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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • CjGrits
    1 year ago

    Wren, thank you for your story about the monster flare and the ED trip. I have never even thought about going there. You really hit the nail on the head, we don’t know what to do when the pain gets unbearable. I agree with everything you said! It is so hard to get in to the RA Doctor. Sometimes our labs just don’t reflect how we are feeling, but I feel that is all my RA Doc looks at..I have had RA for 13yrs and feel like I have been in a flare since March..I have an appt tomorrow and hope to get some answers, Again thank you for your story.

  • amybeth
    1 year ago

    I’m having a monster flare up today. I feel like the bones near my knees and elbows are broken (I’ve had X-rays and they’re not!). My Rheumatologist doesn’t prescribe pain medicine, so I have to go through my primary doc. I take Tramadol, but it doesn’t touch this level of pain. My pdoc says I will have to go to a pain clinic if I need opioids. Have any of you had to do that? I’m feeling awfully down in the dumps right now

  • amybeth
    1 year ago

    Thanks for commenting Richard. Those articles are helpful. I’ve been digging into my grab bag of relief options! My doc had me start steroids again, which have helped. I was so happy to be off of them for more than six months! I’m going to try the pain clinic because my knees are limiting my ability to work.

  • Richard Faust moderator
    1 year ago

    So sorry to hear that you are struggling amybeth. One of our contributors wrote a couple of articles on pain management that may be of use:

    https://rheumatoidarthritis.net/living/pain-management/
    https://rheumatoidarthritis.net/living/do-pain-clinics-really-help/.

    Hopefully some of the community members will be able to chime in with some experiences. Know that you are always welcome here for information and support. Best, Richard (RheumatoidArthritis.net Team)

  • Lawrence 'rick' Phillips
    1 year ago

    Wren, mine was with the lupus like reaction. The attending would not call my doctor, I begged him. He put me in the hospital and fed me antibiotics. He was treating flu for 5 hours until the Rheumatologist showed up and started IV steroids. The RA doctor was almost overruled by the in house doctor so they decided to proceed with high doses of antibiotics and steroids.

    Well you can imagine which treatment did not work. I am thankful that my doctor was in town. If not I would have likely been expired. I hate being expired.

  • 2mra
    1 year ago

    Since my meds don’t usually work well for pain and they cause my immune system to
    be lacking, I unwillingly wait for the next infection to cause horrific pain and an ED visit. I live on the edge! 😀

    Last year, I tried Xeljanx which worked for 3 months and then I ended up in the ER with Pneumonia, unbearable RA pain, fever and Sepsis. Last month, kidney infection, fever/chills, extreme RA pain and Sepsis, so another rush to the ED. I obviously didn’t have to wait long and they were very kind during the week I was there and they treated me appropriately with antibiotics, IV steroids, other medications including stronger dose pain killers and monitoring me often. Those are the only times that I considered the ED for RA pain relief.

    When I’m having dreadful day(s), I sit on the couch wiping away tears, sometimes with fleeting thoughts of suicide, like many other RA/RD sufferers do, while trying to make myself comfortable. That is quite difficult when I can barely move due to pain. On occasion, I’ll pick up the phone next to me and call my Rheumy for help. He’ll squeeze me in that day, when my Hubby is able to take off from work to drive me over. My Rheumy gives me a shot or a new prescription or sends me for tests for a possibly new problem. I’m very blessed to have my two main men.

    There was one time that we were on vacation 8 hours from our home. I got these awful pains in my legs again from my new treatment of Rituxan. It had already bothered me for the week before. My Rheumy gave me a steroid shot and higher dose pain killers and NSAID, so that we could make the trip.

    Anyways, I ended up in the ED in that city, with my list of meds and conditions but my Rheumy was unavailable to this Doc since it was a Sunday. Yup! The Doc definitely thought I was there seeking drugs. I told her that I was on enough drugs, I just wanted her to do something else to get rid of the pain which surprised her. She told the Nurse to get me a heated blanket and warming pads(since I can’t stand ice or cold on my joints) and she also massaged my legs. They did other things but I don’t recall off hand what it was. Eventually, the pains left for that time. So I was happy. Granted that was not RA pain but from the Rituxan. I felt the difference. They are associated though.

    I’m glad that you found an angel that day, Wren.

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