Friday Tidbits: The Real Reason Rheumys May Not Want to Treat You

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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Betrayed!

One of the best days of my life was reviewing my SPECT brain scan and seeing tangible evidence of all the damage in my left brain.

I'm not a conspiracy theorist, but if one looks at the story of CFIDS and/or fibromyalgia, one can't help thinking, "we" who are afflicted with CFIDS/ME/CFS and/or fibromyalgia were "doomed," for whatever reasons, right from the start.

It seems that NOTHING has gone right in the past almost 40 years.  Excuse me for repeating myself just a tiny bit from what I wrote in my "P*ssed Off" post, but to put us all on the same page, here are just two points I made: the few funds we fought so hard for from the NIH, were misappropriated by other agencies and really, no one cried "foul," much less was anyone taken to court for criminal activity.  When the doctors at Incline Village, Nevada could finally talk the CDC into sending a "team" to investigate the outbreak of this new disease - in a cluster - the "team" had the gall to spend its time skiing and sampling the restaurants instead, with the "team" arriving in Atlanta and declaring there was no outbreak in Incline Village.  And so it went....

It's now decades later and a third generation is becoming ill with this truly monstrous,  hideously cruel, though highly invisible, disease.  And what's happening?

Well, what's always happened, but for a few glorious years in the late '80's and '90's, is that we are being thrown back into the psychiatric wastebasket.  What???  It's the 21st century and we’re doing what?  Going back to 1970's standards?

• A couple of points first:  There are markers that can be found that prove CFIDS/ME/CFS and fibro exist.  The elevated protein in my spinal fluid is just one example, and it was seen in 1984 and 1988!  Yet are these biomarkers being used in anything that can help the CFIDS, etc, patient?   Not much.  Ampligen, around since the 1970's is still trying to get off the ground and avoid bankruptcy.  Funny, Viagra never had this problem.  Heck, Viagra was the first drug (or thereabouts) to be fast-tracked.  Those congressmen and senators wanted their...well,  you know what THEY wanted!  And they GOT it, as I'm sure everyone's aware, given all of us have gotten a spam or two trying to sell us the product, for male OR female, since we started exploring with the most primitive of computers and the Internet.
• Furthermore, just as another example - albeit a very stunning and almost unbelievable example - until the 1960's, rheumatoid arthritis, a disease NO ONE today would dispute as being a terrible physical affliction, was thought to have its origins in mental illness.  And yet man was almost to the moon when this disease was still marginalized and worse.  The term, "Rheumatoid personality" was used quite extensively until blood tests like Rheumatoid factor became commonplace.  Mental institutions a hundred years ago were filled with patients who had such physical problems as lupus and thyroid disease, to name a few.  It wasn't until objective blood testing revealed the true cause of the patients' problems and effective treatment could be sought after and implemented that the psychological wastebasket treatment was thrown out.  See a parallel with the mess we're dealing with here???

This sort of thinking is not just insulting but it's downright dangerous as well. There are consequences that will and are being paid because of this lackadaisical attitude.  Some entity, a government, a bunch of people, some sort of institute doesn't like a certain illness, well, then just throw it into a psychological wastebasket.  I think Hitler had that problem to some degree, no?   But it gets worse.  Here are some bullet points for you!

• Throwing CFIDS into the psychological/psychiatric category causes people not to be inspired to look for the real causes or co-morbidities.  The proof is in the pudding, folks.  We're no further now in 2012 than we were back in the 1970's, really, or for all practical purposes.
• Betrayal by the American College of Rheumatology.   Now there really needs to be no touching of the patient: overlap of CFIDS & fibro, both diagnosed clinically, that have, for all practical purposes, no lab test or x-ray that leads to diagnosis are in for a lot of trouble.  Oh, some tests are available, but the testing is incredibly difficult to obtain and no insurance company is going to OK the costs.  The scarier part, to me at least, is that the American College of Rheumatology (once a great champion of fibro and CFIDS) proposed a new set of fibro criteria in 2010 which was based on the patient's history, a questionnaire which would yield a Widespread Pain Index (WPI) and a Symptom Severity Scale Score.  If the WPI reveals pain in at least a certain number of body parts and the symptoms of fatigue, cognitive problems and unrefreshing sleep are sufficiently severe then one is labeled as having fibro.  Imagine this, in contrast to the 1990 fibro criteria, where a minimum number of tender points had to be present.  Now the doctor doesn't need to touch you at all!  Furthermore, the dolorimeter, an easy, practical, HARMLESS and inexpensive test, which was used to measure pain threshold is basically gone, as is the Brain SPECT scan, which shows abnormal blood flow in the brains of fibro and CFIDS sufferers.  Yet the"useless," "harmful" and money-making (money-wasting) tilt table test is still out there, almost a relic of the Spanish Inquisition, and  persists. (Getting rid of the tilt table test is like trying to kill off Rasputin!)
• With no touching of the patient, only a questionnaire, how accurate are the criteria?  They become completely subjective and hardly objective at all.  This only gives ammunition to those who say that CFIDS and fibro are not real illnesses or that they are psychological.

Along with no - or only a cursury - physical examination, other potentially serious illnesses would likely be missed (as is already happening, me being Speciman A!):

• The sad thing is that medicine in general is become more and more depersonalized with an over-reliance on testing, and a minimum of physical contact between the doctor and patient.  When the doctor would check for fibro tender points, he would often find evidence of such co-morbidities as myofascial pain syndrome, arthritis, thyroid disease, growth hormone deficiency, to name a few.  It seems as if the newer criteria are for the convenience of the doctor, not for the benefit of the patient.  It's bad enough that fibro and CFIDS patients are labeled as being depressed or suffer from anxiety, but if this trend continues, even those docs whose hearts are in the right place will rely more and more on questionnaires and less and less on physical findings.
• This psychological wastebasket is also dangerous since once patients are labeled as mentally ill, all symptoms are viewed through that prism and physical pathology all too often goes undiscovered. It is important to note that fibro and CFIDS patients score very differently on standardized pyscholological tests than do patients with depression.  For example, the depressed patient will not attempt a task or activity, underestimating his ability to perform it, whereas the patient with CFIDS or fibro truly believes that he can accomplish a given task only to collapse when the flare of the disease knocks him down or out.  Yet that very patient believes that in the future he can attempt the task and succeed.  No two types of patients could be more different, yet the medical establishment stresses the psychological and downplays the physical.  When a rheumatologist is asked to use a questionnaire instead of a physical exam to diagnose a physical ailment, something is very wrong - after all, don't psychiatrists behave this way, never touching the patient?
• Why is it that medications such as anti-inflammatories, anlagysics, and quinine are taken off the market for problems which cause side effects in relatively rare instances?  However, medications such as Lyrica and Lunesta, which are still on the market and are so dangerous that they are required to disclose mind-blowing side-effects on their TV commercials - which not only include suicidal ideation, but suicidal actions - are still being sold like pancakes at Octoberfest?  Why is it that we are so "persecuted," since I cannot think of another word to use?

As I wrote in an earlier post, Stalin, in his great sanity (not!) decided to punish the "rich," "peasant" class, the most productive class in Russia and the Ukraine, called them "kulaks" and took all their land, food and shelter away from them, then shipping them to Siberia in cattle cars.  This occurred in the famine he induced, on purpose, in order to kill at least 10 million Ukrainians in just one winter, 1932-33.  These two countries, Russia and the Ukraine, are still feeling the repercussions of having lost so much talent, 80 years ago.

Somehow I feel as if this country - plus a few others; we are not alone in this criminal behavior - in the land of the free and the brave, is treating each of us as "kulaks" also, again.  The vast majority of us with CFIDS/ME/CFS and fibromyalgia were all highly productive citizens at one time, contributing to taxes, the economy, the work force, but many are now trying to get by on meager government funding, which is barely enough to stay alive. Think of how much good to society we are wasting when we allow such a highly-motivated and skilled population to rot away. Yep, we're like the kulaks. The only difference is that we're just dying at a somewhat slower pace.

We paid our taxes, we trusted our government, as well as the medical system, and we've been betrayed in the worst possible way.

What can be done about our situations?  I'm not really sure, but here are just a few thoughts:

•  I know that celebrities have often changed the course of illnesses or causes.  AIDS' "perfect storm" was when Rock Hudson, the beloved movie star, contracted AIDS.  The country softened its views about AIDS.  To further away the stigma, then Elizabeth Taylor, Princess Diana (under great criticism), Elton John and young Ryan White, who was helped by Elton John, were able to stir the conscience of this country's attitude toward AIDS and funding - and to make it not feared like leprosy - an analogy which I've always found to be repulsive since why should leprosy be stigmatized?  Actually, it took a lot more pieces for that "perfect storm," but these were the ones that put AIDS on the map and made it no longer the fatal disease it was in its first years, if medication is taken properly.  Yes, it's expensive, but then so too is my Human Growth Hormone alone, not to mention the 25 plus meds that I'm on, give or take a few, depending on which year it happens to be.
• Mothers Against Drunk Driving (MADD) worked because Candice Lightner, the mother of a girl tragically killed by a drunk driver, knocked on every congressman and senator's door, repeatedly, befriending staff with coffee and donuts until she found someone who might be able to help.  It was a tough job but look what it led to!  (And yes, there are political problems, but again, look at the results!)
• Breast Cancer awareness began at a grassroots level.  Parkinson's entered the mainstream with Michael J. Fox, and his dogged determination.
• Autism became big when upper-class parents united.

But CFIDS and fibro?  We need to find our celebrities, our dogged pursuers, the ganging together by healthy people who are on our side and start a huge funding project for our cause.  How this will happen when the American College of Rheumatology has given up on us as well, I'm not sure.  I know it's not going to happen for a while.  But happen it must.

Our country can't afford to keep losing its greatest resources, its best and its brightest.

As always, I hope everyone is feeling their best, only better.  Ciao and paka!


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