll OK a two- or three-day supply of a higher dose of your usual opioid pain reliever, or of a different, perhaps more potent one. Anything to get you through the next few days of this awful flare.

Even being optimistic, you know the ED isn’t an ideal choice. You face agony, sitting in a crowded waiting room for hours and hour before a doctor can see you. This is because ED administrators and doctors generally don’t perceive chronic pain as an actual “emergency.” They deal with far too many people who fake pain for opiates to get “high” on themselves or to sell to others. Drug-seekers disgust most ED doctors. They waste time and resources, keep other, legitimately ill or emergency patients waiting, and rarely pay for the care. Frankly, you’re disgusted with drug-seekers, too. They make it nearly impossible for you to get proper relief for pain caused by an autoimmune disease—one you certainly didn’t ask for!—that places pain at the top of its list of symptoms.

So, off you go, swallowing your humiliation. When you check yourself into the ED, the receptionist doesn’t even disguise her suspicious eye-roll. She tells you to take a seat. After an hour or so, a triage nurse calls you in. You tell her what’s up with your RD and about this monster flare that’s got you nearly disabled with pain. You tell her your usual prescription opioid dosage isn’t touching it. She, too, gives you "The Look" and sends you back to chairs.

You do the ED wait. And wait. And wait some more.

Finally, you get to see a doctor. You explain, again, what's up and what you need. She’s skeptical. Although you wince and jerk and “protect” when she palpates or attempts to move the offending joint(s), she’s seen some truly amazing frauds in her day. She isn’t friendly. She doesn’t smile. She purposefully discarded her bedside manner when she came in to see you, even though she’d been just lovely to her previous patients. Your humiliation—and despair—deepens.

She orders an ice pack and (if you’re lucky) a Toradol shot while she checks your records (assuming they’re available to this hospital) and leaves. Another hour or so passes while you clamp the ice pack to your knee—again while trying not to writhe and groan with pain. Maybe, if you’re extra lucky, the Toradol helps some. Eventually the doctor returns.

If the NSAID did help, you thank her but mention that it’s temporary. In a few hours, your flare may return with a vengeance and you’ll have to do this all over again. You hold your breath, waiting for her answer.

And today, the heavens smile down on you. This angel of a doctor called your rheumatologist and verified that you have RD, and the two agreed that you can have a three-day supply of your usual opioid at a slightly higher dose. You try your best not to grab her hands and kiss them as she writes your new prescription.

Now all you have to do is drive, painfully, back across town to the pharmacy, where you'll wait around again while they fill it.

If they’ll fill it … but that’s another story.

Have you had an ED experience like this as you try to get your RD pain treated? I’d love to hear from you.

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