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What Is Fibromyalgia? Medscape Readers Weigh In

Bret Stetka, MD

 “Fibromyalgia is a name in search of a meaning.”
-Anonymous Canadian rheumatologist

What is fibromyalgia, aside from being a major frustration to patients and clinicians? And what causes it?

What Is Fibromyalgia? Introduction

Medscape recently published a debate posing these questions to Dr. Charles Argoff, a neurologist specializing in pain, and Dr. Jonathan Kay, a rheumatologist. Tempers flared throughout (respectfully of course), with Dr. Argoff taking the position that fibromyalgia is itself a distinct condition associated with widespread reduction in a patient’s pain threshold, and thus a heightened sensitivity to pain. Dr. Kay held a different view, arguing that fibromyalgia is merely a symptom complex with a number of possible causes.

Bret Stetka, MD

“Fibromyalgia is a name in search of a meaning.”
-Anonymous Canadian rheumatologist

What is fibromyalgia, aside from being a major frustration to patients and clinicians? And what causes it?

What Is Fibromyalgia? Introduction

Posted: 02/28/2011 – Medscape recently published a debate posing these questions to Dr. Charles Argoff, a neurologist specializing in pain, and Dr. Jonathan Kay, a rheumatologist. Tempers flared throughout (respectfully of course), with Dr. Argoff taking the position that fibromyalgia is itself a distinct condition associated with widespread reduction in a patient’s pain threshold, and thus a heightened sensitivity to pain. Dr. Kay held a different view, arguing that fibromyalgia is merely a symptom complex with a number of possible causes.

Etiology aside, progress has been made: There are currently 3 US Food and Drug Administration (FDA)-approved treatments for fibromyalgia. These are duloxetine, milnacipran, and pregabalin: all of which appear to be at least partially effective. Still, managing the condition remains a major challenge to clinicians, and disagreement continues as to what exactly fibromyalgia is and how one should approach diagnosis and management.

In response to our debate, readers — including physicians, nurses, and patients — flooded Medscape’s open discussion forum with their own thoughts, theories, and management tips (plus a few tirades). On the following pages, we’ve highlighted some of the more interesting, thoughtful, and strong reader opinions.

Medscape Readers Weigh In

A number of clinician readers made it clear: If there’s one thing that we know about fibromyalgia, it’s that we don’t know much about fibromyalgia. A rheumatologist cautioned, “Fibromyalgia is an invention, not a diagnosis. It’s a grab bag of puzzling symptoms, not all of which may be related. Calling it a syndrome is premature and unhelpful…; symptomatic treatment is offered until we know more.”

A psychiatrist then took an etiologic stab: “I would suggest that fibromyalgia is a neurophysiologic condition, and we may do a disservice to persons with psychiatric diagnoses by trying to separate “mental” from the rest of the functions of the brain. I believe we remain a long way from understanding adequately the complexity of the nervous system and how “abnormalities” are manifested in individuals. The pain and discomfort is real in that patients subjectively experience pain and discomfort, which is a function of neurolophysiologic activity ultimately registering in the brain.”

He/she went on to suggest potentially effective therapies in addition to the approved medications, including talk therapy, exercise, improved sleep hygiene, nutrition, and avoidance of stressors.

An internist took a harsher stance and proposed a solution: “Having been practicing primary care internal medicine for 30+ years, I feel like fibromyalgia snuck in the back door while practitioners were looking the other way. I know that sufferers defend their disease vigorously, but it is hard to buy an entity with no diagnostic lab, imaging, pathology, or other objective findings. Physical findings despite attempts to codify them are shaky at best, and a significant number of sufferers improve on antidepressants. What are we treating here? I propose a nationwide poll of practicing primary care physicians, neurologists, rheumatologists, and orthopaedists asking whether they think that this is a real entity. I bet the answer is no. When that is settled, we can get to the business of figuring out what really ails these folks instead of disabling them with an illness and telling them that they will never get better.”

There Is Some Evidence

Sleep disorders. Inflammatory cell abnormalities. A small fiber neuropathy. There is evidence suggesting that these conditions, along with many others, are associated with what is often diagnosed as fibromyalgia. In particular, sleep apnea and chronic hypoxia to the brain’s pain centers were frequently proposed by readers as potential inciters of fibromyalgia symptoms, and a number of commenters recommended ordering a sleep study in patients in whom the condition is suspected.

A family practice doctor of osteopathy wrote: “After finishing residency I was bombarded with patients who had tender points and the diagnosis of fibromyalgia. I started to screen [them] for sleep apnea and was flabbergasted at the number of patients who had hypoxic/apneic episodes at night. Now, after several years of screening patients, about 75% of my patients diagnosed with fibromyalgia have nocturnal oxygen or a CPAP [continuous positive airway pressure] machine.”

And then there was inflammation. As one reader pointed out, a 2010 article from Clinical Rheumatology [1] suggests that mast cells (MCs) may play a key role in the condition. The study reported significantly increased MC counts in the papillary dermis of patients with fibromyalgia. The authors wrote: “MCs are present in skin and mucosal surfaces throughout the human body, and are easily stimulated by a number of physical, psychological, and chemical triggers to degranulate, releasing several proinflammatory products which are able to generate nervous peripheral stimuli causing CNS [central nervous system] hypersensitivity, local, and systemic symptoms.”

A recent abstract presented at the International Association for the Study of Pain’s 2010 conference in Montreal, Quebec, Canada,[2] reported that patients with fibromyalgia have more symptoms of depression and alterations in peripheral and central nervous pain pathways compared with healthy individuals. A neurologist commented, “[Fibromyalgia] symptoms are the same as in small fiber neuropathy, and amenable to the same treatments. [This] study reports that patients with fibromyalgia have decreased epidermal nerve fiber density, as in small fiber neuropathy.” Another neurologist suggested “testing patients for small fiber neuropathy before telling them anything.”

The 4 D’s: Depression, Diet, Drugs, and Vitamin D

The complexity of fibromyalgia became more evident with still more reader input. “Fibromyalgia may be a name to sum up symptoms, but the symptoms are vast and varied. They come and they go; they overlap other ailments; and they present in multiple. However, I suspect in all of those with this ‘syndrome,’ there is a commonality of symptoms that are unique,” stated one physician reader who, along with many others, believes that fibromyalgia is linked with numerous potential confounders, including pain, sleep disorders, psychiatric illnesses, and diet. Dormant viruses, trauma, stress, and the medical community’s recent culprit du jour — vitamin D deficiency — were also proposed.

So, Is It Depression?

One MD wrote, “I believe that fibromyalgia is, in most cases, a somatic presentation of anxiety or depression. It is real, with pain and inflammation in some cases. But I believe in its essence that it is a form of depression and anxiety in most cases.”

Other readers weren’t sold on the psychiatric theory. An MD cautioned, “Psychiatry does nothing to treat the cause of pain. To tell a patient with postherpetic pain to see a psychiatrist and not treat them for their pain would be ridiculous. Rather than dig deeper into the true depth and breadth of the illness, it’s much easier and cheaper to dismiss the patient with antidepressants with follow-up by a psychiatrist.” He cited a recent Canadian consensus document on fibromyalgia,[3] which states that fibromyalgia is not synonymous with mental illness, pointing out that many fibromyalgia symptoms are not common features of depression.

A cardiologist commenter recalled developing a fibromyalgia-like syndrome following a fall in which he hit his head: “I had no psychological triggers for this syndrome; the illness to me is dysfunction of the pain signaling system.”

What About Diet and Vitamin D Deficiency?

One anonymous commenter reminded the forum of evidence linking chronic pain and autoimmune conditions, such as fibromyalgia, with vitamin D deficiency[4-6]: “I’ve seen patients with fibromyalgia who turned out to be severely vitamin D deficient. Within a couple of months of starting a large-dose supplement (easy and inexpensive), their pain levels were significantly less.” A neurologist chimed in, “Give high doses of vitamin D a chance!”

Another physician wrote: “I know many with fibromyalgia who have wheat and dairy intolerance…; people with fibromyalgia, like people with chronic fatigue syndrome, develop these digestive tract symptoms. I have found that control of diet is critical for most people with fibromyalgia if they want to avoid diarrhea. I am not suggesting [that the condition] is caused by Helicobacter pylori, but the enteric microflora [might play a role].”

A neurologist pointed out the possible connection between digestive disease and neuropathy,[7] which again has been linked to fibromyalgia: “Celiac disease (CD) is increasingly recognized in North America and is associated with a peripheral neuropathy. Patients with CD may have a neuropathy involving small fibers, demonstrated by results of skin biopsy.” An MD responded, “Maybe celiac disease with peripheral neuropathy [is] the diagnosis instead of fibromyalgia.”.

How About Medications?

“Many times a medication is at fault. Check patients for previous uses of fluoroquinolones such as Cipro® [ciprofloxacin], Levaquin® [levofloxacin], Avelox® [moxifloxacin],” wrote one reader, prompting a family physician to concur, “A good doctor needs to rule out drug induced pain. For some patients diagnosed with fibromyalgia, a history of chronic use of benzodiazepines, Z drugs, and narcotics is associated with the development of tolerance and chronic pain….I have tapered many patients from these drugs and have found them able to recover from chronic pain.”

Things Heat Up: Why the Sexism?

Unfortunately, with chronic pain care can come extreme frustration and ill will toward patients, and a number of skeptical treaters weren’t afraid to share their, at times, strong opinions. “The [fibromyalgia] patient will describe her pain and suffering (with their eyes closed) with such a dramatic performance that it suggests an Academy Award nomination,” said one particularly forthcoming physician, adding, “Seeing just one of these unfortunate patients can surely ruin your day.”

Not surprisingly, such opinions drew displeased reactions. One reader responded, “As both a nurse and a 10-year sufferer of fibromyalgia, I find your comments appalling,” whereas many others pleaded for a civil discussion. Unfortunately, numerous readers believe that sexism still looms gray over fibromyalgia care.

A nurse commented, “I recently overheard a male rheumatologist telling a male colleague in front of a group of med students how he had tricked a female patient while examining her for trigger points on her back by touching them lightly without telling her or asking if she felt anything. He was proud of it. He was [also] saying that fibromyalgia was female hysteria [and] fictitious. I was appalled.” Still another justifiably irritated nurse reported having a fibromyalgia-like syndrome which her male doctor referred to as “tired housewife syndrome.”

A number of patients chimed in with less-than-positive recounts as well. One fibromyalgia sufferer wrote, “Some physicians have told me that it is all in my head, albeit in a degrading fashion.” Another patient pleaded, “The time has come for physicians to recognize these illnesses apart from the psychosomatic garbage that has been propagated,” whereas another added, “For those male physicians ridiculing patients, your disrespect may come back to haunt you. What will you do if/when an infectious agent is found to cause fibromyalgia? Remember when ulcers were caused by stress and not H pylori?”

Whether or not the mystery is solved anytime soon, hopefully whatever unfortunate misogyny does exist in the medical community will subside as our understanding of the condition improves.

Where Does This Leave Us?

Not surprisingly, in the end reader consensus was lacking. We were left with an assortment of theories, conflicting etiologies and symptoms, and severe brain drain from trying to piece it all together.

One reader wrote, “Sadly, as a result of reading this and comments, [I realize] we are nowhere near a clinical case definition [of fibromyalgia].” “This discussion has demonstrated the chasm between physicians and the patients themselves,” another reader added. Furthermore, “Physicians have expressed frustration. Patients with medical training have expressed equal frustration and disgust at some of the responses.”

On a slightly more optimistic note, one MD concluded, “[This discussion] shows that medicine is still an art rather than a science. Sometimes emphasizing what we don’t know helps us grow as clinicians.”

We agree; there is a bright side here. There are effective fibromyalgia therapies, albeit they are few in number. There’s a discourse, and there are researchers worldwide probing the complexities of this puzzling disorder. Hopefully somewhere in this web of pain, sleep, diets, and deficiencies there’s an answer.

 

Bret Stetka, MD

Editorial Director, Medscape Features Group

Disclosure: Bret Stetka, MD, has disclosed no relevant financial relationships.

References

  1. Blanco I, Béitze N, Argülles M, et al. Abnormal overexpression of mastocytes in skin biopsies of fibromyalgia patients. Clin Rheumatol. 2010;29:1403-1412. Epub 2010 Apr 30.
  2. Uceyler N, Kewenig S, Zeller J, et al. Fibromyalgia syndrome is associated with small fiber impairment and altered cortical activity. Program and abstracts of the International Association for the Study of Pain Annual Meeting; August 29-September 2, 2010; Montreal, Quebec, Canada. Abstract PW093.
  3. Carruthers BM, van de Sande MI. Fibromyalgia Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners: An Overview of the Canadian Consensus Document. Binghamton, NY: Haworth Medical Press Inc.; 2005. Available at: http://www.sacfs.asn.au/download/consensus_overview_fms.pdf Accessed February 18, 2011.
  4. Turner MK, Hooten WM, Schmidt JE, et al. Prevalence and clinical correlates of vitamin D inadequacy among patients with chronic pain. Pain Med. 2008;9:979-984. Epub 2008 Mar 11.
  5. Blaney GP, Albert PJ, Proal AD. Vitamin D metabolites as clinical markers in autoimmune and chronic disease. Ann N Y Acad Sci. 2009;1173:384-390. Abstract
  6. Mouyis M, Ostor AJ, Crisp AJ, et al. Hypovitaminosis D among rheumatology outpatients in clinical practice. Rheumatology (Oxford). 2008;47:1348-1351. Epub 2008 May 22.
  7. Brannagan TH III, Hays AP, Chin SS, et al. Small-fiber neuropathy/neuronopathy associated with celiac disease: skin biopsy findings. Arch Neurol. 2005;62:1574-1578. Abstract

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