Reprinted with the kind permission of Celeste Cooper, RN.
Fibromyalgia is not a new syndrome or disorder. It has been officially recognized by the health care industry for the past two decades, and has been known to exist for more than a hundred years. Symptoms of what we know today as FM were first described in the seventeen hundreds, and the disorder was first observed and documented by British surgeon William Balfour in 1816. In 1904 the same collection of symptoms was recognized by another British fibromyalgia pioneer, Sir William Gowers, who described chronic soft tissue syndromes as fibromyocitis...
...Later in the nineteen hundreds the term fibrositis appeared in North American rheumatology textbooks. In the 1940s fibromyalgia was thought to be associated with depression and stress, and later, in 1975, Harvey Moldofsky and Hugh Smythe, both Canadian medical doctors, noted sleep abnormalities and fatigue in patients with diffuse musculoskeletal tender points. They also believed that fatigue could occur due to a disruption in an individual’s normal circadian rhythm, regardless of normal sleep duration. Even today, there are those who believe FM may be secondary to psychological stress or disordered sleep. Today evidence includes the physiological upset, regardless of what the aggravating factor might be. Still, by the very name itself—fibrositis—it seems the medical community back in 1904 believed the disorder to be inflammatory in nature. Conventional medical practitioners would have considered it foolhardy for someone to follow Dr. Gower’s theories and delay proper treatment.
Finally, in 1981 a connection was made between fibromyocitis and the non-inflammatory systemic symptoms. This led to adoption of the term “fibromyalgia” to identify the syndrome variously described as fibromyocitis, muscular rheumatism, tension myalgia, psychogenic rheumatism, tension rheumatism, neurasthenia, and fibrositis... Excerpt - Cooper and Miller, 2010
In 1990, the American College of Rheumatology (ACR) adopted the tender point count for diagnosing fibromyalgia. The tender point model was developed for a research study and was not expected to become diagnostic criteria, but it did. Today, this criterion is still the widest known most likely, because rheumatologists are having a difficult time agreeing with it, and rightly so. (To be discussed in Part II).
The symptoms of fibromyalgia must affect all four quadrants of the body equally, both sides above the waist and both sides below the waist. In other words, if there is a tender point in the left elbow, there will be another tender point in the same spot on the right elbow. The painful tender points (not to be confused with trigger points) must be consistent and persist for at least three months. Tender points must be examined by applying enough pressure to make the examiner’s fingernail blanch (turn pale).
While efficient in diagnosing fibromyalgia, the tender point model met with criticism because not all people believed to have fibromyalgia have 11 tender spots, and others have tender spots located in different areas. It is my opinion that some of these areas are/were due to a frequently overlooked comorbid condition called myofascial pain syndrome.
Other common symptoms historically associated with fibromyalgia are:
Pain (often severe and disabling)
Widespread body aches and soreness
Non-restorative sleep (even with eight hours of sleep)
Malaise—lack of zest or energy, fatigue
Three of these are considered primary symptoms of fibromyalgia today.
Non-restorative sleep (even with eight hours of sleep)
Malaise—lack of zest or energy, fatigue
(Today, cognitive deficit is also considered a primary symptom)
It is believed today that Florence Nightingale (the first nurse) suffered from fibromyalgia and that is why fibromyalgia day is May12th, the day believed to be her birthday.
Historically research has focused on many hypotheses. Despite this, the World Health Organization included a code for fibromyalgia
in the International Statistical Classification of Diseases and Related Health Problems (ICD 10-CM). In 2012, the Social Security Administration made a ruling on how to assess fibromyalgia
as a "Medically Determinable Impairment."
According to the National Fibromyalgia and Chronic Pain Association
(NFMCPA), approximately ten million Americans have been diagnosed with fibromyalgia. There is no doubt that awareness has increased over the past few years. Could it be that the FDA approving medications for fibromyalgia and the constant media attention for these medications has done this? Read fellow advocate Cort Johnson's thoughts here
, and the results of a survey done by the National Pain Report here
. Even though these medications may not be what we were hoping would work, there is no denying that media attention has raised awareness, despite advertisement for boosting pharmaceutical companies bottom line. Think about the credibility fibromyalgia would have if our families, friends, peers, and even doctors knew there is scientific proof that fibromyalgia is biological syndrome and that it's not all in our heads.
It's coming. Never give up hope!
I feel very fortunate to have lived long enough to see the FM/a blood test
developed, tested, and researched well. Thanks to the determination of the scientists, we now have a biomarker that shows "Unique Immunologic Patterns in Fibromyalgia." (Behm, et al.) This should come as no surprise because of the comorbid disorders.
Let's talk a bit about comorbid disorders. Irritable bowel syndrome, widely recognized as comorbid to FM is thought by many to have an immune component and that it is an organic disorder, meaning there is a biological reason that the bowel function is disrupted. Irritable bladder, interstitial cystitis, and other pelvic disorders have been closely associated with fibromyalgia, some autoimmune. Leaky gut syndrome (LGS) has been associated with FM, and we now know LGS plays a role in many autoimmune diseases, even psoriasis.
According to both the National Institute of Health
and the Center for Disease Control
fibromyalgia occurs as a comorbid disorder in rheumatoid arthritis, systemic lupus erythematosus, and ankylosing spondylosis. These are autoimmune diseases. In addition, did you know that osteoarthritis (thought by some to have a connection to FM) could have an immune component? Research also continues to suggest that thyroid disease is prevalent in a subset of fibromyalgia patients.
Included in the Wolfe, et al criteria (2010) was a list of "polysymptomatic and fibromyalgianess" complaints. Though it may not have been intentional, consideration of symptoms without investigating other causes, could suggest that fibromyalgia is a psychosomatic mental illness (now defined in the DSM-5 as somatic symptom disorder). Because of this, it is possible we will not get the tests, diagnosis, and treatments we need. So if you have unusual symptoms that don't respond to treatments or medications, be persistent. If you doctor is not receptive, get a second opinion.
Also not a surprise is that the sympathetic (SNS) and the autonomic nervous (ANS) systems may be in on the action. This could explain the involvement of Raynaud's, IBS, and irritable bladder. Raynaud's is thought to occur due to SNS disruption, and both IBS and irritable bladder are thought to have an immune AND sympathetic system involvement. For all the migraineurs with fibromyalgia, you will be interested to know that migraine may be due a sympathetic nervous system that has gone haywire.
Fibromyalgia has an effect on the autonomic nervous system as evidenced by research on post exertional malaise, postural orthostatic tachycardia syndrome (thought by some to also have an immune component, Li, et al.), and neurally mediated hypotension, also seen in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
All these things might explain why the trigger points of myofascial pain syndrome, a peripheral pain generator in many chronic pain conditions, don't sustain treatment in fibromyalgia patients.
The following excerpt is from correspondence I had with Dr. Frederick Wolfe regarding the omission of linking comorbid conditions in the Preliminary Proposed Diagnostic Criteria.
Dr Wolfe stated: I don't share that concern or agree with you. However, the physician can certainly chose to exclude symptoms of known diseases if she chooses. That's why we ask physicians to analyze the symptoms and make a judgment. You misread the ACR criteria when you write the criteria “define symptoms of several autoimmune disorders to be considered.” The criteria refer to symptoms that are present in humans irrespective of disease. There is no clustering between FM and the diseases and syndromes you cite. FM occurs in all diseases and illnesses, but more often in diseases that cause pain or are worrisome. And it is common in osteoarthritis and back pain syndromes, which are not autoimmune at all. (Full article here.)
I take issue with Dr. Wolfe's remarks because fibromyalgia is being used interchangeably with the term centralization/amplification of pain. If this is true, then Dr. Wolfe's comment makes perfect sense. However, in my opinion, fibromyalgia is NOT synonymous with centralization when centralization is considered as amplification of pain. While there is a centralization/amplification component to FM, just like there is with all chronic pain conditions, not all persons who experience chronic pain have primary symptoms of fibromyalgia or the comorbid disorders that have been identified in other research, research that Dr. Wolfe and some others fail to recognize. Also frequently neglected is the presence of myofascial pain syndrome in most, if not all chronic pain disorders. We should not be confused regarding the differences between FM and MPS. (You can watch my interview with Anthony Castelli here
.) This is purely my opinion, and it could change, but bring me the proof.
Both the NIH and the CDC agree that fibromyalgia is prevalent in certain autoimmune disorders. You can read more on my thoughts on why Dr. Wolfe and his peers are missing important pieces to the puzzle in my blog "A Comprehensive Review on the Proposed and Modified Diagnostics for Fibromyalgia
The Proof Is in the Pudding
Dr. Wolfe once rebuffed the research of Dr. Albrecht, et al in his blog, “Junk Science, Junk Ethics
.” It will be interesting to see the response to the follow up study on the Behm study, which has been done and is to be published. This follow up study shows the FM/a test is 93% effective in distinguishing fibromyalgia independent of other comparative autoimmune disorders. More importantly, the NFMCPA tells us
the NIH will be using the FM/a test in fibromyalgia studies to verify diagnosis. This means that our future holds the distinction of having a biomarker, just like the other immune disorders that frequently occur with it.
Doctors Alan Light and Kathleen Light have been leading studies that show there is a specific "Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome." They believe they are close to also having a biomarker for fibromyalgia, and I understand that Dr. Robert Bennett is doing research along these same lines.
Therefore, it is with great delight that I say:
What does this mean for the future?
"2014 is the year that has proved without a doubt FIBROMYALGIA IS REAL!"
In the past, there was no biomarker, nor was there advancing research on genetic expression.
We can expect:
Fibromyalgia will no longer be used as a wastebasket diagnosis (yes, it still happens).
We won't have to endure publicized terms such as "Fibromyalgianess."
Improvement of meeting the guidelines for disability benefits.
Better tracking by the World Health Organization.
Better funding for research into the biology of fibromyalgia.
Target rich treatments.
While having a biomarker is important, until we find a cure, we will still need to use approaches for coping with chronic illness and pain. Many disorders have biomarkers, such as MS, SLE, RA, diabetes, etc., but these patients still struggle to maintain, and many of them are also fibromyalgia patients. In every case, patient outcome is based on learning to life the best we can despite illness.
My suspicion is that once we understand the pathophysiology behind autoimmune disorders, we will be able to make great strides for prevention. It's not just about us, it's about future generations.
That's what gives us courage, determination, and hope.
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About the author: Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body, Wounded Spirit, Balancing the See Saw of Chronic Pain, Fall Devotions devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy. You can read more educational information and about her books on her website, TheseThree.com.