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…


Got Morning Stiffness?

When asked, most of us would say that the most debilitating symptoms of FM are pain, fatigue, and sleep disturbances. For me, the next one is stiffness – and who wouldn’t complain about waking up each morning to a body that feels like the final stages of rigor mortis?

But most doctors generally regard it as a minor symptom or a sign of inflammation unrelated to the fibromyalgia.

121. rise and shineWhen doctors think of stiffness, they conjure up rheumatoid arthritis and other inflammation-related joint diseases that make it harder for these patients to get going in the morning. Yet studies in FM patients also show stiffness is usually worse in the morning and “morning stiffness has been rated as more severe in fibromyalgia than rheumatoid arthritis,” says Robert Bennett, M.D. of Oregon Health and Science University in Portland. He says people with both conditions have worse stiffness than those with FM alone. But why would FM patients be troubled by stiffness?

As people age, they get arthritis, become less active, and expect a little morning stiffness. However, this does not explain why a 25 or 45-year-old FM sufferer would show signs of joint stiffness on a test involving the ankle. Needless to say, FM patients showed twice as much stiffness as age-matched healthy controls.

Stiffness sometimes correlates with pain, which means that the drugs used to treat our pain should help with the stiffness – but, in a study supported by Eli Lilly, the use of Cymbalta only improved the symptom by a tiny 10%. This compares closely to the 13% benefit found in the trials of Lyrica.

If the pain of FM was solely related to the stiffness, the drugs should be able to produce significant improvement in this symptom. Yet they don’t.

Fibromyalgia is a messy multi-system condition. There is the central nervous system component involved in processing pain, an area all the drugs are supposed to work on (Cymbalta, Lyrica and Savella). There are trigger points and tender points, which cause serious pain and restrictive movement. In addition, you have to remember the circulatory system, and FM patients have increased arterial stiffness (but that’s a whole other post).

Your arteries should be flexible, but studies show a reduction of the elastic-like qualities in us compared to age-matched controls. An overly active sympathetic nervous system is thought to be partly to blame.

Therapies to relax your sympathetic nerves, such as a hot shower and many other approaches, often ease morning stiffness. One of the three FDA-approved drugs may even help, but just don’t expect too much from them.


Sweet Dreams Ahead?

An investigational insomnia drug, known as suvorexant, is reportedly ‘a new class of drug’ that works in a different way than other sleep meds – and could be THE answer for many of us having difficulty falling asleep or staying asleep through the night.

According to the results of two “pivotal” Phase III effectiveness trials, revealed June 13 at the Associated Professional Sleep Societies annual meeting, suvorexant:

  • Targets insomnia in a different way than other drugs. It was developed to help facilitate sleep by targeting and blocking the actions of the orexins, chemical messengers that originate from the hypothalamus (an important sleep centre in the brain) and help to keep you awake and alert. By blocking the orexin receptors, suvorexant supposedly helps to facilitate sleep.
  • Significantly reduced the time it took insomnia patients to fall asleep and increased the time they stayed asleep as early as the first night and at the three-month time point, compared to placebo.
  • Produced no serious observed drug-related adverse events in either trial with any dose of suvorexant. Reports of next day residual effects on memory, attention, perceptual & motor speed, etc. were not significantly more frequent in treated subjects vs. those given placebo.

Merck plans to file a New Drug Application (NDA) for suvorexant with the US FDA in later this year. If approved, it would be the first medicine approved in the new class of medicines – called ‘orexin receptor antagonists,’ for use in patients with difficulty falling or staying asleep. If approved, it could be your dream come true!

Fibro Misconceptions

Fibromyalgia is a widely misunderstood condition. If you’ve been diagnosed with fibromyalgia and are trying to learn all you can about the condition, you may come across some myths and misconceptions about fibromyalgia.

Connie Luedtke, R.N

Here, Connie Luedtke, R.N., the nursing supervisor of the Fibromyalgia and Chronic Fatigue Clinic at Mayo Clinic, Rochester, Minn., answers questions about some of the most common misconceptions about fibromyalgia.

What is the most common misconception about fibromyalgia?
The top misconception is that people think fibromyalgia isn’t a real medical problem or that it is “all in your head.” It’s sometimes thought of as a “garbage-can diagnosis” — if doctors can’t find anything else wrong with you, they say you have fibromyalgia. Being diagnosed with fibromyalgia does require that you meet specific criteria, including painful tender points above and below the waist on both sides of the body.

There’s a lot that’s unknown about fibromyalgia, but researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently; they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem.

Why does this misconception persist?
In our society, people tend to think that there is a cure or a fix for every medical problem. You go to the doctor, expecting he or she will fix whatever’s wrong with you with medication or surgery. It’s frustrating to people with fibromyalgia because the traditional treatment approach isn’t effective. And it’s also frustrating to health care providers because they want to help people. But there’s no easy fix. It takes lifestyle changes and small steps toward achieving wellness. It’s a process.

How have misconceptions about fibromyalgia changed over the years?
More people understand that fibromyalgia is a real problem, often because they know someone who has it — perhaps a sister or daughter or mother. Health care providers are seeing that people who have fibromyalgia can manage their symptoms with lifestyle changes to improve their overall functioning and quality of life. And there’s hope for the future.

Are people who have fibromyalgia more likely to try unproven remedies?
People who have any chronic disease that doesn’t respond to conventional treatment often turn to other types of remedies. People who have fibromyalgia tend to use more dietary supplements. Some people think that there’s a magic diet for fibromyalgia. They think that they should avoid refined flour and sugar, sugar substitutes, the caramel color in some soft drinks, or carbonated drinks in general. But there hasn’t been any research-based evidence demonstrating that any of these substances cause the symptoms, nor that removing these substances from your diet works to make the pain go away. There may be anecdotal evidence — people who say that something helps relieve their symptoms — but there’s no clearly identified problem foods or magical diet cure yet.

Is a placebo effect at work here?
The power of the mind is a real factor in pain perception. For example, studies have shown that anxiety that occurs in anticipation of pain is much more problematic than the pain experience itself. In that sense, the mind has a negative impact on symptoms.

Many of the people who come to our fibromyalgia clinic are perfectionists who have very high expectations for themselves; likewise they can’t adjust to more realistic expectations after they develop fibromyalgia symptoms. These people have difficulty learning to relax. They may push through the pain and keep doing activities to the point they crash and burn and need extra time to recover.

So the pain keeps reinforcing itself in a never-ending cycle. People report lower levels of pain when they can slow their heart rate by deep breathing and doing other relaxation techniques. In our clinic, we teach people about tools they can use to tap into what they have within their own power.

Can misconceptions about fibromyalgia be harmful?
If people with fibromyalgia believe there is no help for them, they’re going to stay stuck. Even if there isn’t a cure, there are treatments that can really improve their quality of life. When people learn they have fibromyalgia, they can go through the stages of grief and loss — including experiencing anger and attempts at bargaining. When they get to the peace of acceptance, that’s when they can realize there are limits to what medical technology can do. There’s no magic surgery or pill that can fix this. They need to recognize that it’s OK to ask for help with things and that it’s OK to give themselves time for exercise and relaxation each day. They need to make their own health a priority.

Men Get Fibro, Too!

Fibromyalgia can take years to diagnose—three to five years on average—but, if you’re a man, it can take even longer! It is common knowledge (at least, with us) that FM is diagnosed in 2% to 4% of the population but is about nine times more common in women than men.

The lower numbers mean that doctors are less likely to consider the diagnosis in the first place, and, what’s more, fibromyalgia may look slightly different in men than women. The condition may be milder in men, who may also have fewer symptoms. Some research has suggested that men tend to have less frequent flare-ups of their symptoms, which also are likely to last for shorter periods of time.

However, one Israeli study in 2000 found that men with fibromyalgia actually had more severe symptoms, decreased physical function, and lower quality of life than women the same age with fibromyalgia.

Part of the reason men are less likely to be diagnosed may be due to deeply ingrained social norms that teach men to hide their feelings, making them less likely to seek help for something that could be viewed as a weakness, like body pain. Doctors need to question their male patients about pain to get their patients to talk, because men are sometimes reluctant to talk about it.

Unfortunately, as we know, FM also still has a serious credibility problem. Even if men are willing to talk, not all doctors believe what they are hearing. In a 2007 survey, more than 25% of the 2,000 fibromyalgia patients questioned reported that their doctors did not view fibromyalgia as a ‘very legitimate’ disorder.

Fortunately, at least for patients in the US, the Food and Drug Administration’s approval of three drugs—Cymbalta, Lyrica, and Savella (Lyrica has not been approved by the PBS in Australia – I have no idea about other countries) —for FM has helped to bring the condition out of the closet, says Patrick Wood, MD, a member of the medical advisory board of the National Fibromyalgia Association. “With the release of recent medications, there’s been a greater orientation to the reality of this disorder and emphasis to make it something that’s treated as a legitimate condition.”

But in addition to disbelief and social norms, there are also some physical variations that make fibromyalgia different in men. The current guidelines for diagnosing fibromyalgia include feeling pain at 11 or more of 18 common tender points. But because the average woman is more sensitive to pain than the average man, women score higher on this diagnostic test and, therefore, meet the criteria for fibromyalgia more frequently than men, explains Daniel Clauw, MD, the director of the Chronic Pain and Fatigue Research Center at the University of Michigan, in Ann Arbor.

Dr Clauw supports the burgeoning movement to eliminate the tender points test from fibromyalgia diagnoses because of this bias toward women. “Using [tender points] criteria, fibromyalgia is about 95% female,” he says. “That will probably go down to about 65% because chronic, widespread pain is only about 1.5 times greater in women than in men.”

Another deviation may be chemical imbalances in the brain. Dr Wood suggests hormones may play a role. “With the dopamine system, in particular, there are gender differences as to how the brain responds to situations,” he says, pointing particularly to stress. “Estrogen is very excitatory to the central nervous system, [while] progesterone is very calming.” Greater attention to hormonal imbalances may lead to gender-specific treatment in the future, he adds.

However Dr Clauw is not convinced that estrogen is the culprit. “Pregnancy and menopause [cause great changes in estrogen] and neither of those are associated with changes in pain in women,” he says. “We simply don’t know why women have more pain than men.” Until the condition is more deeply understood, managing the pain is any patient’s best plan of attack.

Despite the gender imbalance, advice for thriving with fibromyalgia is gender neutral. Both men and women can benefit from the same advice.

Both men and women deserve to have their pain treated.

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”


  • 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.