There is good reason for people with FM to be insanely frustrated with having an invisible disability because this one is significantly more invisible... it is Still debated among doctors as to whether it exists or not. What it is really. Is it more than one condition? Is it psychological? Is it just made up? Is it neurological? You would think with all the evidence you wouldn't be foolish enough to say nothing is going on with these patient's brains and bodies... but you'd be wrong, there are still doctors debating this. And that is why there is still this insane stigma of having this syndrome.
That was in 2008... but Wolfe recently did a study claiming FM is a spectrum disorder.
Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate. Further, they warn that Lyrica’s side effects, which include severe weight gain, dizziness and edema, are very real, even if fibromyalgia is not.
But doctors who are skeptical of fibromyalgia say vague complaints of chronic pain do not add up to a disease. No biological tests exist to diagnose fibromyalgia, and the condition cannot be linked to any environmental or biological causes.
The diagnosis of fibromyalgia itself worsens the condition by encouraging people to think of themselves as sick and catalog their pain, said Dr. Nortin Hadler, a rheumatologist and professor of medicine at the University of North Carolina who has written extensively about fibromyalgia.
“These people live under a cloud,” he said. “And the more they seem to be around the medical establishment, the sicker they get.”
Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.
“Some of us in those days thought that we had actually identified a disease, which this clearly is not,” Dr. Wolfe said. “To make people ill, to give them an illness, was the wrong thing.”
In general, fibromyalgia patients complain not just of chronic pain but of many other symptoms, Dr. Wolfe said. A survey of 2,500 fibromyalgia patients published in 2007 by the National Fibromyalgia Association indicated that 63 percent reported suffering from back pain, 40 percent from chronic fatigue syndrome, and 30 percent from ringing in the ears, among other conditions. Many also reported that fibromyalgia interfered with their daily lives, with activities like walking or climbing stairs. Drug Approved. Disease real? New York Times 2008
"We found strong evidence that fibromyalgia is not a discrete -- yes or no -- disorder. Rather, the symptoms that characterize fibromyalgia exist in a continuum from none to very severe across all people in the population," lead author Wolfe told MedPage Today.Researchers suggest fibromyalgia is a spectrum disorder
"In those with fibromyalgia there is overwhelming polysymptomatic distress, with severe pain and severe symptoms of all sorts," Wolfe explained.
"One doesn't either have fibromyalgia or not have it," he added.
The publication in 2010 of revised diagnostic criteria for fibromyalgia, eliminating the requirement for tender points and emphasizing the importance of a wide variety of symptoms, made population-based studies of the condition more feasible.
Accordingly, Wolfe and colleagues identified a representative sample of 2,445 German adults who completed questionnaires on health, diet, education, and sociodemographics.
"The most important finding of the study is the idea that fibromyalgia is more of a dimensional disorder than a disease," said Brian Walitt, MD, of Georgetown University in Washington, who was not involved in the study.
"That's a very big departure from how people like to think about fibromyalgia," Walitt told MedPage Today.
Fibromyalgia was assessed on the summary polysymptomatic distress scale, as well as on the scale's individual components of the widespread pain index and the symptom severity score as established in the 2010 criteria.
Those revised criteria required patients to have a score of 7 or higher on the widespread pain index and a symptom severity score of 5 or higher, or a pain index score between 3 and 6 and a symptom severity score of 9 or higher. Either variation led to polysymptomatic distress scores of 12 or higher.
The researchers found that the prevalence of fibromyalgia increased significantly with age, being 0.8% in adults younger than 40, rising to 2.5% for those between 40 and 60 and then to 3% for those older than 60 (P=0.004).
The summary polysymptomatic distress score rose by 0.59 units for each decade of life, while the symptom severity score increased by 0.14 units and the widespread pain index rose by 0.45 units.
The widespread belief that women are more commonly afflicted was not borne out, since the prevalence was similar in women and men, at 2.4% and 1.8%, respectively (P=0.372).
In clinical practice before the revised diagnostic criteria were implemented, up to 90% of patients with fibromyalgia have been women, which may have related to their greater likelihood for having tender points and possibly for seeking medical care for these concerns, the researchers observed.
The analysis also identified a strong correlation (r=0.790) between polysymptomatic distress scores and scores on a somatic symptom questionnaire that reflects how severely a person is distressed by symptoms such as fatigue, unrefreshing sleep, and gastric discomfort.
This was shown by the finding that for a diagnosis of fibromyalgia, the area under the receiver operating curve for the polysymptomatic distress score was 0.996 and was similar, at 0.973, for the somatic symptom score, according to the researchers.
Overall, 53.8% of individuals with fibromyalgia had one or more severe somatic symptoms, while 32.7% had two or more, and 38.5% would qualify as having a physical symptom disorder in the proposed DSM-V.Fibromyalgia not one size fits all disorder
Some Researchers Contend Fibromyalgia Is a Spectrum Disorder
Honestly I don't know what to say about his whole spectrum disorder issue. I get we vary in symptoms and in disability. However, we, ourselves vary over time... I was far different when I was younger than now... especially when you consider our tendency to add in comorbids. And... likewise, sometimes in my life the change in symptoms took me a bit to adapt in coping... so sorry it took an adjustment period and my distress varied... but overall I respond the same to my FM it hasn't become more psychologically burdensome to me. Anyway if you take these freeze frame snap shots of us and line them up it might be seen as a spectrum... but if you put in motion, so does each and every individual as the condition changes over time. Lots of conditions could be viewed like this... is Lupus a spectrum disorder too? Seems bull crappy to me. I have questions upon questions about his whole study frankly.
What is most disturbing to me by far is that by his calculations, and I must specify that, because I've seen that not everyone is too keen on how he came up with this... 38.5% would qualify as having "physical symptom disorder in the proposed DSM-V" Like we didn't see some skeptical researcher grabbing onto that card and waving it around. Like it isn't Deja Vu all over again with a new special label. But people listen to this sort of thing. And this sort of thing takes away from research. I just hope people listen more to the excellent research that has been going on lately than going back to the stone age of FM hell with this sort of thing. And if you don't know what I'm talking about read here Fibromyalgia and chronic pain in danger of being labeled a mental disorder This is the reason why when I have not particularly gotten treatment for FM I have not particularly fought for it... the stigma with it is still there and going strong even in the medical field.
Well this is what he actually says about it to help clarify it, sort of. Fibromyalgia: an interview with Dr Frederick Wolfe, University of Kansas School of Medicine " In fibromyalgia, studies have shown that the symptoms of fibromyalgia exist on a continuum. From a little pain and a little distress: to a lot of pain and a lot of distress. In fact we call the measures that we use to diagnose fibromyalgia measures of polysymptomatic distress.
This is termed by the UK psychiatrist Simon Wesley who first described illnesses such as chronic fatigue syndrome and fibromyalgia being at the end of a continuum of polysymptomatic distress.
What do we mean by polysymptomatic? Many different symptoms. One might have headaches, but not have all of the symptoms of fibromyalgia.
To put it another way, people with fibromyalgia tend to have a lot of fatigue, a lot sleep disturbance and pain and symptoms and difficulty with thinking and functioning. So it isn’t just distress in one area, but it is polydistress.
You can think of polysymptomatic distress as a condition of humankind which represents both some people who have almost no symptoms and some people who have a major amount of symptoms.
Those who have studied fibromyalgia came up with a cut-point in which they said ‘this is sufficient symptoms to call it fibromyalgia and less than that is not sufficient’.
Although this may be helpful in the clinic, it is scientifically useless because we exist as a continuum." Anyway worth reading the interview as an entire whole. I question this spectrum disorder idea. I question a great deal this whole fibromyalgia measures of polysymptomatic distress. However the interview does add clarity to his concepts.