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Just Take Tylenol?!

“You should be able to manage your RA pain with over-the-counter medications, like Tylenol and ibuprofen” is what my pain management doctor told me during my last appointment with him a couple weeks ago.

My immediate reaction was, “WHAT?!” I was really surprised and baffled hearing him say this. Is he joking? Sadly, he was not joking, which immediately made me furious and deeply disappointed that once again a pain clinic provider was not listening, understanding, respecting me as a patient or believing my pain.

“Do you know how severe RA pain is?” I asked him incredulously.

“Yes, of course,” he replied in a huffy tone. “I’ve been seeing RA patients for 25 years.” I very badly wanted to say that if that were the case, I was willing to bet that over-the-counter meds did NOT help any of those chronic pain patients, just like they do nothing to relieve my pain. But I kept my mouth shut, mainly because he wielded the power of being able to sign his name on a refill prescription for my much-needed hydrocodone. He seemed strangely pissed-off already and I didn’t want to make things worse.

How can a doctor go from helpful to demoralizing?

Things had turned definitely worse, however. This monthly, follow-up appointment at the pain clinic proved to be extremely confusing, disappointing, maddening, frustrating, and demoralizing. Let’s add embarrassing and shameful to that list, too. For some reason unknown to me, my doctor’s attitude toward helping me had done a complete 180 from the last time I saw him. Why? What was going on?

Strange comments about my RA and chronic pain

The doctor went on to make additional strange and surprising comments about my RA, my new jaw pain, and my chronic pain in general. He instructed me to follow up with my rheumatologist about my pain. Again, I thought, “What?!” I already do a very good job staying in touch with my rheumatologist and adhering to my current RA treatment plan. I tried to say this to the doctor and to explain that I’m currently in a “limbo” of sorts, still waiting to see if the latest biologic medication (Simponi) I’m taking is working.

Unforseen complications with my current treatment

Something that has made this limbo last longer, through no fault of my own, is that I’ve had to miss many methotrexate and Simponi injections due to being sick and on antibiotics a lot during the past several months. Not surprising then, my RA is still not stable, nor am I able to taper down and off prednisone.

Why was I now being treated differently?

It felt like I was being treated like a criminal

But the doctor wouldn’t hear any of my explanations. Instead, he said some bizarre thing about how during my previous two appointments with him (I’ve only seen him three times), he was “being nice” to me by giving me pain medication. But now he’s not going to be “nice” anymore? He had obviously changed his attitude towards me, even though I didn’t do anything wrong. I sat there, dumbfounded and fuming on the inside. Great, another doctor treating me like a drug addict and a criminal.

Was I being accused of lying about my chronic pain?

Another thing that confused and upset me during this appointment was the doctor accusing me, in a weird passive-aggressive way, of lying to him about my jaw pain. And this, I suspect, was the cause for his change of demeanor.

He kept telling me that he had looked through my medical chart and read notes left by my former integrative medicine doctor (she left the primary care clinic recently) and told me in an accusatory tone that my jaw pain was not new or an acute thing, but that it had been going on for a long time. I tried to explain that yes, I’ve been suffering from my “normal” TMJ jaw and head pain for quite a while. But this much more painful lower left jaw pain was something new and had only begun at the end of November.

He wouldn’t listen.

The shame and anger of RA pain management

I sat there feeling extremely uncomfortable, with a mix of guilt, shame and anger washing over me–like a little kid being reprimanded for doing something bad. My heart sank as I realized that I could not go back to this doctor again and that I would probably have to deal with the stress and hassle of finding a new pain management clinic. It was exhausting just to think about it, especially since I had already done it once.

A revised pain management plan

Before I left the exam room, the doctor sternly told me that he was going to start weaning me off my pain medication at the next appointment by reducing the dosage by half. Then, at the appointment after that, I wouldn’t be given anything for my pain. This idea did not sit well with me at all, of course, because my pain has been significantly worse lately due to the jaw and head pain. My “normal” constant RA pain is already bad enough, but with this other stuff going on, my pain tolerance has sharply decreased. He finally and grudgingly gave me my last “regular” prescription and left the room.

Chronic pain patients should be listened to and believed

Then I left the room, thinking–This is NOT right. I should not be treated this way nor should any patient who struggles with RA or other kinds of pain. We shouldn’t be treated like bad little children, or drug addicts, or criminals. We should be listened to and believed, and I will continue to speak up about how chronic pain patients are being unfairly punished during this “opioid crisis.” I would argue that the real crisis going on right now is how chronic pain patients are being treated. Or maybe “mistreated,” I should say.

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

  • Cynthia Ventura moderator
    3 months ago

    Ugh! I have gone through the same thing. Not by my rheumy who still is able to manage my pain but by my health insurers drug management provider. And by supposed friends who called me a drug addict and worse when I had the temerity to complain about how chronic pain sufferers are punished because of drug abusers.

    My allotment has been cut and cut again, then again. My rheumy fights back but even after adding a pain med that is supposedly abuse resistant my milligrams are scrutinized and cut once more. Don’t notice that I’ve been on the same dosage of the same medication for over ten years. Don’t take into account I’ve never been caught double dipping or trying to refill too soon. None of that matters. I take pain medication therefore I must be an addict. That is the new equation. And when you speak up for yourself you are branded a troublemaker.

    I understand why you held your tongue but it makes me so angry! Why must we keep silent? Why are we disrespected? Why are unfeeling corporations dictating the needs of chronic pain sufferers? Because the voice of addiction is louder than the voice of chronic pain. Because unless you are a chronic pain sufferer you cannot understand the relentlessness of it.

    Most individuals look at pain as one dimensional. I stubbed my toe…ouch! I broke my arm, sprained my ankle. But eventually the pain went away. Their experience of pain has a beginning and an end. They cannot fathom waking up every morning in pain, if you could sleep at all after going to bed in pain. They do not understand the kind of pain that makes you wish you could escape your body just for a day, an hour. Chronic pain is multidimensional. It has many aspects, it affects people in greater ways than just sensation. It affects your mind, spirit and soul. It makes you feel less than a person without any help from the outside world.

    I’m so sorry you are up against this. I pray you find a compassionate and caring pain management provider. I pray we all be freed from the stress and anxiety of constantly proving that we deserve compassion and more than just adequate care. Till then I speak up. I stand beside you and every other chronic pain sufferer. Gentle hugs.

  • MrsT
    3 months ago

    Hi Angela,
    You did NOT deserve to be treated like that! I am sitting here crying because I’m so angry for you! These doctors just don’t understand the unrelenting, excruciating pain that we deal with every single day, year after year.

    I was told by my pain clinic doctor that he heard that “the pain from RA wasn’t that bad”. I was dumbstruck by his idiocy and couldn’t even say anything(til I got home of course). That’s the frustrating thing!

    We are at their mercy in a way, and can’t really speak our minds in case they kick us out of their care. I feel bad that you have to find yet another clinic, another doctor.

    I wish you the best and will say my prayers for you.
    Lisa

  • BeccaFloyd
    3 months ago

    I’m so sorry you were treated this way, Angela. As I read your telling of the experience, I felt my chest tighten ever so slightly. The reason being, dealing with pain management providers has been, BY FAR, the most stressful and anxiety inducing part of my struggle living with RA and chronic pain. Your experience with your pain doctor is all too familiar to past experiences of mine, and the hurdles I have had to overcome just to be taken seriously, listened to, and prescribed the medications that are necessary for my quality of life. In the past fifteen years, I have only had two pain management providers (my first provider retired). I have always adhered to my provider’s instructions and have never failed a required UA, administered at least every three months under their care. Regardless of my impeccable compliance and exhaustively documented need for these medications, there have been many occasions in which I’ve been made to feel like a drug seeker, or that I am exaggerating my pain. There are several providers under the umbrella of my current pain management clinic. Meeting with a new provider causes me awful anxiety, as in the past I’ve had terrible experiences where a new provider questions my current protocol, threatens to reduce or rescind my prescription, or requires new and substantial rules to adhere by. Although my rx has not changed in five years, my every four month visits were increased to every three months, than two, to now every. single. month, a considerable increase in expense of time and money, ostensibly to adhere to new government regulations. I understand that many providers hands are tied, but the “war” on opiates is making our lives, those of us who legitimately and responsibly take pain medications, more difficult and stressful by the day. I know all too well the frustration of having to bite your tongue, as you did Angela, as these providers hold all the power in continuing or ended our pain management care. It is a demoralizing, sickening, helpless feeling knowing that you have absolutely no control over whether or not you will be given the medications necessary to have any quality of like whatsoever. And that the difference between receiving these meds or not could depend on the mood of your provider that day?! I don’t know what the answer is, for making our pain management care as reliable as our other care (whether or not our rheumatology care is reliable is a whole other conversation), but the system as it stands is making the lives of people in need of pain management very precarious. The constantly shifting regulations around these drugs, and the fluctuating mentalities of one provider to another, make managing our pain care unreliable at best, and impossible at worst. We are a vulnerable population, and it is the responsibility of our health providers to listen to us, and verify through documentation and examination, when we say we need health care, including that of managing our pain. I truly hope you are able to find another pain management provider who will listen to you, believe you, and treat you with the respect you deserve. In fact, I hope that for all of us.

  • Cynthia Ventura moderator
    3 months ago

    Excellent post. Everything you shared is right on (I think I’m dating myself lol). But there is only truth in what you say. God bless you. We are stronger together than apart. Gentle hugs.

  • BeccaFloyd
    2 months ago

    Thank you, CynthiaV. What you said in your earlier comment to Angela really resonated with me. You said “I pray we all be freed from the stress and anxiety of constantly proving that we deserve compassion and more than just adequate care”. I don’t think many people on the outside looking in understand this part of living with chronic illness. It is incredibly demoralizing to contend with these constant micro aggressions (if not straight up disdain or disregard) from the professionals we entrust with our care. To be looked upon with suspicion, to have to steadfastly advocate for ourselves, facing and overcoming constant hurdles placed in front of us by our insurers, our providers, our pharmacists and sometimes even our loved ones… when we are at our most vulnerable and in need of that compassion you speak of, they are adding insult to literal injury.

  • RHPass
    3 months ago

    Angela-AMEN! From the moment I had to sign a contract ( yes really) outlining what could happen to me if my doc found out I got meds other than what she gave, I feel like i’m The criminal! I have used hydrocodone responsibly for 22 yrs of RA. It is THE only thing that helps outside of the hospital. I have been cut so drastically that now I deal with a scary level of anxiety attacks! My ‘shrink nurse’ says she’ll help with pain med problem, but I haven’t seen it . This month is ‘face the music’ month. The last guaranteed refill for me. Now it’s PRN only- as needed, and not every month. How do we find a way to swing this crazy pendulum BACK in favor of the patient?

  • justjoany
    3 months ago

    I have been on both sides of the prescription pad as retired nurse practitioner with severe RA, diagnosed 30 years ago. My pain leaves me in tears at times and interferes with sleep. I have taken a total of 10-20 mg of hydrocodone a day for most of that time. My dose only increased when I had a spinal fusion for lumbar scoliosis after my L4-5 disc ruptured. Thankfully my family practice doctor worked in the same clinic where I practiced. He saw me on the days when my pain was so bad I had to go home. He watched me limp down the hallway between exam rooms. He prescribes my medication. I have never LOST or had a prescription STOLEN in all of those years. My rheumatologist does not prescribe anything stronger than Tramadol which is like drinking tap water for me. A patient of mine who sees a different rheumatologist told her that if he had his way she would not be taking any controlled substances for her pain. He has NO IDEA.
    Before I retired last year at age 66, we were in a program with the state medical board, pharmacy board and nursing board which kept records of all controlled substance prescriptions we wrote and to whom. Being someone who had been in practice for 44 years I had more than my share(not in a bad way) of patients on pain medication just because of the length of time I practiced. The number of prescriptions I wrote were much higher than the usual NP in my area. I practiced in constant fear of the nursing board and DEA showing up and taking away my license to prescribe controlled substances. I was very careful about my prescribing practices staying within the recommended doses. I was still terrified. The pain management clinics prescribed much higher doses and larger quantities than I did. So, I tried to manage as many of my own patients who had chronic pain as I could, which included more than a few with RA, because I understood their pain.
    The take away: there has to be a better way of monitoring controlled substances and not putting those who prescribe in fear of losing their licenses and still being able to help our patients who do indeed suffer from chronic pain.

  • Mary Sophia Hawks moderator
    3 months ago

    Angela, I am so sorry you were treated this way! How demoralizing!
    One thing I learned in 33 years as an RN: No one can accurately perceive the pain of another. Again, no one can accurately perceive the pain of another.
    I am fortunate that my rheumatologist prescribes my pain medicine and that I only need it rarely.
    I am truly sorry you are struggling so. My prayers are with you.
    Blessings,
    Mary Sophia

  • Frazzled
    3 months ago

    I have been put on Tramadol and nothing stronger, despite the fact that I have constant pain in my feet, SI joints, knees, and hands. You’d think it would be easier to get some relief, but that would not be the case. When I was in MN, I was certified for Chronic Pain and was given a medical cannabis card. That worked, especially the stuff I could take during the day that was 1:1 CBD/THC. Now that I am in CO, it is harder for me to find the stuff I can take during the day and still work, but UI have a whole host of things in my arsenal for the night – heavy THC strains that knock my pain (and me) out. This is not for everyone, but it sure has helped me in some significant ways. I still wish it was easier to find the 1:1 stuff so I can take that during the day. One more thing to have to figure out and search for. The management of this disease, and all of its side effects (particularly pain) is incredibly difficult to deal with. Like you said, you feel like a criminal for asking for something you need. That tells me medicine has gotten way of course.

  • trishak913
    3 months ago

    Please, Angela, search for another pain management doctor who is empathic & really has knowledge about the chronic pain of RA/RD! Believe me, they are out there, I’m extremely grateful to have one. Please don’t give up!

  • mseelhoff
    3 months ago

    In south Texas, doctors will not write opioid prescriptions. Plan and simple do not even ask. Standard treatment Tylenol. Guess what now my liver will not tolerate anything. So yes I will probably at some point throw myself out in front of a moving vehicle. Guilty of negligence!

  • RHPass
    3 months ago

    I am on the verge of this same dilemma. After 22 yrs of RA/RD my liver is saying ‘enough!”. They wonder why the illegal drug use has risen in the over 50 age groups? I know why. Suicide isn’t an option!

  • mseelhoff
    3 months ago

    In south Texas, doctors will not write opaite prescriptions. Plan and simple do not even ask. Standard treatment Tylenol. Guess what now my liver will not tolerate anything. So yes I will probably at some point throw myself out in front of a moving vehicle. Guilty of negligence!

  • BeckyKay
    3 months ago

    Believe it or not, that’s the advise/directives being published for physicians. Reduce opioids by 50% first month then eliminate. When I see the newly available statistics on opioid use across the US, it is highly concentrated in a few areas, but spreading to a more general increase.

    The current approach is negatively impacting a lot of people who depend on mild opioids to make it through the days and nights of chronic pain.

    My pain clinic, rheumatologist and orthopedic physicians have all stopped prescribing. The interventional anesthesiologist (facet joint/back pain) will only prescribe 30 days of attenuated opioids. My primary care physician is now managing my pain meds. Probably because he can see what the pain does to my quality of life on a regular basis.

    I understand people are dying from opioids, but where is personal responsibility considered? I need to be able to manage my meds and pain.

  • RHPass
    3 months ago

    When the DEA was unable to control rampant opioid abuse nation-wide they turned on their ‘captive audience” of legit patients to ‘make their numbers’ work. Lucky us!

  • RHPass
    3 months ago

    Cynthia V. I had this said to me by a pharmacist that works with my doctor’s office. When I had to sign a legally binding contract regarding opioid meds I wanted answers…made me feel like a criminal! So demeaning.

  • Cynthia Ventura moderator
    3 months ago

    That is something I never considered. Thank you @RHPass for opening my eyes.

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