Rheumatoid Arthritis and pain management doctors…and WTF?

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Lumbar Spine Right X-Ray MarkerSo for those of you that don’t have time for a long post, this is the executive summary.  My new pain management doc is a dickhead.  The end  :).

So now the detail:

Last week I saw my new pain management specialist.  He’s the go to guy. He knows his stuff. So I was told.

I mentioned in this blog that he demanded that all his patients attend a pain management information session before even seeing him.  I wasn’t impressed then, because it meant sitting on an uncomfortable chair in a little room being lectured about things that any long standing chronic pain patient already knows all about, and has definately already tried. So that didn’t seem like a good start.  Condescending even.  But whatever. I did that. He came highly recommended.  So I gave him a chance.

I had to. I was desperate.

I need options because I can’t stay on prednisone. My eyes are flaring again, every morning. I don’t know why that happens on higher doses of prednisone, but the fact is, it does. That worries me.  So I have tapered back to 15mg.  Mega flares are starting up again. Couchlife is becoming the norm.

Bye-bye treadmill. It’s been nice spending a bit of time together. Prednisone has been a great enabler to keep our friendship alive, but now I fear we have to part again.  I’ll keep trying to jog until my ankles, knees and hips break, cos I do care about you that much…

So I need this guy.  His website talks about the different pain management strategies, including physiotherapy, rehabilitation exercise therapy, hydrotherapy, acupuncture, remedial massage / soft tissue therapy, pain counselling, a one day pain management workshop that he runs, and a mindfulness course that he runs.  He has an inclusive approach to pain management.  His clinic is a one stop shop for all of these services.  It’s an enlightened approach, but I feel he’s over complicating it.  It’s also far more geared to someone with an injury causing chronic pain than a systemic disease.

To get his help, you have to go through the steps.  The above is Step Two.

Step One was the aforementioned information session, which gave an overview of all the treatments offered.

I have done all of this.  Medical intervention is number three. I told him I want door number 3.  I don’t wish to see his pain management psychologist, I have an established and very effective relationship with my own psychologist.  I have done some physiotherapy. It’s expensive and largely ineffective.  I am seeing an exercise physiologist.   Even though I hate swimming, and water exercise in general, I’m going to try hydrotherapy.   Massage is expensive, and sometimes I am too tender to be massaged.  And it’s very temporary relief.  I have done mindfulness training.  I don’t need another course in mindfulness, pacing or positive thinking.

So I’m ready for number 3.  Medical interventions. He asked what I was interested in, because my treatment is my decision. I told him I’m interested in radio frequency ablation as an alternative to cortisone injections into joints.

He told me to back right up because he had to figure out where the problem lay. How did I know the pain is in my joints?

Erm…because it feels like it’s in my joints?  Because I have rheumatoid arthritis, a painful disease of the joints?

He asked how I could be sure that it was Rheumatoid Arthritis causing my pain.

Deep breath, chick. Deep breath.

It was such a long appointment, I don’t know how to write about it all.  I can sum up to say that he was overly analytical, and was taking the approach of asking leading questions, the rephrasing my answers, then re-asking the same question, all of which appeared to be an attempt to try and confuse me and/or get me to contradict myself.

While I agree that going back to square one, and taking a fresh look with a new doctor is often a great thing to do, this doctor was antagonistic. He treated me like a moron.  He questioned everything I had to say, and my impression was not that he was questioning me to understand me better, but he was questioning me to find flaws in my story.  So he could then fit me into the box he wanted to fit me into.

It was tedious.  I tried to be patient, and I was polite.  But he was arrogant and condescending.

Here are a few conversation snippets, as examples:

He asked what was causing my pain. I said severe arthritis.

 

Him: “What does severe mean to you?”

Me: “I mean severe pain.  And many joints affected.”

Him:  “How do you know your pain is severe?”

Me:  “Because it feels severe. It stops me from doing things.”

Him:  “What things”

Me:  “Everything.  Walking.  Housework.  Living life. Anything at all. It leaves me couch bound.”

Him:  “ Are you sure its pain that’s stopping you.”

Me: (gritted teeth) “Yes.”

He asked about my bloodwork.  Whenever I tell a doctor that my acute phase reactants are almost always normal, they immediately rule out inflammatory arthritis as the cause of my pain.

When they do this, I know they are uninformed.  But this guy was over the top.  He asked me about my pain.  Where it was. I said almost all my joints were affected, and they flared at various times. Sometimes ALL my joints flare at once and these are what I call full body mega flares, or knock down flares.  That’s when the pain is so bad that I can do nothing but lie down and wait for it to go away.

Him:  “So what do you do?”

Me: “I lie on the couch, mostly.”

Him: “Who takes care of you?”

Me:  “I do.”

He said “How can you take care of yourself when you just told me you’re completely confined to the couch.”

*sigh*

I said I have no choice.  I have no one to care for me.  My kids are old enough to get me a heatpack and make themselves a sandwich.  But I just do the essentials, and everything else has to wait.

Him:  “So it’s not really a knock down flare. You’re not really completely incapacitated.”

You can see the tone that he was going for.  Examining every syllable.  Re ordering my words to try and get a different meaning.  Contradicting me.  Trying to make me contradict myself.

Quite frankly this is the kind of thing that pisses me off very quickly.  But I retained my calm.

Plus I’m on prednisone. That means I don’t control my temper as well as usual.  I told him I am on prednisone, and he said yes, on high doses.  He said the doses I’ve been on will have already done some damage, and are dangerous.

I said “I know. That’s why I’m here. For better pain control. So that I can take less prednisone.”

So then he asked me about prednisone.  He asked me why I liked it.

I said because it decreases my pain.

He said “Are you sure?”.

Um..what???

He said prednisone works in many ways physiologically. I said I’m aware of that.  And I don’t much enjoy the mood swings that come along with prednisone.  But I do enjoy the extra energy.  It knocks the fatigue on the head very well, and yes, it lessens the pain.

He asked which pain. I said whichever joint is flaring.  He said how do you know it’s decreasing your pain.

I said because I feel less pain.

He said just because you feel less pain, that doesn’t mean prednisone is decreasing your pain.

WHA???  I got the shits at that point and said I can only tell you what I perceive.  When I am on prednisone I perceive less pain.  I have more energy.  I get a whole lot more done. Life is better. Life is closer to normal.  I wish I could stay on high doses forever.

(Apart from the fact that it lowers my tolerance to dickheads who want to antagonise me.)

I know that prednisone can be a mood elevator, and can give a rush of energy, like a ‘high’.  He was trying to find out if I was loving prednisone for that reason.

Just a tip.  If you ever want to know anything from me, just ask me directly. I’m not stupid. But I hate people trying to trip me up and analyse me, in round about ways.  It’s like everything he said was a loaded question, trying to trap me into saying something so he could tick a box for his favoured theory.

And he did NOT want to come to the conclusion that I have uncontrolled rheumatoid arthritis. He did NOT want to come to the conclusion that I have physical pain.

He asked about the joints that were affected. I said almost all of my joints are affected, at different times and different intensities.

So he concluded I had widespread, diffuse pain.  I know what that phrase means. It means he is trying to box me into fibromyalgia.

I disagreed. I do NOT have widespread pain. I have inflammatory arthritis affecting almost all of my joints. But it is targeted, intense pain. Not the widespread, diffuse pain that pain sensitising conditions and fibromyalgia pain is described as.

He said “That would be very unusual. To have that many joints affected”

The way he said ‘unusual’ was synonymous with ‘impossible’ and ‘I don’t believe you’.

He asked about my opioid use.  I told him I preferred MS Contin to Targin and have recently switched back to Ms Contin.  To have a break from all that oxycodone.  He asked why I preferred Ms Contin to Targin. I said Targin gives me a headache and makes me more drowsy.  He said. “I doubt that”

This is about where I was really starting to get irritated.

He doubts that.

I should have asked if he’d ever taken either drug. I’m betting he has taken neither.  He then questioned me on Norspan patches. I told him they didn’t agree with me at all. The side effects were horrendous. Even 5mg completely knocked me out.  Dizziness, nausea, completely non functional and sedated.

He said that was also impossible. Because 5mg per hour of Norspan is less than half the Ms Contin dose I am taking. AND I’m taking oxycodone on top of that.  And at that point he outright asked me if I was lying about how much Ms Contin and Oxynorm I take daily.

I calmly told him I was not lying. I was coming to him for help, so how would it benefit me to lie?  I don’t lie. Period.  I make mistakes, sure. I don’t lie.

And I don’t like to be called a liar.

I was about ready to go.  So he asked me why I like Oxynorm. I said I like the immediate response. I feel  better quickly.  I can use it to get through a task that needs to be done, and then it wears off. He said ‘what then?’  I said I either take the next scheduled dose, or I rest, use heat packs. Whatever. Depends what needs to be done.

He asked me if I was sure that Oxynorm decreased my pain. Oh great, here we go again. I knew what he was getting at.  Do I take it to lift my mood. Well, yes, yes I f****** do.

Doesn’t your mood improve if your pain decreases? I asked him.

He said yes, but oxycodone can provide a high, a rush. Did I like that?  He asked again.

I told him that I do. And I don’t like the constant doped effect of slow release oxycodone or morphine. I don’t like to be dumbed down.  Immediate release works for a few hours. And it works quite well.  I told him I was aware that I am taking more than most doctors would like, but I need that to function.  So again, I reiterated, that’s why I was here. To look at alternatives.

He asked me how I handle pain.

I told him very well, actually.  I don’t let pain stop me, unless it is severe.  There is an amount of pain that you can’t work through. And when I get there, and life starts to fall apart,  I do another prednisone burst.  And have a ‘pred holiday’.  A break.  A breather.  Some sanity.  And then I slowly taper down again.  And my life is one big repeat of that cycle, why I try various combinations of DMARDs and bDMARDs.

He said doesn’t that in itself get you down?  I said of course it does.  But I manage depression very well.

He said “You manage lots of difficult things very well.” In what I felt was a very sarcastic tone.

Temper flaring again, I said Yes, in fact I do!  I can be quite the arrogant little snit too…

He said “How do you know?”

OMG…I’m going to have to tune out or I may throw something at him.  How do I know??? Seriously!!!

People who talk in circles annoy the crap out of me.  He was trying to work me out, but he didn’t have any people skills.  I have been doing this pain thing for a long time. And I know myself very well. I’m happy to explain it to him.  But he didn’t listen, so I guess he’ll never know.

I interrupted him at that point and turned the conversation back to the radio ablation.

He said ‘Not so fast. First we need to be sure that the pain is coming from where you think it’s coming from’

I told him I’ve had cortisone shots into my facet joints, and SI joints, and they had provided good relief.

He said he would need to do some diagnostic injections himself, and decide for himself. He said he would give me a cortisone shot into my SI joint.  I said “Great, let’s do that”.  Finally, something that will give me some relief!

He took me to the x-ray room and then decided he would only inject anaesthetic.  And that he wouldn’t do my SI joint, he would do the lower facet joints.  But only one at a time.

I gave up.  Whatever.  Do what you want.

He turned the x-ray machine on.  He took a look.  I assume he saw the arthritis that my other scans have shown.  His attitude suddenly changed and he then said he’d changed his mind.  He would book me in for a series of cortisone shots, from my SI joint through my lumbar spine.

Guess he saw the physical proof and then just saw dollar signs.   So I agreed, and left.  As fast as my arthritic spine would allow.

But I won’t be going back.

5 COMMENTS

  1. I really can’t believe that you are having to pay someone to be such an arrogant, egotistical, disbelieving, ignorant on the diseases he should be well informed and versed in ‘specialist’. You have been to every apt, every specialist you’ve been required to go to, at your expense no doubt, and yet you still come up against people who think you’re lying, taking meds to get high when all you want is some relief from the constant, non relenting pain and relief so that you can have some quality of life and raise your kids, and reading this just makes me furious for you. I’ve a good friend who also had a similar experience with a so called pain management person. I don’t blame you for not going back to him, why would you put yourself through more of the same crap & have to pay for the privilege.

    • Yeah, I didn’t mention that he actually charged $529.00 for that appointment. I was only out of pocket $510. But that’s another appalling aspect. That he could dare charge that much! And for no help at all.

  2. I agree totally with Gillian! You held your temper better than I would have. The one thing I hate more than anything else is when people are condescending, because I am a lot of things, but stupid is not one of them. Just because we didn’t go to medical school doesn’t give these assholes w/God complexes the right to treat us like we are all a bunch of drug addicts looking for a high. While I am sure that happens, some of us actually need some pain relief. I’m pretty sure I would have told this Dr. Dumbass to piss up a rope! I’m sorry for the language, but sometimes people are just plain ignorant. I hope you can find someone who can help you. Nobody deserves this. This life. This treatment. This pain. But you are a survivor and you will do what you do: survive. Kudos to you for not a) killing him and b) having the courage to go on. I hope you smiled while reading this, because if you did, at least that’s something. I appreciate things that make me smile….good luck friend.

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