The End of an Era in Fibromyalgia

The End of an Era in Fibromyalgia

There are two important messages that can be drawn from a new survey of fibromyalgia sufferers by the National Pain Foundation and National Pain Report:

1) Medical marijuana is vastly preferable to Lyrica, Cymbalta, and Savella — the three drugs approved by the Food and Drug Administration for the treatment of fibromyalgia.

2) Many patients diagnosed with fibromyalgia have become dissatisfied with their medical advisors.

How did this unusual state of affairs come to pass?

Doctor And PatientIt seems to me that we are witnessing the end of an era in medical history that commenced in the mid-1980s when North American rheumatologists began to apply their clinical acumen to shed new light on a mystery that had defied the best efforts of their forebears to solve it.

I am referring to the condition they named Fibromyalgia Syndrome (FMS), which had over many years been variously known as Fibrositis, Soft-tissue Rheumatism, Muscular Rheumatism, and Neurasthenia.

Their initial interest was sparked by an observation that many patients with hitherto undiagnosable widespread pain were more “tender” than expected in regions of their body that did not necessarily bear any relation to where they reported feeling pain. By a strange process of logic, it was argued that this finding showed that they were not imagining their condition or faking it.

In 1990 the American College of Rheumatology (ACR) announced new classification criteria for FMS that hinged upon the presence of both widespread pain and tenderness at 11 or more “tender points” arbitrarily chosen in 18 regions of the body.  Although these criteria were meant to facilitate research, they were soon being used for clinical diagnosis.

Along with these criteria were a number of allegedly “typical” symptoms, including fatigue, sleep disturbance, cognitive deficits, bowel and bladder dysfunction, and mood changes. When the tender point count was less than 11, the presence of these symptoms allowed a diagnosis of FM to be made. However, most rheumatologists failed to appreciate that these features are similar to those of stress/sickness responses observed in animals.

Armed with an official rheumatological diagnosis, FMS spread around the globe and North American sufferers banded together to form support groups that successfully lobbied the U.S. Congress for research funding.

Thousands of research papers provided an avalanche of data, but unfortunately a credible hypothesis did not emerge nor was a causative agent or mechanism identified. Little wonder then that the prescribed medical treatment for fibromyalgia proved to be so ineffective.

Some 20 years after the publication of the classification criteria, the ACR decided to remove the tender point count as a criterion for diagnosis and replaced it with a series of questionnaires well designed to measure the extent of “polysymptomatic distress” experienced by sufferers. It appeared that many rheumatologists had been so sure of their ability to make the diagnosis that they did not bother to perform a tender point count.

Gradually a realization of their relative therapeutic impotence dawned upon rheumatologists, many of whom removed themselves from an unsatisfactory situation that was of their own making.

The responsibility for management of patients with FM was passed back to primary health care practitioners, who were equally baffled by the complexity and intractability of this condition.

A large number of sufferers, together with their many support groups, have been left high and dry by those academic researchers who initially enlisted their lobbying support to secure research funding.

This leaves us with a number of questions to answer. Did rheumatologists ignore the important clues that suggested a plausible biological explanation for FMS?

Were they looking in the wrong place for answers? Will FMS now disappear from the lexicon of medicine, as did the previous labels? What will replace it? Will another medical speciality express interest in the condition?

And will medical marijuana become the drug of choice in the pharmacological management of people with widespread pain?

Some blasts from the past about marijuana:

Cannabis is an anti-spasmodic, anaesthetic, narcotic, and a powerful aphrodisiac. In large doses it produces mental exaltation, intoxication, and a sensation of double-consciousness. It is a valuable hypnotic in delirium tremens, and useful for painful affections of the bladder and for functional impotence. It is also used for nervous headaches. From: George M Gould and Walter Pyle. A Cyclopedia of Practical Medicine and Surgery. Philadelphia: P Blakinson’s son and Company, 1900.

It has been estimated that that it is habitually used for its intoxicating effects by from two to three hundred millions of the human race, and there is evidence to show that, when indulged in for a length of time, it produces loss of appetite and strength, and considerable mental weakness. From: The Family Physician. London: Cassell & Company, Limited, 1884: 813.

Dr. John Quintner

Dr. John Quintner

John Quintner, MD, is a rheumatologist and pain medicine specialist in Australia who recently retired from clinical practice.

He has published numerous articles on chronic pain in Pain Medicine, Clinical Journal of Pain, The Lancet and other medical journals.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

There are 24 comments for this article
  1. Amber Rose Dullea at 10:40 am

    Veronica, I understand that getting a diagnosis by itself is not empowerment. It does depend on what happens afterward. Does it give you understanding to what is happening and places to go for treatment? Do doctors have ways of helping and are they not saying it is all in our heads?
    For me, I was diagnosed with post traumatic Fibromyalgia after a car accident months after I “should” have been better. I understand not being able to work and giving up my massage practice.
    Still, I believe that there are things that can be done to increase quality of life and interrupt the pain cycle. I also know that we don’t understand pain very well. Even if it is found in a lab test, it doesn’t tell us what the person who is experiencing it is going through.

  2. Stephen S. Rodrigues, MD at 7:05 am

    I have an atlas and textbook on surgery, that does not make me a surgeon. Having read all of my authors does not make one a pain practitioner. Practicing with a broad array of therapies makes the master.

    An academic uses words and numbers to come up with theories. A practitioner talks and touches patients to formulate conclusions in real time. If a standard treatment fails, then the practitioner has to think out of the books or box to fashion a personalized care plan. NONE of these personalized care plans come from one or two books but come from the vast wealth of experiences from the most respected healers known, from Hippocrates to Travell.

    Pain is a phantom we can not accurately define. The only way to treat pain is with what created us in the first place. My authors used a few tools to discover similar procedures to treat pain. These tools obey the laws of nature to assist the innate healing. These treatment plans need to be implemented because they are curative and studied to get at the true mechanism of action.

    The only way they will be implemented is if we make these requests from our lawmakers!!

  3. dave at 6:26 am

    @BlackBerry my ling boa bills fantasies and 9 functions of my middle prefrontal cortex are well methylation. Since I had fibromyalgia for 4 years and have never suggested it is a neurotic condition I find it remarkable how you claim that I have. Since no one knows the whole story about any illness you and others are just giving opinions. I prefer to focus on learning more than giving an opinion. But when it comes to fibromyalgia your opinion is just one of many.

  4. John Quintner, Physician in Pain Medicine at 8:19 pm

    Veronica, I agree with you. In my opinion those beating the Fibromyalgia drum have led you and others like you “up the garden path” of biomedical reductionism. You bear witness to having under taken this unhappy journey.

    What comes next?

    My hope is that research into the regulation of evolutionarily-conserved stress response systems and what can go wrong with them will prove to be fruitful.

    If and when we understand the mechanisms of epigenetic influences upon the genes that can switch these responses on and off, we may be able to come up with scientifically rational strategies to reverse the situation in which you find yourself.

  5. John Quintner, Physician in Pain Medicine at 8:05 pm

    @ Dr Rodrigues. In my opinion, yours is but a pious hope. Having studied these very same texts, I long ago concluded that the theories and practices of these various past icons whom you praise have long since passed their use-by date.

  6. Veronica Clark at 5:23 pm

    ‘Giving a name’ to an illness is not empowerment. I got put through more pain clinics, physical therapy (which made everything MUCH worse), acupuncture, pain meds (to which I never get complete relief, nor ever get that ‘high’ from them), even psychiatrists, because I was told it was in my head, or that I just couldn’t handle pain. That name, to me, was an excuse. An excuse doctors drummed up, because they haven’t a clue what is truly wrong, or they simply just don’t care or want to take the time and effort to figure it out. I miss working. I absolutely hate being home day after day. I’m a people person, or should I say, I used to be. Now, I just sit and wonder ‘why?’.

  7. Stephen S. Rodrigues, MD at 4:39 pm

    @blackbelt
    I think what we will find in the future is what we already have known. All of my hope and ideas have been gathered for a bunch of old, some stinky and moldy, texts written a half century ago. Those doctors were gritty, gutsy, hands on and free to try what they knew to be safe to find effective therapies. It’s almost like time stopped in 1999 for research into the “why” patients have chronic pain and dysfunction to “how” to expedite treatment with a pill or surgery.

    We will find out that the “old school concepts and treatments” were and still are the best.

  8. BlackBelt w/Fibro at 10:54 am

    Thank you Amber for bringing focus back to this discussion. Both Quinter and Dave attempt to flag fibromyalgia as neurosis which is their shame.

    I agree on this: We are in a new era – an era of extraordinary diagnostic testing within which there are now at least two blood tests that confirm the diagnosis of fibromyalgia. It is simply a matter of time before one of them becomes standard protocol saving fibromyalgia patients from unnecessary surgeries and more. Here is a good video about one of the tests: http://www.king5.com/health/First-blood-test-for-fibromyalgia-developed-232946101.html

    Once one of these blood tests is approved, it will change EVERYthing. It will change how fibromyalgia will be diagnosed. It will change which physicians will care for fibromyalgia patients. Research dollars will be redirected. There are many physicians who don’t want this to happen – because yes – it will be a new era for THEM as they will be forced to redefine their own areas of specialty.

    Pay close attention to their unkind arguments cloaked in jargon and civility. They are pointing their fingers at the patient – this is their fear. This is their shame.

  9. Amber Rose Dullea at 10:07 pm

    I am a someone who has lived with fibromyalgia and who works with people who live with chronic pain. Patient empowerment is one of the most important things that we can do. No matter “who” is the primary health care provider, the person who lives with Fibromyalgia or any chronic pain condition needs solutions for everyday and ways to increase their quality of life.
    I am a health coach that specializes with people who live with chronic pain. Finding treatment that works for them and learning to communicate and work the system is also essential. Having a name for the condition can be very empowering. Having health care practitioners that listen and believe their pain is also essential; whatever the cause.
    There are so many opinions and theories that can add to the confusion that patients deal with everyday. In my practice, I realize that research is essential but that it comes down to individuals and what works for them to gain quality of life.

  10. Steve M at 9:39 pm

    Dr. Rodriguez is right, we need doctors to listen to patients, not lab tests

    Patients are are more accurate than immunoassays, GC/MS, and any other laboratory test

  11. Stephen S. Rodrigues, MD at 6:41 am

    “biomedical model has yet to produce a single reliable wet diagnostic/prognostic biomarker for any painful condition.”

    We actually do have a “real-time marker” that is not a “biomarker.” We have used it for millennia and that is “How can I help you and where is your that pain you’ve had all these month?” “Let me examine you.” “I now understand what you mean when you say pain.”

    The definition of pain is uniquely personal and should not be deduced with no other means.

  12. Dave at 6:28 pm

    John- I have to agree with you, it would be odd to expect medicine to be humanistic in the U.S. given our attachment to Capitalism and technology. Perhaps we are getting the type of pain care we have earned through our misplaced values and cultural foolishness. We have placed the wrong bets when it comes to pain care-and our paying the price for our mistakes.
    For a small minority of people-those who wish to be more free perhaps social media, has, in my estimation, been more than symbolic. Nonetheless, I agree with you it hasn’t lead to much in the way of resource redistribution or direct change on the practice of medicine in the U.S.
    Politicians in the U.S. find it so convenient and perhaps comforting to defer to special interest groups in pain care-rather than break their heads open to create the symbols of a new day.
    As to the mantra of evidenced based medicine in the U.S- “I smile and grin at the changes all around”- as the WHO song goes.
    Frankly, in the U.S. pain care and medical research is lost- fibromyalgia research is a reflection of how lost and incoherent medical research is in the U.S. The biomedical models failures are becoming increasingly more evident to even their most passionate proponents in the U.S.-nonetheless neurotics dont like to stop being neurotic- they just want to be better at being neurotic- so the pain specialists will ignore the fact that the biomedical model has yet to produce a single reliable wet diagnostic/prognostic biomarker for any painful condition.
    For me, Im forever drawn forth to new shores- so put another shrimp on the Barbie for me mate!

  13. John Quintner, Physician in Pain Medicine at 3:21 pm

    Dave, when society as a whole is focussed upon “capitalism and technology” why should Medicine be culturally different?

    Social media can provide checks and balances in health care systems but ultimately it is the politicians who have the power to effect significant changes.

    Whether your “Obamacare” will be able to deliver better outcomes for those with chronic widespread pain (Fibromyalgia) seems unclear.

    Providing evidence-based care is the new mantra for health care systems but putting such care into place will be no mean task. And particularly so when having to impose it upon a background of the prescription opioid epidemic in your country.

    Unresolved issues of taxonomy of painful musculo-skeletal conditions will also loom large in health care reorganization. The current state of diagnostic confusion will need to be resolved.

    I agree there are grounds for your pessimism, at least in the short-term.

    The situation in Australia is somewhat better but the outlook for pain management services is somewhat clouded in this time of severe budgetary restraint.

  14. Dave at 7:24 am

    John- If medicine in the U.S. was focused on caring instead of capitalism and technology-that would be a cultural change. Medicine is too proud and doctors too certain in the U.S. to evolve from laboratory medicine. And, as I see it they aren’t even very good at laboratory medicine.
    The only cultural change I see in health care is from social media. Social media has provided needed support and information to people. But with regard to medicine, I don’t see any real changes in fibromyalgia in the U.S. or in medicine in general. Change to U.S. doctors is resisted and medical narcissism prevails.

  15. John Quintner, Physician in Pain Medicine at 6:01 pm

    @ Veronica (and Dave). You do not deserve to be either ignored or punished by your health care professionals. How about being comforted and supported by them?

    But I am really not sure whether these options can be effectively delivered to pain sufferers within your highly-regulated and time-based health care system.

    The blueprint for transforming pain care, education and research (“Relieving Pain In America”) published by your Institute of Medicine in 2011 called for a cultural change but gave no indication as to the particular change it envisaged. Your guesses will be as good as (or better than) mine!

  16. John Quintner, Physician in Pain Medicine at 5:34 pm

    @ Dr Rodrigues. If you really believe that inserting stainless steel needles into voluntary muscles conveys any therapeutic benefit beyond placebo effects, then please publish your results in a peer-reviewed scientific journal. Otherwise, your oft-repeated assertions are only “noise”.

    However, this is a most important issue as there are others in the field of musculoskeletal medicine who hold to the belief that noxious input from myofascial “trigger points” can maintain the hypersensitivity of the central nervous system found in patients with the syndrome of chronic widespread pain (Fibromyalgia Syndrome). There is no scientific evidence of which I am aware that supports them in this belief.

    Finally, I do not have a protocol to recommend to those who, like you, are chasing phantoms (i.e. “trigger points”) within muscles and/or other tissues.

    In my opinion, which you obviously do not accept, the houses of cards upon which the constructs of fibromyalgia and myofascial pain were erected have now collapsed.

  17. Veronica Clark at 5:14 pm

    I could not believe how spot on this article was in relation to me! My rheumatologist gave up on me, telling me there “is nothing I can do for you any more”. I also have sjogrens, which adds considerably to the amount of pain I am in 24 hours a day, regardless of the weather. This has been since my diagnosis of fibro myalgia in 1996, which I always felt was made because no doc could figure out ‘what’ was causing all of the pain. I can take a lot, but this has ruined my life. No pain med, no matter what it is, takes all of the pain away, ever. I try the grin and bear it way, but if I use my right arm, I get severe migraines, and am right handed. No one has tried to figure that one out either. Are we to be just ignored, or left to feel as we are being punished?

  18. Stephen S. Rodrigues, MD at 4:25 pm

    “indulged in wild speculation and then attempted to pass it off as accepted scientific knowledge.”

    And what is your (unwild) speculation on the topic?

    I’ve combed through a over a dozen textbooks from the 40’s to present and rediscovered a lot from the concepts of those MDs. They all were on the trail of a similar discovery. Then Gunn sealed the deal for me with Cannon’s Law and this simplistic stainless steel needle theory:
    1. The needles ignites the innate healing cascade the through the skin “pinhole” into the affected muscles. (The also can be done with hands-on options too, like kneading, twisting, massage or IR or Infrared heat of the tissues. Unfortunately the amount of effort needed to ignite the cascade is more that a person can tolerate. The needle can accomplish the same more efficiently and profoundly with less collateral tissue damage.)
    2. The stainless steel needle depolarizes of the internal electrical system of the contracted muscles. It is amazing to see the muscles instantaneously relax and unlock their grip! (It’s the best tool to accomplish this safely and repeatedly as needed.)
    3. Needle “pinhole” or micro-invasive probing through the skin to stimulate the dense, tighten, stiff, low oxygenated myofascial/muscle tissues. (the needle is the best tool to reach to the deeper muscle layers and even to the periosteum, minimal-traumatically.)
    4. All of the above 3 events are done simultaneously at one sitting which is the absolute best environment for a more complete healing cycle.

    Gunn/Cannon, Travell/Simons and the rest of the pioneers were geniuses!!!

    Can your protocol be reproduced in the office setting or at the bedside?
    If it’s safe, non-toxic and relatively harmless, I’m ready to try your protocol tomorrow. Email the paper or post a synopsis for all to see.

    Are you personally in real time using your protocols or are you just reporting on what you find from the web?

    OMG, I have intentionally been very cordial on your mindbody site, your influence is palpable.
    The truth is will set you free but first it will piss you off! G. Steinem

  19. Mark Maginn at 3:36 pm

    BlackBelt

    Could you expand on your comments above? I would certainly appreciate it, it might help me better understand the argument here. Thanks.

    Mark Maginn

  20. John Quintner, Physician in Pain Medicine at 2:34 pm

    @ Dr Rodrigues. Just for the record, I have never blocked any of your comments from any website. No doubt website moderators have found some of your opinions to have been irrelevant to the topic under discussion or they have been personally offensive.

    Yes, I am endeavoring to promote a new paradigm for Pain Medicine on the grounds that many of the contributions to the literature made by the various pioneers of pain therapy who you mention have indulged in wild speculation and then attempted to pass it off as accepted scientific knowledge.

    I have nothing whatsoever to do with insurance companies. In fact, I have spent a large amount of time over the years opposing nonsensical opinions of their favored “independent” medical specialists.

    Finally, as for fame and fortune, if the former has come to me it has been hard-earned whereas the latter has eluded me.

  21. John Quintner, Rheumatologist at 1:33 pm

    @ BlackBelt w/Fibro. I truly believe you have missed the point of my column. Nowhere do I doubt the reality of the clinical phenomena. Your unswerving faith in diagnostic blood tests, as expressed elsewhere on this website, may well be justified. Only time will tell.

  22. dave at 12:34 pm

    John- What makes you think rheumatologists, or medicine, will change fibromyalgia care in the near future?

  23. Stephen S. Rodrigues, MD at 11:30 am

    OMG, these are bold statements!

    I’ve concluded that the researchers in the UK, Australia and some other parts of the world are attempting to redefine medicine, biology, anatomy and physiology of the last 100 years. I’ve read your articles and have concluded is that YOUR concepts do not make sense!

    You have even blocked my comments from your countries research website blog and comment sections, in an attempt to confuse the young new scientist.

    Why are you doing this?
    1. To promote a new paradigm of therapy that is actually a ruse or cloak over all of the the contributions of pioneers of pain therapy of the last century. Meaning the results you profess are actually rooted in the old concepts with a disguise.
    2. To appease the Gods of the insurance companies esp Worker’s Comp that the pain therapy they have designed and implemented is validated by negating the past.
    3. Fame and fortune??

    Travell/Simons, Rachlin, Hackett, Gunn, Burke, Lennard, DiFabio, Pybus and many others have it correct!!!

    Sorry I can not let you do this to all of the nonstructural pain sufferers!

  24. BlackBelt w/Fibro at 10:30 am

    Quinter, I truly cannot believe you are allowed to post your “fibromyalgia isn’t real” B.S. here under the guise of another topic. Perhaps both the dried blood test and the protein blood test (which prove the very real existence of fibromyalgia as a medical condition) signify the end of an intolerable era. Perhaps now suffering patients will no longer have to deal with foolish, bigoted “physicians” with your mindset.