This is part two of the discussion in my last post, "The Role of the Rheumy Treating CFS/ME, Fibro and Other Sundries." It started as an answer to a question by a reader who wanted to know why her rheumatologist won't treat her. She has ME/CFS and fibromyalgia and since she doesn't have a disease which is of an "inflammatory nature," a connective tissue disease like lupus or rheumatoid arthritis (RA), instead has fibromyalgia, he isn't going to continue treating her.
Rheumatologists differ, of course, in what "interests" them and what sort of patients they want to treat - that is, as to what their main interests are within their specialty. In many ways, diseases like lupus and RA are easier to understand and treat, especially since there are useful guidelines and objective markers to go by.
Now before anyone starts "yelling" at me, please hear what I'm saying. (Yes, I can hear the roar!)
I'm not in any way saying that lupus or RA are less dangerous, but that they are less frustrating for the doctor to treat. Lupus and RA are extremely dangerous and even fatal, make no mistake. I'm talking about access to a specialist so that fibro patients can be afforded the same opportunity and the same respect as other patients.
And on a personal note, let me make it clear that when my rheumy did his fellowship in rheumatology, his mentor was one of the most leading experts in the world in lupus, if not THE best. The university had even asked her to "charm" him into coming to that program. So, lupus people, please don't get mad at me! ;)
Basically, the reader was sent away from the rheumatologist who should have taken the time to treat her distressing and life-altering problems instead of kicking her to the curb.
So to get to the matter at hand as to why a rheumatologist wouldn't want to treat fibromyalgia?
There's a big old elephant in the rheumatology world which too many rheumatologists are trying to ignore. Why? Well, it's a bit complicated and it's a truth that I don't think many want to hear, much less discuss. Yes, I do realize that I've named this blog "laughing from my sickbed," and yet I end up writing about perhaps too many non-laughing issues, but I seriously think that there are certain topics which should be looked at realistically. Not gloom and doom. Simply realistically and honestly.
To give you an idea of how rheumatologists have become disillusioned with their creation, namely, the legitimization of the diagnosis of fibromyalgia as a distinct medical entity, I'd like to relate a story my rheumy told me ages ago. I checked with him again today for the details so I've got it "right from the horse's mouth," you might say.
At an annual meeting at the College of Rheumatology, over a decade ago, my rheumy, who regularly lectured and gave poster presentations, was standing in front of his poster in the exhibit area of the convention center. A well-respected colleague walked by and instead of greeting my rheumy, whom he had known for many years, with a jovial greeting, he pointed to the word, "fibromyalgia," in the title and exclaimed, "I HATE those patients!"
Taken aback, my rheumy asked, "How can you hate your patients?"
My rheumy had been on the committee, after all, which had spent three years establishing the criteria for fibromyalgia. He had pretty much gotten used to local doctors not believing in the concept of fibro. At a party, for example, a plastic surgeon who'd had a bit too much to drink asked him once, "So, just between you and me, do you really believe in this fi -fi- fi- oh you know, that sh*t? Or are you just trying to make a lot of money?"
But to hear this by a respected rheumatologist, at an annual meeting of the College of Rheumatology, was a shocker. This was especially shocking since my rheumy always felt that if he had to send a family member to see another rheumy, this man would have been him!
It then dawned on my rheumy to ask yet another question. He said, "If your fibromyalgia patients had all the time they needed to describe their problems to you and you could take all the time you needed to do a proper evaluation and treatment plan AND you were paid fairly for your time, would you still hate those patients?"
The doctor stepped back and thought about it for a moment. This was something he'd never considered before: that is, being fully reimbursed for his time. What a novel idea!
He then said, he would NOT hate "those" patients under the circumstances.
Thus, my rheumy pointed out to him, it wasn't the patients who were the problem. The problem was that the system which forced doctors to spend little time with their patients and a system which did not reimburse the doctor fairly for his time and expertise - THAT was at fault.
Is it any wonder that pain specialists often prefer to do procedures such as epidural steroid injections and facet blocks (which are reimbursed handsomely) rather than prescribe oral medication after a lengthy history and examination (cognitive skills that are reimbursed poorly)? In order to survive, doctors have to turn a profit. After all, they have expenses and they also need to put food on their table and keep the proverbial roof over their heads.
My rheumy went on to diplomatically tell me that fibro patients are considered undesirable by many doctors, including rheumatologists - an irony since fibro patients are now disliked for the very reason they used to be "liked": they were what the "thinking doctors" used to love, intellectual challenges. Actually, (and this is me speaking, not my rheumy) there is a well-known adage: the best doctors are internists and the smartest internists are rheumatologists. And internists think, whereas most other specialties all too often have a cookbook mentality.
When my rheumy was in training, the complicated and unusual patients were sought after because they were challenging and intellectually stimulating. Sadly, for many doctors this is no longer the case.
The third-party payer system punishes doctors who think outside the box, who follow hunches that often result in brilliant diagnoses, and who spend a lot of time with each patient, all because the reimbursement paradigm is heavily weighted towards procedures, as opposed to cognitive skills.
So, don't be surprised if your doctor takes on only one or two problems in your visit. He/she probably doesn't have the time to explore all of your problems during that encounter. That doesn't mean it's right to have such a small period of time with your doctor, but this is the reality if you expect your third-party payer to defray the cost of the visit.
What to do? I think we all know, but I'll repeat it in order to complete my thoughts:
- Because of the time factor, prepare for your visit by writing down specific problems which are the most urgent at the time, knowing that your doctor will probably have allotted only enough time to hit the highlights during your visit.
- Be as specific as possible and try not to go on tangents when discussing major issues that are of major concern. (That's rich: me advising you to not go on tangents!)
- If you stay focused, chances are you will get a lot more out of the visit and your doctor won't dread the follow-up visit.
You may notice that I've not included ME/CFS in this discussion. Why? Because the sad part of this narrative is that The American College of Rheumatology claimed ownership of fibromyalgia when they established the criteria of fibromyalgia in 1990. Now it seems that they want to distance themselves as far away as possible from fibromyalgia.
As for poor old ME/CFS? That's for another posting.
As always, I hope everyone's doing their very best - only better! Ciao and paka.
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