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Sunday, May 24, 2015

A Fibromyalgia Perplex comment regarding symptom clusters turning into a syndrome







John Quintner  May 23, 2015  8:10pm
Fred, would you agree that the fundamental error made by Yunus et al. [1981] was that they mistook their “symptom cluster” for a “syndrome”?
A “symptom cluster” is a stable group of two or more concurrent symptoms that appear at face value to be related to one another and to be independent of other groupings of symptoms. [Kim et al. 2005]
One way of understanding the concept of a “symptom cluster” is by way of its analogy with recognizable but imaginary patterns seen within constellations of stars in the night sky. They might appear to be close to one another but in fact they have no real connection and can be light years apart.
Based on this misconception Yunus et al. [1981], and those who followed them, constructed Fibromyalgia, a process that can be likened to building an edifice of bricks but without using any mortar to bind them together.
As you know, I am not comfortable with seeing fibromyalgia as “part of a continuum of polysymptomatic distress”. The application of such a descriptor tells us absolutely nothing about the underlying pathogenesis and pathophysiology of the distress.
References:
Kim H, McGuire DB, Tulman L, Barsevick AM. Symptom clusters; concept analysis and clinical implications for cancer nursing. Cancer Nursing 2005; 28: 270-282.
Yunus M, et al. Primary fibromyalgia (fibrositis): clinical study of 50 patients with matched normal controls. Semin Arthritis Rheum 1981; 11: 151-171.

Hi everyone,  This was a reply to Fred Wolfe in my last post.  I think it has some merit, because I know that people with fibromyalgia have conditions that are just attributed to fibro and then never treated.  Comorbidities can be missed and therefore people with fibro go untreated.  I know this has been true for me.  Since I have arrived in Prescott, AZ I have happily been diagnosed and treated for asthma, allergies that cause asthma, and sleep apnea.  Just being treated for these conditions have made a huge difference in my life.  I was told previously that I had air hunger and a sleep disorder and then I was given Lunesta but it didn't work because I wasn't breathing every 4 minutes.  I am so fortunate that I found really smart doctors that have the capability to look beyond the diagnosis of fibromyalgia!!

Saturday, May 23, 2015

A brief history of fibromyalgia and an even more brief rebuttal


It's so good to be back and writing in my blog again!  My adventures in Younique and Nerium have consumed so much of my time.  I am resigning from Nerium so I have more time to spend here with all of you.  The information below was taken from the ongoing debate called The Fibromyalgia Perplex.  This is a post that was written today by John Quinter, MD about the history of fibromyalgia and the struggle physicians have had to define this disease.  It can become a bit dry so if you are having difficulty continuing to read this "dissertation" you may find the comment by Fred Wolfe below this writing to be of interest.  This demonstrates the differing opinions that physicians and scientists debate in their struggle to understand and define this illusive disease called Fibromyalgia.  The one thing I know is that all of us struggling with this disease every day most definitively understand and experience the pain and and other symtomotology of this disease.  This is our reality.  Blessings to all of you!


THE TRANSMUTATION OF FIBROMYALGIA


Fibromyalgia was officially recognised in 1990 when a Multicenter Criteria Committee of the American College of Rheumatology recommended the term be used as a means of classifying patients presenting with chronic widespread pain and tenderness [1].
Pain was considered to be “widespread” when it was experienced in all four quadrants of the body (i.e. on both the left and right sides and above and below the waist).
Tenderness was assessed over 18 specifically chosen tender points. When patients with widespread pain were judged by their clinician to be hypersensitive at 11 or more of these points, the diagnosis of Fibromyalgia could be applied.
Some 20 years later, the criteria for diagnosis were broadened by the introduction of a symptom severity scale score to replace the tender point count. Widespread pain remained a diagnostic criterion [2].
The clinical problem of “RSI” (repetitive strain injury)
In Australia the term “RSI” (repetitive strain injury) came to be broadly applied to all conditions characterised by neck and/or upper limb pain presenting in an occupational context.
“RSI” embraced localised conditions, such as carpal tunnel syndrome, dorsal wrist tenosynovitis, lateral epicondylitis and rotator cuff “tendonitis”, along with poorly understood conditions characterised by diffuse pain felt in the neck, pectoral girdle and arms, often accompanied by positive sensory symptoms, cramp, loss of muscle strength, and vasomotor abnormalities [3,4].
A vigorous medical debate had taken place during the 1980s over the categorization of the sub-group of patients with diffuse pain. On the one side were those who espoused the theory of muscle overuse injury, whilst on the other side were those who argued that those with these conditions were reflecting psychological distress that was manifest as somatic symptoms [5].
However, the homogeneity of presentation of these patients implied not only a common pathophysiology but also one that could be attributed to dysfunction of the nociceptive system itself, consistent with what was then the current definition of “neuropathic” pain. This explanatory model was proposed on the basis of careful clinical observation integrated with current knowledge of mechanisms of nociception [3,6].
Fibromyalgia becomes a regional condition
The 1980s brought the dreaded “RSI” (repetition strain injury) with interaction between Fibromyalgia Syndrome and the medico-legal system [7].
One of the key proponents in Australia of fibromyalgia, Geoffrey Littlejohn, was keen to extend the construct to subsume these syndromes of less diffuse pain, which were then being called “RSI”. He and his colleagues argued that these conditions were in fact a “subset” of fibromyalgia. 
They conjectured: Mechanisms similar to those in generalised fibromyalgia are likely to operate, although to a lesser extent, in patients with primary chronic localised pain or localized fibromyalgia [8].
This reconceptualisation of “primary chronic localised pain” as “regional fibromyalgia” presumed the validity of a parent syndrome.
However this exercise was an example of the logical fallacy known as “begging the question,” and was particularly problematic when the diagnostic credibility of both conditions was being hotly contested.
In the absence of knowledge or theory regarding the pathogenesis of fibromyalgia, these authors nonetheless took a bold step to explain the pathogenesis of local pain that became regional.
To accomplish this, Littlejohn invented the concept of “simple injury to the muscle-tendon unit” but neglected to provide any pathological evidence to support the existence of such an entity:
The majority of patients with the “RSI problem” have a chronic pain syndrome, which, although it may be triggered by a simple injury to the muscle-tendon unit, is not due to persisting tissue damage of injury. Extensive investigations seeking out tissue damage will only show age-related changes which do not explain the diffuse symptoms” [9].
Thus, in summary, “RSI” is seen as a complex pathophysiological pain problem where clinical features may be approached using the paradigm of localised fibromyalgia syndrome” [9].
This step needs to be dissected in order to understand the transmutation of fibromyalgia.  A diffuse pain syndrome of unknown pathogenesis was invoked to explain “regional” or “local” apparently similar conditions of allegedly known pathogenesis.  There was never a “paradigm” of “localized fibromyalgia syndrome”; it was never proposed that (diffuse) fibromyalgia syndrome could be “triggered by a simple injury to the muscle-tendon unit”.
These assertions were and are entirely conjectural.
Medico-legal implications
Littlejohn’s next contribution was to downplay the nexus between “localised fibromyalgia syndrome” and work-related factors. This strategy was to have important implications for those with the condition who might be seeking workers’ compensation payments, particularly so in New Zealand [10].
Fibromyalgia can also occur as a syndrome of localised or regionalized pain and a low pain threshold. This situation is common after otherwise short-lived “soft tissue” injuries involving spinal areas, particularly in the context of compensation” [11].
Littlejohn defined “low pain threshold” in terms of sensitivity at the arbitrarily chosen “tender points” in fibromyalgia, which he claimed to be “characteristic regions used clinically to define pain threshold” – a circular argument – and that “sensitivity at these points is increased in pain-free subjects, but to an even greater extent in patients with fibromyalgia syndrome.”
But defining “sensitivity” in terms of the stimulus being applied is highly subjective and influenced by contextual effects and, as Littlejohn noted, this diagnostic criterion (along with widespread pain) has not been validated for medicolegal or disability purposes.
Furthermore, he did not produce evidence to support his claim that “low pain thresholds were common” after short-lived “soft tissue injuries” involving spinal areas. Yet again, conjecture was being passed off as established knowledge.
Littlejohn [12] then raised the spectre of psychogenesis:
The regional features seem to relate to local biomechanical factors around the spine, either postural or secondary to simple strains. When central sensitisation occurs it is likely that central neurophysiological factors, including psychological influences, allow for the amplification of otherwise subclinical spinal reflexes. These in turn cause regional pain, tenderness, muscle tightness and dermatographia.
The concept of “otherwise subclinical spinal reflexes” is yet another of Littlejohn’s conjectures. Furthermore, he failed to explain the mechanism(s) by which “central neurophysiological factors” could be responsible not only for their amplification but also for the various clinical phenomena.
Finally, Littlejohn [13] announced “operational” criteria for a diagnosis of localised fibromyalgia. But in fact they were Littlejohn’s own non-validated criteria [12]:
Regional pain syndromes are also referred to as localised fibromyalgia. Although no validated classification or diagnostic criteria exist for these condition, operational or clinically useful criteria have been proposed: regional pain and regional lowering of pain threshold, and the presence of sleep disturbance, fatigue, muscular stiffness and emotional distress in the absence of a primary nociceptive cause for pain.
“Using this model, regional pain syndrome appears to be on a spectrum between the simple self-limited aches and pains of everyday life and persistent musculoskeletal syndromes such as fibromyalgia.”
Littlejohn’s pronouncements are tautological: if regional pain syndrome is in fact localized fibromyalgia syndrome, then it follows that fibromyalgia is generalised regional pain syndrome.
What was achieved?
Where has this transmutation of fibromyalgia taken us? Has any light been shed on diffuse or regional pain syndromes?
Littlejohn attempted to fill gaps in our understanding of  “RSI” by interpolating his personal views on Fibromyalgia into the debate.  However all he achieved was to introduce circular arguments based on conjecture.   How did the guardians of the literature allow that to happen?
John Quintner (Physician in pain medicine and rheumatology)
Milton Cohen (Specialist pain medicine physician and rheumatologist)
References:
1. Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombadier C, Goldenberg DL, et al. The American College of Rheumatology 1990 criteria for the classification of fibromyalgia. Arth Rheum 1990; 33: 160-172.
2. Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, et al. The American College of Rheumatology preliminary diagnostic criteria fibromyalgia and measurement of symptom severity. Arthritis Care Res 2010; 62-600-610.
4. Cohen ML, Arroyo JF, Champion GD. The relevance of concepts of hyperalgesia to “RSI”. In: Bammer G, ed. Working Paper No. 31. Canberra: Australian National University, 1992.
5. Quintner JL. The Australian RSI debate: stereotyping and medicine. Disabil Rehab 1995; 17(5): 256-262.
7. Reilly P, Littlejohn GO. Fibrositis/fibromyalgia syndrome: the key to the puzzle of chronic pain. Med J Aust 1990; 226-228.
8. Granges G, Littlejohn GO. Pressure pain thresholds in pain free subjects, in patients with chronic regional pain syndrome, and in fibromyalgia syndrome. Arthritis Rheum 1993; 36: 642-646.

9. Littlejohn GO. Key issues in repetitive strain injury. J Musculoskel Pain 1995; 3(2): 25-33.
10. Rankin DB. Viewpoint: the fibromyalgia syndrome: a consensus report. NZ Med J 1999; 112: 18-19.
11. Littlejohn GO. Med J Aust 1996; 165: 387-391.
12. Littlejohn GO. Clinical update on other pain syndromes. J Musculoskeletal Pain 1996: 163-179.
13. Littlejohn GO. Fibromyalgia syndrome and disability: the neurogenic model. Med J Aust 1998; 168(8): 398-401.
 One Comment

  1.   Fred Wolfe  May 23, 2015
    In their post on “The Transmutation of Fibromyalgia” Quintner and Cohen rail against a renaming and reinterpreting of fibromyalgia. In the US, one often sees the famous quotation from US Supreme Court Justice Potter Stewart who wrote of pornography that he couldn’t define, but “I know when I see it.” It can be that way with fibromyalgia, too. The idea that fibromyalgia could be “local” or regional can be found in the initial description of “fibrositis” in the first decades of the 20th century, and it is repeated in many articles and description before the “official” definition of fibromyalgia of the 1990 American College of Rheumatology criteria. Yunus, in 1981, in his defining on article on fibromyalgia, “Primary Fibromyalgia (Fibrositis): Clinical Study of 50 Patients With Matched Normal Controls,” writes of localized fibromyalgia: “Localized forms of fibrositis, e.g., cervical fibrositis of taxi drivers, gluteal and back fibrositis of bus drivers and localized fibrositis due to trauma (obvious or due to repetitive use) may be recognized by history, involvement of limited (one or two) anatomic sites’ and by the usual absence of non-musculoskeletal symptoms …” In the more recent literature one finds phrases such as “incomplete fibromyalgia;” one author writes of “pre-fibromyalgia” to identify patients who have some but not all of the criteria requisite findings. More recently, the description of the polysymptomatic distress scale and the suggestion that fibromyalgia may be part of a continuum of distress further weakens the classic definition and understanding of the syndrome. In such setting, “I know it when I see” has more than a little utility.
    Some see fibromyalgia as a “central pain disorder,” some as a somatoform condition, some as an invented illegitimate disorder. How one sees it often depends on the beliefs of the observer. I am comfortable in seeing it as part of continuum of polysymptomatic distress in which fibromyalgia is a shorthand for the end of that continuum. When the collection of symptoms and beliefs that we call fibromyalgia becomes reified and then is further split into compartments (local or regional fibromyalgia) we enter a world of religious like beliefs. Quintner and Cohen ask about “the guardians of the literature” (tongue in cheek, I hope). Last week I reread a book that I hadn’t read since childhood, “The Emperor’s New Clothes.” John, Milton, the guardians are in that story.

Sunday, April 19, 2015

EHT: A Revolutionary Brain Health Formula That Provides Hope for People With Fibromyalgia

THIS MESSAGE IS IN REFERENCE TO THE FOLLOWING VIDEO IN THE NEXT POST.   Nerium International is proud to announce the partnering with Signum, a biotech company.  Dr. Jeffery Stock, a scientist and researcher, has discovered EHT in his Princeton University lab.  This researcher and his team have worked for 20 years on this discovery.  I see a huge opportunity for all of us with fibromyalgia and the brain fog we experience.  This product may be key for all of us with chronic illness for enhancing brain health, boosting immunity and giving back some of our energy and feelings of well-being.  The introductory period will be from May 15, 2015 to August 1, 2015 and is limited to Brand Partners and Preferred Customers.  After August 1, 2015 the EHT supplement will be available for purchase by the general public.  I will be starting the EHT supplement and will write about my experience!  Please contact me for more info at 949-939-5295, ValdaGarner@gmail.com or ValGarner.Nerium.com  I am so hopeful that EHT will help us all boost our quality of life!!  I am a Nerium Independent Brand Partner and am taking names and contact info for a waiting list for EHT.  Blessings to you all!

EHT: A revolutionary brain health formula



Nerium International is proud to announce the partnering with Signum, a biotech company.  Dr. Jeffery Stock, a scientist and researcher, has discovered EHT in his Princeton University lab.  This researcher and his team have worked for 20 years on this discovery.  I see a huge opportunity for all of us with fibromyalgia and the brain fog we experience.  This product may be key for all of us with chronic illness for enhancing brain health, boosting immunity and giving back some of our energy and feelings of well-being.  The introductory period will be from May 15, 2015 to August 1, 2015 and is limited to Brand Partners and Preferred Customers.  After August 1, 2015 the EHT supplement will be available for purchase by the general public.  I will be starting the EHT supplement and will write about my experience!  Please contact me for more info at 949-939-5295, ValdaGarner@gmail.com or ValGarner.Nerium.com  I am a Nerium Independent Brand Partner and am taking names and contact info for a waiting list.  Blessings to you all!!

Saturday, March 7, 2015

The Fibromyalgia Perplex Comments by C.S. Choe

Ok, here we go!  This is a comment that may get this discussion/debate going in reference to C.S. Choe's comments on The Fibromyalgia Perplex (http://www.fmperplex.com/).  I have posted the part of Choe's comment that is representative of the entire comment.  If you are interested in the entire comment please request this and I will e-mail you the comment.

" I have been fascinated/angered by Fibromyalgia since finding out about it in the early 2000′s. I guess angered mostly by the fact that it is within the same class of diseases as SLE or Lupus, which I have. I also have unexplained aches and memory problems as well as suffering from a disease which can at times flare while I appear outwardly healthy. Yet at the same time, I’ve also suffered from seizures, hair loss, kidney disease, which can not be seen as just self-diagnosed or self-reported. I guess the idea that my self-reported pain, fatigue, and cognitive problems are in itself diagnosed as a separate illness just… doesn’t sit well with me. I guess I’m curious how a knowledgeable health professional may be able to differentiate Lupus from Fibromyalgia with only those symptoms. I think most times I don’t even go to an urgent care facility or see a doctor for symptoms that are termed “Fibromyalgic” because I actually don’t know what normal tiredness or pain is because I’ve had Lupus since I was 11. To imagine that people flood emergency rooms for feeling tired or “hurting all over” just seems to diminish and minimize diseases with measurable and independently assessable symptoms like Lupus."  C.S. Chloe

Firstly, C.S. Choe is consumed by his/her Lupus and is offended by any other disease encroaching on his "territory".  Since Fibromyalgia symptoms cannot be measured then it doesn't exist according to C.S. Choe.  That's an interesting logic for someone working on a PhD in psychology.  For those of you that don't know, a PhD in psychology is rich with research.  That includes the study of others' research and the research that the PhD student must do for course work.  In addition, Psychology is an interesting area of study, because symptoms are self-reported and could easily be faked.  So to me this is a paradox that doesn't make sense.  Maya Angelou made a comment about people revealing who they are.  It went something like this: When someone shows you who they are, believe them.  C.S. Choe's comments do just that.  He/she seems to be frustrated and angry that a self-reported disease like Fibromyalgia would compete with his perception that his Lupus is much more important.  My immediate reaction was anger, but then I realized that all C.S. Choe is doing is showing everyone who he is.  The fact that Choe would minimize a recognized disease and the misery that goes along with it is a testimony of how self-absorbed he is and he lacks compassion for others.  For me, my struggle with Fibromyalgia has resulted in more sensitivity, compassion, and love for all people living with a chronic illness.  I welcome any comments, because I love comments!!  Let me know what you think!

The Fibromyalgia Perplex

I have been following The Fibromyalgia Perplex, a collection of scientific and research based professionals that share and debate the topic of Fibromyalgia.  Perplex means to think logically and decisively about a topic. The Fibromyalgia Perplex blog has been visibly absent due to a "false start".  This blog is now back again and the rules for posting are quite restrictive:

About comments. We want this blog to be about research and discussions concerning fibromyalgia. To post to this blog you should be a published author, have other academic credentials, or would be welcomed as a discussant in an academic journal. We make these somewhat arbitrary rules to try to exclude the general, non-scientific public. We welcome comments by all scientists and social scientists, not just those who are physicians. This blog is moderated, meaning that the editors decide what will appear. In general, we will not censor on-topic scientific posts provided authors meet the above guidelines. If you don’t fit our guidelines and think you have something to contribute, send the editors an email at fmperplex@gmail.com. [As a modification, we will accept post from non-profesionals provided they meet certain criteria.]


The Fibromyalgia Perplex blog can actually be quite tedious for people that are not interested in research and the scientific method.  But if you are interested in "getting inside" of the heads of scientists, social scientists and researchers, then this blog is for you.  In the past, the participants have debated quite vigorously and reading about their thoughts and opinions is quite interesting and frustrating at the same time.  It is frustrating when the reader is not in agreement, but does not have the "clearance" to be able to reply and enter into the debate.

So, I put this out here for all of you to participate as observers in the sidelines.  To alleviate our frustrations, I welcome all of you to bring the debate here to my Web page so that all of us have a forum to discuss and debate the topics in discussion on The Fibromyalgia Perplex.  All I ask is that we all be respectful of each other and enter into this discussion/debate in good faith.  The url for The Fibromyalgia Perplex is http://www.fmperplex.com/  Meanwhile, enjoy the lively discussion and debate and I look forward to sharing our thoughts and experience related to this blog (The Fibromyalgia Perplex)!!  Blessings to all of you!

Saturday, February 21, 2015

Run as fast as you can

When you have fibromyalgia life gets a whole lot more complicated.  But you already know that!  I'm attempting to work two home businesses and I'm feeling the strain.  I haven't blogged in awhile because I'm more than maxed.  One of my businesses is on hold as I work to ramp up my second home business.  Start up always takes extra work and quite frankly I haven't been up to the task.  Most of the work I'm doing is online, but that takes a great deal of mental activity and that's exhausting!  I'm having more generalized pain and headaches, and the night sweats have been persistent and expected nightly.  So, is this the usual whine??  Absolutely not.  It's a validation of how difficult life can be when you have a chronic illness.  Anything you try to accomplish takes its toll and the bigger the ambition and the faster you run the harder you fall.  That's just the way it is.  But I guess for most of us with fibromyalgia we keep trying to run a little harder and a little faster in an effort to challenge this disease that threatens to rob us of our life.