Exercise is often prescribed for people with fibromyalgia, but it should not take the place of medications. Yet, once your medications begin to ease your symptoms, you may be wondering: “What form of exercise is best and how do I get started?”

If you start with five-minute walks and build up to 90 minutes per week over a four-month period, what can this do for your fibromyalgia? Or, perhaps you just work up to 40 minutes of walking and add 50 minutes of strength training (beginning with very little weight or resistance), will this combo program reduce your fibromyalgia symptoms better than simply walking? And, what about the benefits of an educational course that teaches fibromyalgia patients self-management techniques? Can improved coping skills from a self-help class lead to greater symptom relief? Better yet, what about the impact of a self-help course plus an exercise program?

These questions were answered in a study by Don Goldenberg, M.D., and colleagues in Boston, which involved four groups of women with fibromyalgia that went through four months of formal training.*

• The first group walked on a treadmill twice a week.
• The second group also walked on the treadmill and incorporated six strength training exercises (beginning with six repetitions at using very low weights on fitness equipment).
• The third group met seven times for a self-management course that lasted two hours per class.
• The fourth group consisted of the same exercises performed in group two (the combo program) plus the self-management course.

All exercise groups performed flexibility movements (such as stretches) for a few minutes each session.

If you are wondering whether you need to purchase a treadmill or a membership to an athletic club to gain access to the strength training equipment, the answer is NO. The walking group reaped about as many symptom benefits as the combo exercise group, and one does not need a treadmill to walk (just supportive shoes). The most significant improvements were in pain (30% decrease), fatigue, mood, and physical function. The fourth group, which also attended the self-management course, were more likely to maintain the benefits of exercise when evaluated six months after the discontinuation of the formal exercise sessions. Yet, education/coping assistance by itself did not lead to symptom relief.

The authors of the study concluded, “we believe that these data provide sufficient evidence to encourage health care professionals to recommend a program of progressive walking and flexibility with or without a moderate strength training to their patients with fibromyalgia.” However, remember that all participants were already being actively treated with medications for their symptoms and fibromyalgia was their primary medical condition. Also, everyone started with only five minutes of walking twice weekly. If this is too much for you or you are not able to progress to 90 minutes of walking per week, ask your doctor for help with a referral to a physical therapist.

After you build up to 90 minutes per week of walking, try spicing up your exercise routine with other forms of gentle aerobic activity, such as bicycling, dancing, swimming, or at least finding a partner to walk with so that you do not get bored and discontinue your activity.

* Rooks D, et al. Arch Intern Med 167(20):2192-2200, 2007.

A team in Germany used brain electroencephalogram (EEG) activity as an objective measure of the amount of noxious signals bombarding the brain due to the painful muscles in the lower back. By recording EEG activity, the researchers were able to detect whether the pain processing load in the central nervous system declined with use of heat applied to the lower back. This is of particular interest for people with fibromyalgia because signals entering the central nervous system are amplified, leading to an enhanced pain state. Although medications that target this central nervous system pain are usually prescribed, side effects often limit the dose that fibromyalgia patients can tolerate.

Identifying nondrug therapies that are capable of reducing the noxious signals into the central nervous system, but with little or no side effects, would greatly benefit people with fibromyalgia. Such therapies could be used in addition to medications to help tone down the pain.

The study consisted of two groups, each with 15 people complaining of low back pain. The control group received a bottle of a nonsteroidal anti-inflammatory drug (NSAID, such as ibuprofen) and were told they could take the medication for pain, if needed. The treatment group received four heat wraps, one to be worn each day for up to 8 hours during the next four consecutive days. In addition, this group also received the same NSAID with instructions that they may take it for pain, if needed. Subjects also completed questionnaires each day to evaluate pain, sleep, stress, work performance, and relaxation level.

All participants returned to the study center on day 2 and day 4 so that the researchers could measure their EEG activity. The amount of brain activity detected by the EEG at the highest end of the frequency range was tallied for each participant. Brain signals at the high frequency represent alerting and stressful stimuli, which is an objective measure of the relative degree of pain a person is experiencing. A drop in this value indicates that fewer noxious signals are entering a person’s central nervous system to produce pain.

Not only did the high frequency EEG values drop significantly for the heat wrap group, this objective reduction in pain occurred mostly during the first two days. Compared to the control group, the authors state, “the heat wrap therapy was more effective in reducing pain, decreasing stress at work, and increasing quality of sleep.”

Although people with fibromyalgia hurt all over, a patient’s most painful area can be the driving factor for determining a person’s overall pain level.² Applying heat to the region of most intense pain may not only “feel good,” it can also bring down your fibromyalgia pain to more tolerable levels. And, if the widespread pain is keeping you awake at night, take a long hot bath or shower just before bedtime (better yet, sit in a hot tub). For local pains, apply topical heat to the area during the day or at night (e.g., microwavable heat wraps, heating pads, or ThermaCare wraps by Procter and Gamble).

1. Kettermann B, et al. Clin J Pain 23(8):663-8, 2007.
2. Staud R, et al. Rheumatology 45(11):1409-15, 2006.

While in search for pain relief and treatment, patients often experience skepticism, credibility issues, rejection, or unfavorable encounters with doctors.¹ Patients say they feel stigmatized and report spending their strength struggling and quarreling with their doctors during consultations or visits.

On the other end, doctors are trained to manage clearly defined diseases so the uncertainty of diagnosing and treating fibromyalgia patients can challenge their professional identity. Often facing multiple symptoms associated with fibromyalgia, doctors are frustrated and tend to view patients as time-consuming, demanding, or emotionally draining.

Recognizing this disparity between patient needs and physician responses, researchers in Germany held a clinical trial that shows how doctor-patient relationships can improve with a little education and active participation (from both parties) when it comes to making medical decisions.²

For the study, researchers recruited doctors to undergo a shared decision-making (SDM) training course as their approach to treating fibromyalgia patients. The SDM splits the difference between a doctor making all the decisions or the doctor providing choices and allowing patients to select their treatment. After 12 hours of training in SDM, doctors in practice contribute their medical expertise on the causes of the disease, symptoms, treatment options, and outlooks. The patients participate by talking to the doctor about expectations, preferences, fears, experiences, values, and social circumstances. After negotiating possibilities, both the doctor and the patient create a plan of action together.

Sixty-seven fibromyalgia patients were recruited for the one-year study. All the patients participated in a computer-based, audio-visual information tool created by the research team that gave instruction on symptoms, diagnosis, treatment options, and prognosis. The tool was created to be used in doctors’ offices. The patients were then divided into two groups.

The first group was treated by physicians who had undergone the shared decision-making (SDM) training. The fibromyalgia patients in the second group, who also received the medical information, were treated by doctors not trained in SDM. Consultations were scheduled to provide each patient with an equal amount of time. A third, or control group of 44 fibromyalgia patients who received no special education were seen by physicians in a typical office visit.

Patients met with their physicians and completed questionnaires after an initial consultation, a three-month follow-up, and a one year follow-up.

Through the three visits during the year, the patients in the SDM group consistently reported the highest level of satisfaction, with the information group significantly second, and the control group even lower on the satisfaction scale.

The SDM doctors reported overall that their interactions with their fibromyalgia patients were less difficult compared to the other two doctor groups. While patients in the information and SDM groups both reported higher satisfaction with their doctors, only the SDM group patients could actually communicate why their interaction was better, stating they felt understood, listened to, and believed.

SDM doctors reported less negative feelings about their patients, more pleasant visits, and were able to describe their patients’ attitudes and conditions better. On the other hand, the medical information and control group doctors described patient visits as straining, and rarely as pleasant.

Even after one year of visits, patients in the SDM group reported more satisfaction with their doctor-patient relationship, said they were coping better, taking better care of themselves, and experiencing less frustration and disappointment when they actively participated in their treatment plan. Doctors also noted less friction and improved relationships with patients because they were able to explore their patients’ attitudes and beliefs, understand and redirect unrealistic expectations, and reduce patients’ stress.

The authors of the study comment that “physicians often feel they have nothing to offer fibromyalgia patients if they cannot offer them persistent pain reduction. With this in mind, the high patient satisfaction in the SDM group as a main result of our study becomes even more important. It seems indeed astonishing that patients are satisfied with their doctors despite an only marginal improvement in symptoms.”

How are your doctor-patient relationships? A survey done in the United States by Steven Feldman, M.D., Ph.D., of Wake Forest University, on patient satisfaction stated that patients may value technical expertise but are looking for more.³ “Perhaps it is not all that startling that patients value healthcare providers who take time to listen and work with them, care about them, support them in managing their healthcare, and make an effort to personalize patient care.”

1. Werner A, Malterud K, Soc Sci Med 57:1409-19, 2002.
2. Bieber C, Müller KG, et. al. Patient Educ Couns 63:357-366, 2006.
3. Feldman S, et. al. J Med Pract Manage 22(5):255-61, 2007.

A research team led by Robert Bennett, M.D., of the Oregon Health Sciences University, questioned 108 fibromyalgia patients on their perceptions of the attitudes of their past and current physicians. Bennett wanted to learn if a patient’s perception of how seriously their physician takes a diagnosis impacted the symptoms and severity of their disease.

The survey tools measured each patient’s symptom severity and how well patients felt their physicians understood their symptoms. The tools used also detected to what extent patients thought they could meet their physicians’ expectations when it came to managing and coping with their illness. Patients were asked to apply and rate statements regarding their past and current doctors on a scale from strongly disagree to strongly agree. For example:

• Sometimes my physician doesn’t understand how seriously ill I am, and,
• I feel hurt at times when my physician assumes that I can get better if I really wanted to.

Patients were then asked to evaluate how victimized they felt by their illness and rate how much control over their pain and fatigue they felt on a scale of 1 to 10. In the end, patients reported that their current physician took their illness much more seriously than past physicians. In addition, patients who believed their doctor took them seriously reported less fatigue and stiffness, woke up feeling more rested, had greater control over their pain, experienced less anxiety, and they felt better overall. This is a clear improvement over past physicians who perceived fibromyalgia as a serious illness because this caring attitude only led to reductions in anxiety, depression and victimization, but had no effect on the patient’s physical symptoms.

In contrast, patients who felt their doctor did not take their illness seriously reported higher levels of anxiety and none of the beneficial effects achieved by a caring doctor.

Summing up his project that was presented at the 2007 International MYOPAIN Society meeting in Washington, DC, Bennett writes: “Patients may improve both physically and psychologically under the care of a physician who takes their illness seriously, whereas a negative past attitude continues to adversely influence their psychological health.”

While this new research discussed above has not yet been published in medical journals, the researchers used the following references for their study:

Burckhardt CS, Clark SR, Bennett RM. J Rheumatology 18(5):728-34, 1991.

Hatchett L, Friend R, Symister P, Wadhwa N. J Pers Soc Psychol 73:560-73, 1997.

Bediako SM, Friend R. Ann Behav Med 28(3) 203-10, 2004.

In a previous study involving 35 fibromyalgia patients, Calandre found that 25-100 mg per night of Seroquel improved sleep, fatigue, stiffness, anxiety, and mood.² It also increased the number of days patients “felt good.” While the drug was well-tolerated (only five patients dropped out of the three month trial), Seroquel usually did not aid with the symptom of pain. For those patients still needing pain relief, Calandre included Lyrica as an add-on drug for 19 fibromyalgia patients with the goal of reducing pain.

“Lyrica augmentation of Seroquel therapy significantly improved pain and quality of life,” writes Calandre. The average dose of Lyrica needed by patients in this combo study was only 200 mg per day (taken as 100 mg capsules twice daily), which is less than half of the amount used in the Lyrica trials to provide effective pain relief.

This study was small and chances are that not all fibromyalgia patients will respond favorably to this combination. In fact, four people dropped out of the combo study because of drug side effects (even at low doses), and all patients were already on a stable dose of Seroquel before entering the study to add on Lyrica. Despite these limitations of the study, the authors suggest the combo of Lyrica plus Seroquel could benefit a subgroup of fibromyalgia patients, with each drug acting to reduce different symptoms in a complementary fashion.

Would the combination of Lyrica/Seroquel work better than either drug alone? Response to medications is hard to predict, but this could represent a good approach for some fibromyalgia patients. The key point of this study is to show that more than one drug may be used strategically in lower-than-normal doses to target your symptoms.

1. Calandre E, et al. Pharmacopsychiatry 40:68-71, 2007.
2. Calandre E, at al. Prog Neuro-Psychopharm & Biol Psych 31:71-7, 2007.

One year ago, pain specialist Jennifer Schneider, M.D., Ph.D., of Tucson, AZ, said, “These days I’m trying most of my fibromyalgia patients on Lyrica, and seeing highly variable results. Some complain that it makes them tired and dizzy, but others say it’s a miracle! For this reason, I believe it is worth giving everyone a trial of Lyrica.” However, Lyrica is not for everyone as the side effects can be difficult to manage.

Drowsiness and dizziness are the most common side effects. For some patients, these effects may quickly dissipate in a few days, while they may force others to discontinue the drug. Blurred vision (9%), weight gain (10%), and fluid retention in the arms and legs, called peripheral edema (8%), may also occur with Lyrica. Counseling patients about the potential for weight gain may head off this side effect. As for the edema, it can force patients to stop the medication, but one should not go off Lyrica abruptly because withdrawal symptoms are common.

Talking about the peripheral edema side effect at the American Pain Society (APS) meeting on May 2nd, Leslie Crofford, M.D., of the University of Kentucky, says, “This is a difficult to manage symptom that does not respond to diuretics. When it occurs, I have to tell patients that this is not the drug for them.”

A six-month blinded, placebo-controlled trial was presented by Crofford at the APS meeting to determine how long fibromyalgia patients maintained efficacy of the drug. Initially 1051 fibromyalgia patients were gradually dosed up on Lyrica during a six week period to determine who responded with a greater than 50% improvement in symptoms. Then the responders (566 patients) were divided into two groups. One group received the same dose of Lyrica that they had been taking for the past few weeks and the other group was placed on a placebo. None of the patients knew which group they were in.

Patients taking the placebo, after having a favorable response on Lyrica, quickly noticed an increase in symptoms. Two-thirds of the patients remaining on Lyrica continued to receive a good therapeutic response at the end of the six month trial. However, remember that only patients who demonstrated a favorable response to Lyrica (54%) were allowed into this six month trial.

In a separate study presented at the APS meeting, different doses were evaluated in 745 FMS patients. Doses of 300 mg to 450 mg/day were needed to reduce pain and improve function. Even at the lower dose of 300 mg/day, patients reaped significant benefits from improved sleep. If drowsiness side effects prohibit daytime use, Lyrica may still be beneficial if taken at night for sleep using a much lower dose.

Lyrica is the first drug to be tested in several large-scale treatment trials in patients with fibromyalgia. Many more medications are being investigated for use in FMS and will hopefully be FDA-approved soon.

A previous study showed that people that scored higher on the Ford Insomnia Response to Stress Test (FIRST) had more objective difficulty falling asleep in an overnight sleep lab … something so simple as an unfamiliar environment messed up their sleep.² The FIRST consists of a simple nine-item questionnaire that asks how likely a given situation (such as watching a frightening TV show or preparing for a vacation) will have on one’s ability to fall asleep that night.

Researchers at the Henry Ford Hospital in Detroit, MI, evaluated the impact of a low dose of caffeine (roughly two cups of coffee) in two healthy groups of subjects. One group in the “caffeine” study had a low score on the Ford Insomnia Response to Stress Test (FIRST) and the other had an elevated score on this test. Study participants were specially selected so that none of them had any difficulty falling asleep (each group took about 15 minutes to fall asleep), despite the differences in FIRST scores.

Then on a different night, subjects were given a caffeine pill one hour prior to their normal sleep time. People with low FIRST scores took only an additional five minutes to fall asleep (not significant), while people with high FIRST scores took over 60 minutes to fall asleep. In other words, the latter group exhibited insomnia when exposed to a relatively low dose of caffeine.

Based on the foregoing studies, the authors state, “… small but otherwise benign stimuli may trigger insomnia. This notion is consistent with the observation that some individuals (~22%) are unable to identify a specific stressor that they believe can account for the onset of their insomnia symptoms.”

If you take more than 20 minutes to fall asleep, you may not be able to identify a single factor as the cause. It could be that you are just more vulnerable to the sleep-disrupting effects of all forms of stimuli. You may be what people commonly refer to as a light sleeper. Solely omitting nighttime caffeine may not be enough. You may also need to maintain a rigid sleep schedule with a regular bedtime routine and make sure that you are sleeping in a comfortably supportive bed. Patients responding to Fibromyalgia Network’s 2004 survey rated this approach to sleep as the third most popular nondrug therapy.

1. Drake CL, et al. Sleep Medicine 7:567-72, 2006.
2. Drake CL, et al. Sleep 27(2):285-91, 2004.

Each year since 2001, the IACFS has recognized extraordinary individuals outside the field of research who have contributed substantially to those with chronic fatigue syndrome (CFS) or fibromyalgia (FM). This category may include advocates, leaders, practitioners, supporters, or any person who has lent special effort or talent to the field.

This year’s Special Service Award goes to a woman who has been tirelessly — and almost single-handedly — promoting FM and CFS research for about 20 years. She founded the Fibromyalgia Network in 1988 to provide news and current information to women and men with fibromyalgia. Working out of her own home, she developed a newsletter that has become the foremost source of fibromyalgia information for patients.

Beginning in 1991, Fibromyalgia Network started hosting informational booths at major medical conferences to spread the word about the legitimacy of FM and CFS to people in the health care field, most of whom were physicians. Then in 1993 she founded the American Fibromyalgia Syndrome Association (AFSA), a non-profit organization that raises funds and supports research in FM and CFS. Over the next 13 years Kristin Thorson raised almost $2 million, which has supported 30 different research projects. Remarkably, AFSA is rated as one of the most efficient charitable organizations in the United States because more than 90% of the donations go directly toward research.

You may recognize Kristin Thorson because she has attended virtually all of the IACFS Conferences. Kristin has worked closely with some of the best known names in our field including Bob Bennett, Jon Russell, our former board members Dan Clauw and Don Uslan, sleep expert Harvey Moldofsky, Dan Wallace, Richard Podell, Dan Peterson, Charles Lapp, and many others. It’s time that we give recognition to this woman who has given so much to us, and especially to patients with FM and CFS.

The International Association for CFS/ME (IACFS/ME) is a non-profit organization of research scientists, physicians, licensed medical healthcare professionals, and other individuals and institutions interested in promoting the stimulation, coordination, and exchange of ideas for CFS and ME research and patient care as well as periodic reviews of current clinical, research and treatment ideas on CFS/ME for the benefit of CFS/ME patients and others.

Barbara Loevinger, M.D., at the University of Wisconsin’s Center for Women’s Health & Research, recently studied this risk and determined a significant association between the occurrence of fibromyalgia and metabolic syndrome (MBS).¹ Elizabeth Maloney, Ph.D., of the Center for Disease Control in Atlanta, also found an association between chronic fatigue syndrome (CFS) and MBS.²

Some of the diagnostic parameters of metabolic syndrome are high levels of cholesterol and triglycerides, a larger-than-normal waistline, insulin resistance (type 2 diabetes), and elevated blood pressure. All of these signs are risk factors for developing cardiovascular disease.

With MBS, the elevated cholesterol and triglycerides contribute to high blood pressure, while the ability to use insulin to regulate glucose levels is impaired. The excess glucose is converted to fat (such as triglycerides) and typically gets stored around the midriff. Ironically, increased fat interferes with the muscle’s ability to use insulin to draw glucose into the cells, which could make it harder to exercise. A lack of activity further impairs the muscle’s ability to consume glucose. The result is decreased energy to the muscles, increased conversion of glucose to fat, elevated blood pressure, and a malfunctioning glucose or insulin resistance system.

For her study, Loevinger recruited 109 fibromyalgia patients and 46 controls. Weight and body mass index did not significantly differ between the women with fibromyalgia and the control group. The patients were “fairly high functioning” averaging 37 years of age.

She hypothesized that increased activation of the sympathetic nervous system and reduced adrenal function, which have both been documented in fibromyalgia patients, may set the stage for metabolic syndrome in women with fibromyalgia.

Loevinger found that women with fibromyalgia were 5.5 times more likely than healthy controls to have MBS. In fact, 20 percent of the fibromyalgia patients met the criteria for MBS. Looking at this subgroup of patients, Loevinger found that their sympathetic system was dominant while their adrenal output was weak compared to the fibromyalgia patients who did not meet the criteria for MBS.

Referring to her findings, Loevinger says that MBS in women with fibromyalgia was not due to increased weight or inactivity, and concluded, “fibromyalgia per se … may be a risk factor for MBS.”

1. Loevinger BL, et al. Metab Clin Exp 56:87-93, 2007.
2. Maloney E, et al. IACFS Research Conference, Ft Lauderdale, January 2007.

The ME stands for myalgic encephalopathy, meaning that the pain and other symptoms in the muscles (myalgic) are produced by an unspecified malfunctioning in the central nervous system (encephalopathy). Given that several brain imaging studies in patients with CFS (as well as FMS) have shown abnormal changes in brain blood flow and function, the addition of “ME” to the name is appropriate.

The sentiment of CFS patients 10 years ago was that a new name was needed for doctors to take them seriously.

At that time, Kristin Thorson, president of the Fibromyalgia Network and founder of the American Fibromyalgia Syndrome Association (AFSA), served as a patient representative on the government’s Chronic Fatigue Syndrome Coordinating Committee (CFSCC). She was asked to look into the issue of a name change for CFS. “Patients were rightfully clamoring that CFS was a meaningless and trivializing name,” Thorson said. “And they wanted to know what the medical community thought of a name change.”

Thorson sent out 2,700 surveys to physicians and researchers in the Fibromyalgia Network database and received 440 replies. The survey included six short questions about the name change, and one question about how they perceived FMS versus CFS in terms of therapy approaches. Here are some highlights of the 10-year-old survey:

• The responses from rheumatologists, family physicians, internists, and other medical specialties all tended to be the same.
• 38% said CFS was not an adequate name, while 54% said it was.
• 35% percent said the name should be changed, while 43% said NO.
• 75% said FMS and CFS were overlapping syndromes and this response was the same regardless of whether the physician was a rheumatologist or a family physician.
• The most frequent comment from the physicians regarding the name change was: “I’d go for it if we knew more about the etiology (cause).” Many expressed that the CFS name was derogatory and a much smaller number thought that the name described the syndrome well.

On the survey, Thorson also asked the physicians how they approached the treatment of fibromyalgia and chronic fatigue syndrome, two diagnostic labels that basically have the same set of symptoms.

“We discovered that the FMS-diagnosed patients were more likely to receive aggressive treatment for their symptoms, while CFS-diagnosed patients were more likely to be told to change their lifestyle and less likely to be prescribed medications,” said Thorson. “I am eager to see how the medical and research communities react to this recent name change. Hopefully it will finally provide patients with the respect and credibility they deserve.”