HYPERMOBILE (Sounds Like a Super-Power!)

It appears that joint hypermobility may play a part in causing the pain of FM.

An Israeli study looked at 338 children (179 boys, 159 girls; mean age 11.5 years, range 9-15 years). Of the 338 children, (and according to the 1990 American College of Rheumatology criteria for the diagnosis of FM) 21 (6%) were found to have FM; 43 (13%) joint hypermobility; 17 (81%) of the 21 with FM had joint hypermobility and 17 (40%) of the 43 with joint hypermobility had FM. (The blind assessment of joint hypermobility and FM were carried out independently.)

4573321162This study suggests that there is a strong association between joint hypermobility and FM in schoolchildren. It is possible that joint hypermobility may play a significant part in causing our pain. These results could lead to earlier diagnoses and much quicker treatment for all FM sufferers.

But as always, the researchers have said that more studies are needed to establish the clinical significance of these observations.

Man Undiagnosed

More research is needed, particularly on why men who reported FM symptoms were less likely than women to receive a FM diagnosis, says lead author of a recent study, Ann Vincent, M.D., medical director of Mayo Clinic‘s Fibromyalgia and Chronic Fatigue Clinic. “Health care providers may not think of this diagnosis when face to face with a male patient with musculoskeletal pain and fatigue,” Dr. Vincent says. “These findings need to be explored further.”

Researchers focused on Olmsted County, Minn., home to the comprehensive medical records pool known as the Rochester Epidemiology Project, and used two methods to try to discover the number of people over age 21 with FM.

To the best of my knowledge, this is the first report of the rate at which FM is being diagnosed (or undiagnosed) in a community. This is also the first report of prevalence as assessed by the FM research survey criteria.

Firstly, they used the epidemiology project to identify just over 3,000 patients who looked like they might have FM: only a third had a documented FM diagnosis. That amounted to 1.1 per cent of the county’s population 21 and older.

In the second method, researchers randomly surveyed Olmsted County adults using the American College of Rheumatology‘s fibromyalgia research survey criteria. The criteria include the hallmarks of FM: widespread pain and tenderness, fatigue, feeling unrested after waking, problems with memory or thinking clearly and depression or anxiety, among other symptoms. Of the 830 who responded to the survey, 44, or 5.3 per cent, met those criteria, but only a dozen had been diagnosed with FM.

Based on the study’s findings, the researchers estimate that 6.4 per cent of people 21 and older in Olmsted County have FM—far more than have been officially diagnosed with it.

fibrommaleThe study found that the discrepancy between the number of people reporting FM symptoms and the number actually diagnosed with the condition was greatest among men. Twenty times more men appeared to have FM based on their survey response than had been diagnosed, while three times more women reported FM symptoms than were diagnosed.

“It is important to diagnose fibromyalgia because we have effective treatments for the disorder,” says co-author Daniel Clauw, M.D., director of the University of Michigan Health System Chronic Pain & Fatigue Research Center. Do we?

 

 

Working Girls

Sorry guys, but this is another study about women only (it probably can be associated to men quite successfully though).  Women with FM have great difficulty in managing a work life with their condition. Some women (like me) cannot work at all in their chosen profession: who wants a lawyer with fibro fog? Some work part-time and some struggle to work full-time. Reported work ability in women with FM varies from 34 to 77 per cent in studies from different countries.1

The factors which affect the ability to work in women with FM include pain, fatigue, impaired physical capacity and activity limitations. However, it is difficult to define to which extent symptom severity can be compatible with work.

A cross-sectional study of 129 women of working age with FM was categorized as working or non working. The average age of participants was 45.7 years, with an average of 10.5 years worth of symptoms. According to the American College of Rheumatology criteria, the average number of tender points was 14.8.

The main finding in this study was that working women (WW) displayed better ratings than non working women (NWW) in terms of pain, fatigue, stiffness, depression, disease specific health status and physical health related quality of life, which represent body functions and overall health status!

  • Physical capacity did not differ significantly between WW and NWW in terms of performance-based tests, where both groups showed lower capacity than the average population.
  • The number of pain localizations was significantly lower in WW than in NWW and global pain was significantly milder in WW than in NWW. The average pain of WW was well above 50 (0–100), which corresponds to the average pain level in previous studies of FM – this is measured using the Fibromyalgia Impact Questionnaire (a disease specific measure and comprises ten subscales of disabilities and symptoms ranging from 0 to 100). The average NWW pain was above 75 (0–100), which corresponds to the ratings of severely afflicted patients with FM. The results indicate that women with FM having moderate pain generally could be expected to work. Some women appear to be able to work despite severe pain, which raises the question if there are workplace related factors that support their ability to work. As such, the influence of work related factors on work ability in FM need to be studied further – it was not covered in this study.
  • 2011-04-20_Working-9-to-5 Global fatigue was found to be significantly lower in WW than in NWW as well as physical fatigue, reduced activity, and mental fatigue. Fatigue has previously been found to be an important factor for work disability; however, these results showed severe global fatigue with ratings of over 70 also in WW, indicating that fatigue might not be a critical factor for work disability.
  • Depression was rated significantly lower in WW than in NWW.
  • WW displayed a significantly better disease specific health status than NWW.
  • Physical health-related quality of life was significantly higher in WW than in NWW; however, the quality of life of workers in this study was very low as compared to a national sample.

The theory of the healthy worker effect suggests that healthier individuals are more likely to remain in the workforce BUT a limitation of this study is the cross-sectional design which does not allow analyses of cause and effect; that is: does working make women with FM healthier, or do healthier women with FM work?

  1. Henriksson CM, Liedberg GM, Gerdle B:  Women with Fibromyalgia: Work and Rehabilitation. Disabil Rehabil 2005, 27(12):685–695.

 

Research Mad!

Not even doctors completely understand FM.

FM is frustrating for us and doctors alike; the condition is hard to diagnose and treat – and many doctors don’t even believe it’s real.

But new research on brain chemistry, better diagnosis methods and mind-based therapies, such as cognitive behavior therapy, are changing doctors’ attitudes and offering renewed hope for relief among all of us.

“Not only are we doing a better job at educating physicians in how to diagnose fibromyalgia, but new research [also] is helping us better understand the disorder’s effects on the body,” says Stuart Silverman, M.D., a clinical professor in medicine and rheumatology at UCLA.

The studies give credibility to FM as a real syndrome, while also uncovering new ways to reduce the intensity of symptoms and cope with the ones you’ve got.

Here’s how the latest research can help us:

1. You can learn to reduce pain.

A mind-body therapy called ‘affective self-awareness’ may offer relief, according to a 2010 Providence Hospital study published in the Journal of General Internal Medicine.

In the study, 45 women with FM learned techniques – such as mindfulness meditation and writing about their feelings – to recognize and deal with emotions that could exacerbate pain. They were also encouraged to resume any exercise or activity they avoided due to discomfort. In six months, 46% had pain reduced by 30% or more.

How it may help: “We’ve learned that the hypersensitivity of nerve pathways in FM patients is a ‘learned pain,’” says Howard Schubiner, M.D., director of the Mind-Body Medicine Center at Providence Hospital in Southfield, Mich., who worked on the study. That means pain can get worse when you expect to feel it.

“We also know there’s a link between FM and stressful life events and in coping with strong emotions,” Schubiner adds.

Practicing self-awareness can help you face feelings and gain a sense of control over improving your health. Some hospitals offer seminars in mindfulness and other mind-body techniques. Ask your doctor for a referral.

2. Cognitive behavioral therapy (CBT) may ease FM symptoms.

A 2010 research review published in the Journal of Rheumatology found that CBT helps patients cope with pain, improves depressed moods and reduces the number of follow-up doctor visits.

And in a separate 2010 study, published in Arthritis Care & Research, two-thirds of high-risk FM patients who received a combination of CBT and physical therapy had “clinically significant” improvements in their well-being.

How it may help: CBT teaches people to examine and change their thinking to deal with life’s challenges. For FM patients, it may reduce depression and anxiety often triggered by symptoms.

One successful method is “reframing,” in which you learn to replace negative, hopeless thoughts with positive ones.

It can help you realize that even if you have aches today, “it doesn’t mean you’ll be in pain tomorrow too,” Silverman says. “The next few days can be better.”

3. A medication awaiting Food and Drug Administration (FDA) approval could improve sleep and reduce pain.

A 2010 University of Toronto study found that sodium oxybate, a central-nervous-system depressant produced by Jazz Pharmaceuticals, improved sleep in FM patients.

As a result, 44% of those who took it reported pain reduction of 50% or more. They also were less tired and had more energy during the day than those who took placebos. BUT while the FDA has approved sodium oxybate to treat narcolepsy, its future as a FM treatment is in doubt. Also known as gamma-hydroxybutyrate (GHB), the compound is regulated strictly because it’s often abused as a “club drug” or date rape drug.

Citing safety concerns, an advisory panel recently voted against recommending it for FM patients. The FDA is expected to make a final decision by October.

How it may help: “In people with fibromyalgia, if you can improve their sleep, data shows you can also reduce their pain,” Silverman says. “If you get a good night’s sleep you’re in a better mood. You’re thinking better.”

4. Doctors have a better way to diagnose FM.

The American College of Rheumatology (ACR) has proposed broader criteria for diagnosing FM. Previously, doctors focused solely on 18 spots on the body that feel tender and painful when touched.

“Physicians sometimes didn’t check the tender points or, if they did, they weren’t always sure how hard to press,” says Robert S. Katz, M.D., a rheumatologist and professor of medicine at Rush University Medical Center in Chicago.

Also, FM pain may fluctuate, and the tender-points test didn’t measure the effectiveness of medication.

How it may help: The ACR’s new rules include an evaluation of other symptoms, including fatigue, sleep disturbances and cognitive problems.

“The new test makes it easier for physicians to diagnose FM and begin treatment,” Katz says.

5. Certain brain activity has been linked to increased pain in FM patients.

Doctors at Massachusetts General Hospital and the University of Michigan have found a link between resting brain activity and FM pain.

In a 2010 study of 36 women, those with FM had more neural connections between various brain networks and the insular cortex, which is linked with pain processing. That higher sensitivity in the brain’s “pain matrix” can help explain FM symptoms, Silverman says.

“If you lightly tap your thumb, this area of the brain would hardly register anything if you don’t have FM,” he says. “For those with FM, this part of the brain lights up like a Christmas tree.”

How it may help: The study provides more evidence that FM patients have different brain physiology, says lead researcher Vitaly Napadow, Ph.D., an assistant professor in radiology at Harvard Medical School.

“This research may help patients by better defining the specific brain regions affected by FM,” Napadow says. “The more we know about why patients experience pain, the more we can tailor treatment to combat it.”

6. Changes in brain chemistry have been linked to FM symptoms.

In 2010, University of Michigan researchers found a significantly higher amount of glutamate, a neurotransmitter associated with increased pain levels, in the brains of FM patients. Research suggests these changes may be partially responsible for pain and depression.

How it may help: Changes in brain chemistry may explain why pain is amplified in FM patients, Silverman says.

Fibromyalgia is central pain, not peripheral,” he says. “You may feel pain in your leg, but [it’s] coming from your brain, which overreacts.”

Medications can reduce the pain volume control in FM patients.

“Since studies such as this one link changes in the brain to FM, they may [lead to] the development of more precisely targeted medicines and treatments,” Silverman adds.

See? They are trying…

 

The (Coffee) Spoon Theory

We all know that I have some really bad addictions: smoking and sugar. One habit I have never gotten into (mainly because I hate hot drinks) is caffeine. And new research, presented at the recent annual meeting of the American Pain Society, has found a link between caffeine consumption and the severity of FM pain.

Luckily (for some of you), low to moderate intake showed little to no association with pain severity, BUT the news is not as good for those individuals who live at their local Starbucks.

“There is a weak but significant relationship between caffeine consumption and pain severity in fibromyalgia patients,” said lead investigator Steven E. Harte, PhD, a research investigator in the Chronic Pain and Fatigue Research Center, Department of Anesthesiology, University of Michigan Health System, in Ann Arbor. “According to our data, there is almost no association between pain and low to moderate caffeine consumption.”

Very few previous studies have looked at high levels of caffeine and chronic pain severity.

This study included 252 patients who met the American College of Rheumatology’s criteria for fibromyalgia. Low caffeine consumption was considered to be 0.25-1.5 cups per day; moderate equalled 2-3.5 cups per day; and high consumption was more than 4 cups per day.  FM patients in the high caffeine-intake group reporting significantly greater pain levels than individuals in the low caffeine-intake group. No difference was seen between low and moderate caffeine consumption.

“This association appears to be driven primarily by those patients drinking eight or more cups of caffeinated beverages a day,” said Dr. Harte. “Thus, like most things, moderation is key when it comes to caffeine consumption.”

However, he also noted that it is possible that patients with worse FM pain and related symptoms (e.g., fatigue and cognitive deficits) “may consume more caffeine … to reduce these symptoms.”

There was no reference to how much sugar each person added to their coffee!

 

Happy FibroMAGIC Awareness Day

May 12th was chosen as International Fibromyalgia Awareness Day as it is the birthday of Florence Nightingale. She was believed to have suffered from Fibromyalgia.

Florence Nightingale, an English army nurse during the Crimean War (1854-1856), was a pioneer in the International Red Cross Movement. Nightingale became ill while working on the front lines and never really recovered. She was virtually bedridden much of the rest of her life with pain and fatigue resembling fibromyalgia until her death in 1910.

Although the term FIBROMYALGIA was not coined until 1976, throughout history people have reported illnesses with strikingly similar symptoms. These reports can be found as far back as Old Testament Biblical times:

I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?’ But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones. (Job 7:3-4; 30:16-17 – NLT)

This mysterious illness has been studied since the 1800’s and has been identified by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. The term “fibromyalgia” derives from new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; thus the term literally means “muscle and connective tissue pain”

MILESTONES IN FIBROMYALGIC HISTORY

  • 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
  • 1816 – Dr. William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
  • 1824 – Dr. Balfour described tender points.
  • 1904 – Sir William Gowers coined the term fibrositis (literally meaning inflammation of fibers) to denote the tender points found in patients with muscular rheumatism.
  • 1972 – Dr. Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
  • 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
  • 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
  • 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
  • 1987 – The American Medical Association  recognized fibromyalgia as a real physical condition.
  • 1990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes.  The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
  • 1990s – The concept of neurohormonal mechanisms with central sensitization was developed.
  • 2007 – The U.S. Food and Drug Administration approved the drug Lyrica for the treatment of fibromyalgia.  This was the first drug ever to receive FDA approval for fibromyalgia.  (Since then, two additional medications – Cymbalta and Savella – have also received FDA approval for the treatment of FM.)

Over the years there have been a multitude of theories as to what fibromyalgia is and what causes it. As the term fibromyalgia implies, it was logically thought to be a muscle disease, since muscle pain seemed to be the primary symptom. However, research studies could find nothing wrong with the muscles. For a while, it was theorised that it might be an autoimmune disorder, but once again research revealed no disturbance of the immune system.

Sadly, as often happens when medical science cannot identify an illness using standard technology of the day, for most of the past 200 years fibromyalgia was thought to be a psychiatric or psychosomatic disorder. Even today, there are a few (many?) medical professionals who insist on hanging on to this theory.

Fortunately, the 21st century has brought new laboratory tests and brain-imaging technology that has not only proven fibromyalgia to be a real physical disorder, but has also shown that it is caused by a malfunction of the central nervous system. As a result of these discoveries, new, more effective treatments are on the horizon (Bring it on!)

Hopefully, one day the history of fibromyalgia will be just that –– past history.