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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, January 31, 2014

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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  1. I find that going to my rheumatologist is a waste of time, spending more of that time in the waiting room than in the exam room. We've hit a wall with the treatment of my Fibro - lidocaine injections are fairly useless for me, there are no new drugs available (I try each new med once it's FDA approved including but, not limited to Lyrica, Savella, Elavil as well as the 2 that are effective and that I've been on since 2003 - Neurontin and Ultram). As is the case with most Fibro patients, my situation is complicated by other conditions including chronic intractable migraines, abdominal nerve damage and adhesions.

    You're 100% correct, they get paid quite well for certain treatments. I saw the EOB on the lidocaine injections - he charges $600 per injection and gets a decent % of that. That's absolutely ridiculous that he charges more per injection and volume of that injection than my neurologist gets for 31 injections of Botox (200 units) every 3 months. My GP is just as qualified for the treatment of my Fibromyalgia and is the doctor who first put me on Neurontin and Ultram - my rheum simply upped the dose of both of those meds.

    The only time the lidocaine was somewhat useful since perhaps the first year I began receiving them (2004) was last year when the Botox caused my upper trapezius muscles to spasm. Rather than go to the neurologist (2 hour drive), I went to the rheum to administer the lidocaine. I think it helped some - though the prescription muscle relaxer I took 2 times was probably MUCH more useful.

    It's frustrating that there are no treatments that help all Fibro patients. What seems to be the most common in the treatment of Fibromyalgia (most likely because it probably works the best as of now) is the combination of medications including anti-seizure, low dose anti-depressant (as that helps with pain), narcotics depending on the doctor and patient, low impact exercise, good nutrition (it's best to eliminate sugar because it causes widespread inflammation), and trying to have good sleep hygiene (whatever that means).

    I understand why doctors are frustrated. They can't cure us of the illness, they can't eliminate symptoms, and the medications are more effective than other treatments. I'm not one for conspiracy theories but, I'm sure that no pharmaceutical company is in a rush to cure Fibromyalgia; given the litany of prescriptions needed to mitigate some symptoms, it must be lucrative for the companies to churn out treatment drugs rather than curing drugs.

    Gotta go - the dogs are barking at each other and annoying me to no end. Joey will be in time out very shortly.

    1. With all due respect, I have to wonder about that rheumy you saw, Melissa! Lidocaine injections are NOT done on tender points and fibro, but rather but for myofascial pain & trigger points, a huge difference. It annoys me to no end that there are self-declared fibro specialists out there who don't have a clue and rip people off. And $600 per shot is absolutely insane. I've never heard of that kind of fee. Too many red flags here, M.
      Also, can't make an across-the-board statement that certain things work and others don't. Antidepressants? Total waste on some, for example. We are all so vastly different, which is part of the problem in dealing in fibro - and MECFS.
      I, too, am getting lots of help with the muscle relaxers at the moment. But I know that'll change. Everything always does. It's just a really weird illness.
      That poor Joey... I know he's trying! ;) xxx

    2. They were trigger point injections. When I used to go every few weeks, I'd receive at least 8 injections. Once in a while I'll go and that's usually 4 injections just for the worst of my spots (I have pain & tenderness at all Fibro spots. But, luckily the extreme nature of my nerve damage pain means that I only feel the worst Fibro spots - unless someone presses on the other points, then it feels like I have raw bruises there too). The lidocaine is also useful for the spasms that can be caused by Botox and because the spasms happen near 2 of the spots, they're especially painful.

      I found Elavil (I think it was 10mg, very low) to be very helpful for both Fibro pain management and sleep deprivation. But, I put on A LOT of weight the first month. It wasn't worth it at that point. The doctor also tried Wellbutrin (triggered my RLS in my back). I've gone the route of suppliments like 2000 IU of D3 per day, probiotics, 300mg of Coenzyme Q10, and 400mg of 5-HTP as well as hypnosis (not the quack like a duck fake stuff) and accupuncture. Meds work differently for different people, primarily due to our hormones and comorbid illnesses. I wouldn't be able to function at all without Neurontin with the Ultram handling some of the breakthrough pain.

  2. After 20 years of fibromyalgia and mystery health symptoms, and then a year of cascading, escalating bizarre symptoms, I learned that for some of us, it is possible to discover and uncover the causes, and recover.

    I've not seen a rheumatologist since diagnosis two decades ago, I got more help from occasional consults I paid for with an integrative physician. Then the wheels started to come off the bus a few years ago and I got second and third opinion consults with a dozen specialists. They were clueless and unhelpful. I went back to the integrative MD, and after about nine months, he figured it out after hearing a conference presentation on reactivity to dental materials.

    I added to my health care team a biologic dentist trained in biocompatible dentistry, who understands that both immune response and and skin allergic reactions to dental materials can trigger systemic inflammation and fuel a raft of chronic diseases, and continued with a functional medicine or integrative MD who understands how things work together in the body, how things fail together when you lose your health, and what additional lab and genomics tests (including and beyond those covered by health plans) can provide the keys to diagnosis, treatment and recovery.

    A number of us have genetic glitches in our detoxification, methylation, metabolic and immune system pathways that make us especially susceptible to systemic immune responses to toxins (heavy metals, chemicals and biotoxins from infectious agents), to neurological injury to our autonomic, central and peripheral nervous system, and to metabolic challenges.

    For me and my genes, removal of dental amalgam by a biologic dentist (high speed drilling which regular dentists do just increases your toxic load) replacement with biocompatible materials, and supportive treatment for recovery from mercury poisoning was key. Additional factors were mold toxicity diagnosis and treatment, chronic lyme and short-term treatment with a non-generic instead of generic Rx I'd had in the past, and hidden dental infections that were easy to clear.

    I know other people who have also recovered completely, and I know a few who have not. We expect their genetic glitches are more challenging, and will take longer to discover the appropriate treatments to compensate for them, and clear the toxins impeding their health.

    I am off Rx except for a compounded vitamin/mineral mix to compensate for my genetic glitches, have my energy and focus back, no pain or inflammation. It is great to have my life back again.

    To sign my petition for a Surgeon General Report on Dental Amalgam and Mercury Health Risks:

    To learn more about the role of genes and toxins in our health, share what we learn, and take action to help ourselves and others, join us at Hidden River Health Challenge: A Social Innovation Enterprise, www.oceanriver.org/hiddenriver.php (still in beta) and www.facebook.com/hiddenriver.

    1. Hi Laura!
      I'm really sorry you've gone through all this and I hear you. You have no idea what a huge can of worms this is in my family picture.

      I agree that dental problems are overlooked & I agree not enough is known about this connection. I even had all my mercury fillings removed back in the late 80's - and by someone who knew what he was doing.

      I've had chelation therapy & continue to have heavy metal poisoning. (I write about this - see search engine if curious.)

      Throughout, I've tried to combine "holistic" and "western medicine" - sometimes extremely successfully, other times not. There are good people out there as well as charlatans in all aspects of health care & one of my biggest "beliefs" is that one stays open to all, but cautious with all as well - there is crud out there in all areas. Been there, done that, as the T-shirt says.

      My GP wisely said, upon seeing the help I got holistically, "I don't care if they tell you to put cow manure on the top of your head...just do whatever they say because it's working!"

      Btw: the ancient doctor I saw who was into the holistic route was really against root canals. I thought that interesting bc my mom's health problems started with a root canal. I have one which is causing problems, other one just fine.

      I do think there is a dental component. However, the scary thing is finding someone who is real and not taking advantage of desperate people. My mom really messed herself up going to too many bad people out there who were recommended or had great credentials.

      And I do believe there is a genetic component: interesting that 3 of us in our family have HGH deficiency & need daily injections.

      Of course, this is all just my experience and just what I've observed. And this is all just the tip of the proverbial iceberg, very much Cliff Notes.

      Thanks so much for reading and for giving us your story and insight, Laura. Xxx

  3. Dear Babushka, (with accent on the first syllable!) Congratulations on your beautiful grandson. Baby Aiden is a sweetie. Very happy for your family and not surprised that you managed to soothe him over Skype. Another superpower to add to your collection, I think.

    Sorry you have bronchitis on top of trying to recover from your colonoscopy. Hope you may be feeling a tiny bit better now. I was reading through your blog and commented on a post from last year. I blame my brain lol!

    Apologies for not writing sooner. Have been thinking of you and reading your posts. Just too much rubbish going on here and can not comment in public.

    Take care, Alpa xx

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