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FMS Community FMS Community Newsletter #96
Hello, and happy dog days of summer to those of us in the western hemisphere.
This issue of the newsletter will address current news items, and other events that may be pertinent to your daily life with FM and other conditions.
As always, the newsletter is by, and for those who live with FM and other conditions. If you know of something that we should feature here, please drop us a line at turnip@fmscommunity.org. We will get it into a future edition.
Jane Kohler-Lutz

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In This Edition:
~ Now Recruiting: A Fibromyalgia Pain Treatment Trial & A Global Fatigue Management Study

~ The Fibromyalgia Spectrum - Part of the Big Picture in Understanding Fibromyalgia

~ A Primer on Physical Therapy for Fibromyalgia Patients

~ Why Doesn't My Doctor Know This?

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Now Recruiting: A Fibromyalgia Pain Treatment Trial & A Global Fatigue Management Study 08-21-2007

Two new studies are calling for participants now:
A multi-center trial of electromagnetic "neuromodulation" therapy for Fibromyalgia pain And a web-based global study of fatigue in chronic illness.
1. Study of Low-Frequency Neuromodulation
Therapy in Adult Patients With Fibromyalgia

This randomized, placebo-controlled Phase III investigational trial will study the ability of a device involving delivery of specific, low-power electromagnetic pulses to reduce chronic musculoskeletal pain in Fibromyalgia patients. (?The theory of operation involves the modulation of key areas in the brain?where the pain is perceived?? according to the device?s maker.)

Secondary outcome measures will include mood alteration, sleep quality, physical function, and medication usage.

The study may last up to 20 weeks, and includes 8 clinic visits. To qualify for the study, participants must be at least 18 years old, have FM pain at least 6 months, and be able to stop all medications except aspirin and Tylenol. Qualifying participants will receive physical exams, blood tests, and compensation for time and travel expense.

The study (ClinicalTrials.gov # NCT0045095) is recruiting in at least 10 clinical centers in California, Florida, Minnesota, New York, North Carolina, Pennsylvania, and Washington State, and at 3 centers in Ontario, Canada.

For more details on the trial, trial sites, criteria for inclusion/exclusion, and contact information, go to http://www.clinicaltrials.gov/ct/show/NCT00450905

1. Beth Israel Medical Center, New York City
Lisa Shichijo, Clinical Research Coordinator
Department of Pain Medicine & Palliative Care
Phone 212-844-8533

National Pain Research Institute, Winter Park, Florida
Joan Cutillo, LPH, CCRC407-622-5766 extension 1420
Fax 561-372-0219

2. Online Study of Fatigue in Fibromyalgia,
CFS, & Other Chronic Illnesses

The Centre for Postgraduate Nursing at Otago University in New Zealand is conducting an international online study looking at fatigue in adults with Chronic Fatigue Syndrome, Fibromyalgia, depression, diabetes, cancer, and other chronic illnesses. People who are managing their fatigue or have recovered are invited to participate.

The objectives of ?The Nature and Management of Fatigue? research study are to gain a better understanding of fatigue across different chronic conditions, and of the strategies people are using to manage their fatigue - as a means of helping health professionals to develop useful intervention guidelines. The study includes a survey to collect information on the nature and management of your fatigue, and a page where you can offer a brief personal story - both at your discretion and all kept anonymous.

To learn more about the study, or to participate, go to http://www.fatiguestudy.org/index.cfm.

If you have questions about the study and its findings, contact fatigue.csmhs@otago.ac.nz

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The Fibromyalgia Spectrum - Part of the Big Picture in Understanding Fibromyalgia

by Mark J. Pellegrino, MD 08-04-2007

?Today I?m convinced Fibromyalgia is indeed a ?broader? condition with various subsets? - and a Fibromyalgia Spectrum model is helpful in organizing and educating patients, writes Dr. Mark J. Pellegrino, MD, a Fibromyalgia expert specialized in Physical Medicine and Rehabilitation.

This article ? excerpted with permission from Dr. Pellegrino?s highly praised and reader-friendly book, Fibromyalgia: Up Close and Personal* - explains the spectrum of conditions the doctor has observed in caring for more than 20,000 patients in his clinical practice. Dr. Pellegrino has been a Fibromyalgia patient himself since childhood.

As a senior resident at The Ohio State University in 1988, I gave a lecture on Fibromyalgia at the Physical Medicine Grand Rounds. One of my lecture slides was entitled ?Fibromyalgia, A Spectrum of Conditions?? I discussed how Fibromyalgia appears to be a ?broader? condition with specific subsets. Fibromyalgia was in that area between normal and disease ? the ?gray? area.

Some of the subsets were closer to normal, involving regional pain only, or milder symptoms without numerous associated conditions. Some subsets were closer to abnormal, with some features of connective tissue or rheumatic diseases, but were not quite ?there.?


Today I?m convinced Fibromyalgia is indeed a ?broader? condition with various subsets. I believe this information is helpful in explaining why everyone?s symptoms are different even though they all have Fibromyalgia. This chapter addresses how the Fibromyalgia spectrum is part of the big picture in understanding Fibromyalgia.

Fibromyalgia Is a Distinct Medical Entity, and ppropriately So

We have long recognized, however, that many conditions overlap it, and various conditions exist that can lead to secondary Fibromyalgia. Dr. Muhammad Yunus, MD, [a professor and FM specialist at the University of Illinois College of Medicine] has developed the concept of Dysregulation Spectrum Syndrome (DSS) to describe how conditions overlap.

Dr. Yunus describes DSS as representing various associated conditions that share similar clinical characteristics and pathologic mechanisms with Fibromyalgia. Ten conditions are in the DSS umbrella: Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, tension headaches, migraine headaches, primary dysmenorrhea, periodic limb movement disorder, restless leg syndrome, temporomandibular pain syndrome, and myofascial pain syndrome. He predicts other entities will be added to this list in the future.

According to Dr. Yunus, Conditions in DSS
Share a Number of Characteristics:

1. Patients with different conditions sharing similar profiles.

2. Common shared symptoms, such as pain, poor sleep, fatigue, and female predominance.

3. Hypersensitivity to pain.


4. No ?diagnostic? pathology that can be measured.


5. Shared psychological complaints such as depression and anxiety.


6. Shared common genetic factor likely.


7. Common neurohormonal dysfunctions.


8. Treatments directed at the central nervous system leading to improvement.


9. TMJ [temporomandibular joint] dysfunction.

I have discussed the Fibromyalgia spectrum with my patients to help them understand the various subsets possible. I do not see Fibromyalgia as a member of a bigger family, but as the main condition. It is the ?founding father? and keeps its name. If Fibromyalgia is the founding father, then the various overlapping conditions and subsets become the children. The name Fibromyalgia remains, but different subsets have unique characteristics and together they become the Fibromyalgia spectrum.

This diagram shows the concept of the Fibromyalgia spectrum. The Fibromyalgia entity partially overlaps with the normal entity on one side and the disease entity on the other side. Within the Fibromyalgia entity are 8 subsets. The first subset is in the most ?normal? portion of Fibromyalgia, and the 8th subset is in the most ?diseased? portion of Fibromyalgia. Each number represents a distinct subset with distinct characteristics.

The Eight Subsets of the Fibromyalgia Spectrum Are:

1. Predisposed state
2. Prodromal [preceding] state
3. Undiagnosed Fibromyalgia
4. Regional Fibromyalgia
5. Generalized Fibromyalgia
6. Fibromyalgia with particular associated conditions
7. Fibromyalgia with coexisting mild disease
8. Secondary Fibromyalgia reactive to disease.

An individual can move up this spectrum ? from a lower numbered subset to a higher numbered subset, but once in a particular subset, she/he does not return to a lower numbered subset. One can achieve a remission, but stays in that subset.

In other words, there is no going back. Let?s review the features of each subset.

Subset 1: Predisposed State

The individual is asymptomatic. Clinical Fibromyalgia is not present in this state.

The individual is at risk for developing Fibromyalgia due to hereditary factors, which may include one or both parents with Fibromyalgia or a rheumatic/connective tissue disease, or a sibling or first-degree relative with Fibromyalgia.

Subset 2: Prodromal State

Prodromal means preceding, or the state leading to the condition. Clinical Fibromyalgia is still not present. There is no widespread pain or painful tender points.

The individual is not asymptomatic, however. Associated conditions common with Fibromyalgia may be present in this stage, such as headaches, restless leg syndrome, fatigue, or irritable bowel syndrome. Pain may be present at times, but intermittently (not chronic, persistent pains). Even though the individual may have one or more associated condition(s), widespread persistent pain is not present, so therefore Fibromyalgia is not yet present.

Typical Fibromyalgia pain must be present before we can diagnose clinical Fibromyalgia, no matter how many associated conditions may be present, but those who have numerous associated conditions are at risk.

Subset 3: Undiagnosed Fibromyalgia

Chronic pain is now present, either regional or generalized in nature. This is the point of no return. The person has painful tender points which may or may not meet the American College of Rheumatology-defined 11 of 18 criteria.

The person in this stage usually has milder symptoms and has not yet seen a doctor or been officially diagnosed with Fibromyalgia. If this individual were to see a knowledgeable physician, that diagnosis would be made.

Subset 4: Regional Fibromyalgia

Individuals in this stage have been diagnosed with Fibromyalgia, but not generalized. Chronic pain is limited to one or a few areas such as the upper body or the low back. The symptoms may wax and wane.

Usually, this subset is triggered by a trauma. I believe myofascial pain syndrome is part of this regional Fibromyalgia, and both terms are essentially synonymous. Myofascial pain syndrome has become familiar through the work of the late Dr. Janet Travell, MD, and Dr. David Simons, MD.

Myofascial pain syndrome is defined by painful muscles and the presence of triggerpoints and taut bands of muscle fibers which are ropey and painful when palpated. An involuntary shortening of the fibrous muscle band can create a local twitch response.

Some of those who work with myofascial pain syndrome will argue that it is a separate distinct entity from Fibromyalgia. I disagree. The similarities between myofascial pain syndrome and Fibromyalgia are far greater than their differences. They both have trigger points, tender points, ropey muscles, sympathetic nerve dysfunction, ATP abnormalities, peripheral and central mechanisms, regional and generalized versions, and associated conditions. Sound familiar? The treatments are essentially the same.

As our clinical experience has evolved and our knowledge and research have become more refined, I think it is clear that myofascial pain syndrome is a part of the overall Fibromyalgia spectrum.

Individuals with regional Fibromyalgia, over time, often develop generalized Fibromyalgia. Or they can remain in this stage indefinitely. Identifying the regional stage early and treating it can definitely help to prevent progression.

Subset 5: Generalized Fibromyalgia

Individuals in this stage have widespread pain and tender points. They will usually meet the American College of Rheumatology-defined 11 of 18 criteria, but as previously explained, one can still have generalized Fibromyalgia with fewer tender points.

Various associated conditions seen with Fibromyalgia can be present ? sleep disorder, irritable bowel syndrome, depression, fatigue, and so on. These associated conditions are not taking on a life of their own, so to speak, but are part of the whole and managed with the overall Fibromyalgia treatment.

Regional Fibromyalgia can progress to this subset. Various causes of generalized Fibromyalgia include genetic factors, trauma, infections, and more, but secondary Fibromyalgia from a primary disease is not included in this subset.

Subset 6: Fibromyalgia with Particular Associated Conditions

People in this group have developed associated conditions that are giving them particular problems which appear as ?separate? entities requiring separate attention. Some of these particular associated conditions include irritable bowel syndrome, [Chronic Fatigue Syndrome], fatigue, tension/migraine headaches, and depression. None of these conditions in themselves have ?classic? disease laboratory markers or cause tissue destruction, yet they may require treatments in addition to the overall Fibromyalgia treatment.

Another associated condition is dysautonomia (dysfunction of the small nerves), which can cause abnormalities such as hypoglycemia [low blood sugar], hypotension [low blood pressure], cardiac arrhythmia, irritable bowel syndrome, and vascular headaches.

Subset 7: Fibromyalgia with Coexisting Disease

Individuals in this category have a specific disease, and also have Fibromyalgia. The disease doesn?t necessarily cause Fibromyalgia, but can aggravate it if it?s already present. Examples of diseases that can be present and worsen the Fibromyalgia symptoms include:

Hormonal problems (hypothyroidism, low estrogen, low growth hormone, and low cortisol)

Infectious problems (yeast, parasite or viral infections).

Low grade rheumatic or connective tissue disease (lupus, autoimmune disorders, dry eyes syndrome described by Dr. Don Goldenberg, MD, [Chief of Rheumatology at Newton-Wellesley Hospital and Professor of Medicine at Tufts University School of Medicine] may be part of a low grade Sjogren?s syndrome).

n Arthritic conditions (cervical spinal stenosis, osteoarthritis, osteoporosis, scoliosis).

n Neurological conditions (multiple sclerosis, polio sequelae, neuropathy, head injury residuals). For example, people who have both diabetes and Fibromyalgia will often have more painful Fibromyalgia because the diabetes caused the nerves to be more sensitive. Diabetes is a common cause of neuropathy, or damage to the small nerves, which is painful in itself and even more so with Fibromyalgia. One needs to keep the diabetes under good control to help the pain.

n Lung conditions. I see a number of people who have Fibromyalgia along with a lung problem such as emphysema, asthma, chronic bronchitis, or heavy tobacco use. Cigarette smoking can increase Fibromyalgia pain. The nicotine in the smoke causes constriction of the blood vessels, decreasing blood flow, oxygen, and nutrients to the muscles, thereby increasing pain and spasms. Also, carbon monoxide in smoke enters the bloodstream and binds to the hemoglobin molecules in the blood. this blocks oxygen from binding to the hemoglobin, further decreasing oxygen availability to the muscles (and increasing pain). Stop smoking and your muscles will feel better!

These diseases exist concurrently with Fibromyalgia but probably do not cause it. Any of these diseases can progress from a mild to a more severe state, and Fibromyalgia worsens as the disease worsens. The physician determines if the disease is coexisting with and aggravating Fibromyalgia (subset 7), or if a disease caused the Fibromyalgia (subset 8).

Subset 8: Secondary Fibromyalgia Reactive to Disease

Individuals in this category have secondary Fibromyalgia. They have a primary disease (for example lupus, rheumatoid arthritis) - and Fibromyalgia developed as a result of this disease.

People in this subset probably wouldn?t have Fibromyalgia if they never had the primary disease. The primary disease requires treatment, and Fibromyalgia may improve with this treatment. However, the Fibromyalgia often requires its own treatment, and can continue to be a major problem even when the primary disease is treated or is in remission.

Overall - A Useful Explanatory Model

I find that the Fibromyalgia spectrum provides a useful clinical model for me when evaluating and treating my patients. It helps me to ?organize? them better! When I diagnose Fibromyalgia, I try to be as specific as possible about what the cause is and what subset it fits. This helps me to better explain Fibromyalgia to the patients and to individualize their treatment programs.

Of course, if I?ve diagnosed Fibromyalgia it would be subset 4 or greater. The patient wouldn?t be seeking a medical consultation for subsets 3, 2, or 1. If possible, I note the cause. Each subset can have flare-ups or remissions within it, and I note that as well, if appropriate.

Subsets 1, 2, and 3 [predisposed state, prodromal state, undiagnosed Fibromyalgia] are useful in appreciating the progression of Fibromyalgia through the spectrum, and can be helpful when advising patients and family members who have specific concerns and questions.

Let?s Review Some Patient Profiles to Determine the
Subset they Fit into in the Fibromyalgia Spectrum


Patient #1
Mary is a 25-year-old receptionist with severe neck and shoulder pain. She had always been very active with aerobics and bicycling and had never had any pain requiring treatment until after a motor vehicle accident? when she was rear-ended and suffered a whiplash injury. The pain never went away, and when I saw her I found numerous painful tender points and trigger points with localized spasms in the neck and shoulder muscles.


Mary has regional Fibromyalgia (subset 4). She was most likely predisposed to Fibromyalgia, and a traumatic event triggered the development of her regional Fibromyalgia. She ?leaped? from predisposed state (subset 1) to regional Fibromyalgia (subset 4).


Patient #2
Martha is a 30-year-old housewife. She was diagnosed with Fibromyalgia 5 years ago, and she was at a stable baseline with her home program of stretches, exercises, and using a hot tub.


In the past year, she has been having increasing pain and fatigue, and difficulty managing her Fibromyalgia. She reports that in the past year she has been getting frequent yeast infections. She is on birth control pills and has had a couple of bladder infections requiring antibiotics in the past year. Her more recent history is otherwise unremarkable.


Martha has Fibromyalgia with a coexisting disease - chronic yeast infection (subset 7). Her birth control pills, antibiotic treatment, and perhaps Fibromyalgia have contributed to the chronic yeast infection. In turn, the yeast infection has aggravated her Fibromyalgia. [See also Dr. Pellegrino?s explanation of ?Candidiasis ? Yeast Infection and Nutritional Repair.? ]


Patient #3
Jamie is a 38-year-old school teacher. She has lupus, diagnosed when she was 13 years old, and has been on various medications since then.


She has been in remission for a number of years, but has developed widespread pain. Her sedimentation rate is not elevated to suggest active inflammation. Her clinical exam does not reveal any joint inflammation or active lupus findings, but she does have 16 of 18 painful tender points.


Jamie has secondary Fibromyalgia from a disease (subset 8). In her case, the lupus is in remission, but her Fibromyalgia is causing her problems and needs to be treated.


Patient #4
Jamie?s 12-year-old son has been complaining of leg pains. The pains occur at nighttime, and Jamie has to rub the legs and use warm compresses. The pediatrician told her his pains were growing pains. Jamie?s son gets occasional headaches, and sometimes he feels exhausted. He plays many sports, and if he works out a lot his muscles are very sore for several days. On exam, there are no areas of pain or painful tender points.


Jamie?s son is probably in a prodromal state (subset 2). He is at risk because his mother has Fibromyalgia and a connective tissue disease, and he has some associated conditions with intermittent pains, but has not developed the persistent widespread pain or painful tender points yet.


Patient #5
Bob is 42 years old and has an awful lot of pain for his age. His pains are more severe than everyday pain, and sometimes he has had to miss work. He is an assembly line worker. He mentions this to his primary care doctor when he is there for his yearly physical. He is examined and found to have 12 of 18 positive painful tender points.

Bob had undiagnosed Fibromyalgia (subset 3) until he became official, ?entering the books? with generalized Fibromyalgia (subset 5) after he saw his primary care doctor.

In Conclusion

There is much disagreement and controversy among medical professionals and patients about categories and subsets of Fibromyalgia or similar conditions. I'm not attempting to stir the waters with my version of the Fibromyalgia spectrum - rather I'm trying to help you understand the fairly complicated nature of the condition and the different types I see. I find this model useful and practical in my everyday clinical practice. Remember one of my mottos: Keep things as simple as possible and make sure they make sense!
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A Primer on Physical Therapy for Fibromyalgia Patients 8/25/07

This information is excerpted from the book we currently are offering in our drawing. Fibromyalgia: The Complete Guide from Medical Experts and Patients (May 2007, Jones and Bartlett), by Dr. Sharon Ostalecki, PhD.*

Loren DeVinney, an Orthopedic Manual Physical Therapist, explains: The mechanics of therapeutic heat and cold, ultrasound, and stretching exercises.
n An easy way to identify your maximum heart rate and stay within the exercise ?envelope? that?s beneficial for you.
Two types of manual therapy - joint mobilization and soft tissue mobilization.
And how to find/choose a knowledgeable ?body worker? such as a massage or physical therapist.

Muscle Abnormalities

Fibromyalgic muscles are tender, painful, or both. Research shows structural abnormalities in the muscle fibers, which are primarily due to not enough oxygen (hypoxia). [Figure 15.1: Pain cycle due to abnormal Fibromyalgia muscles - shows a circle of symptoms starting with abnormal FM muscles and cycling through seven other abnormalities, each of which contributes to pain and is exacerbated by pain. These are poor posture, poor body mechanics, strain on muscles, micro trauma (injury) to muscles, muscle guarding, disuse due to fear of movement, and poor movement patterns - coming back full circle to abnormal FM muscles.]

Physical Therapy Treatments

Heat and Cold
Heat applied with a moist or electrical heating pad relaxes muscles, increases blood flow, and facilitates healing. Cold inhibits blood flow (while applied) and blocks pain (numbs), leading to relaxation of the painful area by inhibiting the withdrawal reflex.

Heat is frequently applied for 20 to 30 minutes. Cold, using a frozen gel pack wrapped in a towel, is applied for 10 to 15 minutes. Ice rubbed directly onto the skin is applied for about 5 minutes.

Too much heat for too long can lead to swelling or burning and more pain. Too much cold can lead to frostbite. The heat packs sold in drug stores for one-time use (activated by exposure to air or by twisting them) can be used longer, because they aren?t as warm as heating pads.

Hot whirlpools can expose your whole body to heat. This helps when your whole body is sore. A temperature of about 104 degrees Fahrenheit for 10 to 15 minutes seems best for maximizing the benefits. If you want to soak for longer periods at home, the temperature should be no higher than 90 degrees or so.

Therapeutic Ultrasound
Ultrasound therapy is the application of high frequency sound waves to the body. Ultrasound treatment sets up a high frequency vibration in the muscle/tendon or ligament, generating a deep heat. This brings blood to the area, relaxing the muscles and facilitating healing. Most patients find ultrasound to be a comforting experience.

Stretching Exercises
There are hundreds of strengthening philosophies and techniques. Concentric contraction is less stressful to muscle fibers than eccentric contraction. In concentric contraction the muscles shorten; in eccentric contraction they lengthen, as for example when you lower a weight. A program that emphasizes concentric contractions with light weights is tolerated best by Fibromyalgia patients.

General non-painful movement strengthens the muscle by re-educating it to work more efficiently. The number of repetitions is kept low, in the 10 to 20 range so as not to overstress one muscle.

It is best to strengthen several muscle groups at a time, dividing the stress on the body more evenly. The physical therapist targets the muscles found to be weak on physical examination to determine what strengthening exercises are most appropriate.

With moderate to severe pain, strengthening before complete muscle relaxation is obtained will trigger more pain. In those cases, the physical therapist may focus on relaxing the painful muscles while strengthening those that can tolerate strengthening exercise.

Aerobic Exercise
Getting enough aerobic exercise is difficult even for those who do not have pain. It requires motivation, willpower, and the energy to do regular exercise. Due to the nature of the syndrome, Fibromyalgia patients frequently have pain and fatigue with exercise, so they have another hurdle to overcome in doing aerobics.

To understand aerobic exercise, you need to know that the body has two systems to supply itself with energy during exercise.

One system initially supplies the energy. If exercise continues, the other system takes over the task. When you start to exercise (e.g., ride a bicycle) the body burns sugar in the blood and/or muscles for energy, because sugar is the most accessible fuel. Burning sugar requires no oxygen, so exercise fueled by this process is called anaerobic exercise.

As we prolong the activity, the body switches energy systems so as not to deplete the supply of sugar in the blood, and it begins burning the fat. Burning fat requires oxygen, so this exercise is called aerobic exercise.

Nearly everyone wants to burn fat ? hence the popularity of aerobics. Aerobic exercise carries many benefits: cardiovascular improvement, increased feelings of well-being, a general strengthening, and the release of pain-relieving substances such as endorphins in the brain. Achieving these benefits is crucial to making Fibromyalgia patients feel better. But it?s a significant challenge.

Clinically we find that Fibromyalgia patients have low endurance and little strength. We also find that activity causes pain. Their muscles are easily injured, so post-exercise pain is common. Their muscles are less efficient than normal muscle. Like everyone, they try to avoid pain and therefore frequently avoid exercise. The key to doing aerobic exercise is in not doing too much ? just enough to realize a benefit. For the FM patient, the initial goal involves finding out how to move without increasing pain.

You can figure a basic guideline to gauge how much is too much aerobic exercise.

First estimate your maximum heart rate (MHR) by subtracting your age from 220. For example, a forty-year-old person?s maximum heart rate would be (220 minus 40 equals) 180 beats per minute.

When you exercise keep track of your heart rate. Determine what percentage of your maximum heart rate (MHR) you are exercising at. For example, if you ride a stationary bike at a heart rate of 108 beats per minute, that is 60 percent of 180, the MHR in this example. [You will need a heart rate monitor, which resembles a wristwatch, to track heart rate and know if you?re nearing your ?maximum?.

Your training index (TI) is an estimate of how much work your body is doing in your exercise program. You figure this value by multiplying three things:

The percentage of your MHR you exercise at?times
The number of minutes you exercise?times
The number of times you exercise per week.

To realize cardiovascular benefits from aerobic exercise, your TI should be above 40. To keep from aggravating Fibromyalgic pain, keep it below 90.

For example, if you ride a bike for 30 minutes (not counting warm up or cool down) at 60 percent of your maximum heart rate four times a week, your TI would be: 30 x .60 x 4 = 72. That?s within the acceptable range of 40 to 90.

So, let?s summarize with the formula for calculating your training index: (Number of Minutes of Exercise x Percent of MHR x Number of Sessions Per Week = TI)

It is important to have variety in your aerobic exercise program.

Riding a bicycle for 30 minutes uses the same leg muscles repeatedly. This can aggravate leg pain. It?s better to use several different activities and therefore spread the stress over many different muscles so one group isn?t overworked.

A typical routine to begin with is 5 minutes on a stationary bike with no resistance; 5 minutes on a treadmill at a slow, comfortable speed (1.5 to 2.0 miles per hour); and 2 minutes on an arm bike with the lowest resistance setting. Severe FM patients may need to start with more brief periods and a much slower pace.

Generally, the goal is to get up to about 30 minutes of aerobic activity. That can take several weeks, months, or years (in severe cases).

Joint Mobilization
Joints can have normal movement, not enough movement, or too much movement. If a joint doesn?t permit enough movement, it is said to be hypomobile. If it is loose and permits too much movement, it is said to be hypermobile.

A stiff and hypomobile joint needs mobilization. Manually gliding or distracting the joint is the usual treatment. A joint that moves normally usually requires no mobilization unless it is painful. Then low-amplitude oscillations (by manually vibrating the joint) can decrease the discomfort.

n Hypermobile joints are treated with stabilization exercises and sometimes braces. Manipulating a hypermobile joint just makes it looser and more painful. So, it is very important for therapists to evaluate joint movement before using joint mobilization techniques.

For example, the relief you get from ?cracking? your neck (usually by a quick movement) is mostly due to the quick stretch of the joint capsule with the concurrent reflexive muscle relaxation. There are beneficial and not-so-beneficial ?cracks.? Cracking (manipulating) a stiff joint can loosen it, and that helps. But manipulating a hypermobile joint also produces a crack and reflexive muscle relaxation, which may do more harm than good because it makes the hypermobile joint even looser. If much effort is required to get a crack, you are probably manipulating a hypermobile joint and should avoid doing so.

Fibromyalgia primarily affects the central nervous system and the soft tissue, so joint treatment is secondary. Joint stiffness most commonly occurs in the thoracic (mid-back) section of the spine. This area almost always requires joint mobilization to loosen tight spinal joints so the patient can sit and stand properly.

Soft Tissue Mobilization
Soft tissue is composed of muscle fibers, tendons, fascia, and ligaments.

n Muscle fibers are like cables wrapped in fascia (connective tissue much like a nylon stocking) into bundles. These bundles of muscle fibers are themselves bundled within fascia to form a muscle.

Muscles are attached to bone by tendons, which are elastic and can stretch.

Bones are connected to other bones by ligaments. Ligaments are inelastic and not meant to stretch; they should limit the range of joint movement so that the connected bones don?t come out of joint.

Joint capsules are similar to an elastic bandage that holds bones together but allows them to move.

Any of these structures can develop ?trigger points.?

Dr. Janet Travell defines a trigger point as ?a focus of hyperirritability.?3 All these structures have pain-sensing nerve endings in them, so trigger points cause pain. Fibromyalgia patients are especially susceptible to developing trigger points in muscle.

Trigger points can be caused by resting contraction, micro-injury, poor posture, poor movement patterns, disuse, and immobilization.

Muscles and fascia can also develop knots or restrictions. These restrictions are caused by the connective tissue fibers sticking together and bunching up. Treatment requires soft tissue mobilization/massage to free up restrictions and restore blood flow. The challenge in treating Fibromyalgia is doing this without increasing pain.

The following are some guidelines for applying soft tissue mobilization/massage:

n Whole-body massage is usually not tolerated because FM muscles have a hard time reabsorbing waste products (like lactic acid). Massage tends to stir up these molecules, keeping them undissolved so that they don?t get quickly washed away.

Direct/deep pressure causes ischemia (lack of oxygen) in the muscle and usually creates more pain, because part of the problem with FM muscles is they are already ischemic.

Soft-tissue work should start superficially. Once the top layers are loosened, deeper soft-tissue mobilization may be tolerated.


A stroke that goes parallel to the muscle fibers is well tolerated.

Strokes that go perpendicular to the soft tissue fibers are used after the parallel strokes have begun to loosen muscle tissue.

Using a cream (to prevent pinching the skin) that has no scent and few ingredients reduces the chances that the patient will be allergic to it or have a bad reaction.

Choosing a Muscle Therapist
Most Fibromyalgia dysfunction involves the muscles. So, it is important to involve massage therapists as well as physical therapists in Fibromyalgia management.

Finding a massage therapist or physical therapist who can help manage Fibromyalgia can be a challenging task. It may require trial and error. Asking fellow Fibromyalgia patients (at a support group, for example) may help you tap into a network of health care professionals who are a good fit for you.

The following are some guidelines for selecting a body worker:

Are they certified or licensed to practice what they claim to practice?


Do they really know what Fibromyalgia is ? a muscle and nervous system problem?

How does their technique for treating Fibromyalgia differ from their technique for treating healthy individuals?

Deep, vigorous massage usually aggravates moderate to severe Fibromyalgia symptoms. Full-body, one-hour sessions are usually too long. Direct pressure into trigger points tends to cause flare-ups. Myofascial release or stretching must be preceded by gentle soft-tissue massage.
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Why Doesn't My Doctor Know This?

by Kent Holtorf, MD 04-09-2007

Dr. Kent Holtorf, MD, is Medical Director of the Holtorf Medical Group Center for Hormone Imbalance, Hypothyroidism, and Fatigue in Torrance, California.* He specializes in treating CFS and FM patients.

A question that is often raised by patients is ?Why doesn?t my doctor know all of this?? The reason is that the overwhelming majority (all but a few percent) of physicians (endocrinologists, internists, family practitioners, rheumatologists, etc.) do not read medical journals. When asked, most doctors will claim that they routinely read medical journals, but this has been shown not to be the case.

The reason is multi-factorial, but it comes down to the fact that the doctors do not have the time. They are too busy running their practices. The overwhelming majority of physicians rely on what they learned in medical school and on pharmaceutical sales representatives to keep them ?up-to-date? on new drug information. Obviously, the studies brought to physicians for ?educational purposes? are highly filtered to support their product.

There has been significant concern by health care organizations and experts that physicians are failing to learn of new information presented in medical journals and lack the ability to translate that information into treatments for their patients. The concern is essentially that doctors erroneously rely on what they have previously been taught and don?t change treatment philosophies as new information becomes available. This is especially true for endocrinological conditions, where physicians are very resistant to changing old concepts of diagnosis and treatment despite overwhelming evidence to the contrary, because it is not what they were taught in medical school and residency.

This concern is particularly clear in an article published in the New England Journal of Medicine entitled "Clinical Research to Clinical Practice - Lost in Translation."1 The article was written by Claude Lenfant, MD, Director of the National Heart, Lung and Blood Institute, and is well supported. He states there is great concern that doctors continue to rely on what they learned 20 years before and are uninformed about scientific findings. The article states that medical researchers, public officials, and political leaders are increasingly concerned about physicians? inability to translate research findings in their medical practice to benefit their patients, and states that very few physicians learn about new discoveries [via] scientific conferences and medical journals and translate this knowledge into enhanced treatments for their patients.

He states that a review of past medical discoveries reveals how excruciatingly slow the medical establishment is to adopt novel concepts. Even simple methods to improve medical quality are often met with fierce resistance. The article states, ?Given the ever-growing sophistication of our scientific knowledge and the additional new discoveries that are likely in the future, many of us harbor an uneasy, but quite realistic, suspicion that this gap between what we know about diseases and what we do to prevent and treat them will become even wider. And it is not just recent research results that are not finding their way into clinical practice; there is plenty of evidence that ?old? research outcomes have been lost in translation as well."

Dr. Lenfant discusses the fact that the proper practice of medicine involves ?the combination of medical knowledge, intuition and judgment? and that physicians? knowledge is lacking because they don?t keep up with the medical literature. He states that there is often a difference of opinion among physicians and reviewing entities, but that judgment and knowledge of the research pertaining to the patient?s condition is central to the responsible practice of medicine. He states, ?Enormous amounts of new knowledge are barreling down the information highway, but they are not arriving at the doorsteps of our patients.?

These thoughts are echoed by physicians who have researched this issue as well, such as William Shankle, MD, Professor, University of California, Irvine. He states, ?Most doctors are practicing 10 to 20 years behind the available medical literature and continue to practice what they learned in medical school?There is a breakdown in the transfer of information from the research to the overwhelming majority of practicing physicians. Doctors do not seek to implement new treatments that are supported in the literature or change treatments that are not."

The Dean of Stanford University School of Medicine understands that there is a problem of doctors not seeking out and translating new information to benefit their patients. He states that in the absence of translational medicine, ?the delivery of medical care would remain stagnant and uninformed by the tremendous progress taking place in biomedical science."

This concern has also received significant publicity in the mainstream media. In an article published in a 2003 Wall Street Journal article entitled "Too Many Patients Never Reap the Benefits of Great Research," Sidney Smith, MD, former President of the American Heart Association, is very critical of physicians for not seeking out available information and applying that information to their patients. He states that doctors feel the best medicine is what they?ve been doing and thinking for years - because that is what they?ve been doing. They discount new research because it is not what they have been taught or what they practice, and refuse to admit that what they have been doing or thinking for many years is not the best medicine. He writes, ?A large part of the problem is the real resistance of physicians?many of these independent-minded souls don?t like being told that science knows best, and the way they?ve always done things is second-rate."

The National Center for Policy Analysis also reiterates concern for the lack of ability of physicians to translate medical therapies into practice.

A review published in The Annals of Internal Medicine found that there is clearly a problem of physicians not seeking to advance their knowledge by reviewing the current literature, believing proper care is what they learned in medical school or residency and not basing their treatments on the most current research. They found the longer a physician is in practice, the more inappropriate and substandard the care.

A study published in the Journal of the American Medical Informatics Association reviewed by The National Institute of Medicine reports that there is an unacceptable lag between the discovery of new treatment modalities and their acceptance into routine care. They state, ?The lag between the discovery of more effective forms of treatment and their incorporation into routine patient care averages 17 years.?

In response to this unacceptable lag, an amendment to the Business and Professions Code, relating to healing arts, was passed. This amendment, CA Assembly Bill 592; An act to amend Section 2234.1 of the Business and Professions Code, relating to healing arts, states, ?Since the National Institute of Medicine has reported that it can take up to 17 years for a new best practice to reach the average physician and surgeon, it is prudent to give attention to new developments not only in general medical care but in the actual treatment of specific diseases, particularly those that are not yet broadly recognized [such as the concept of tissue hypothyroidism, Chronic Fatigue Syndrome, and Fibromyalgia]...?

The Principals of Medical Ethics adopted by the American Medical Association in 1980 states, ?A physician shall continue to study, apply, and advance scientific knowledge, make relevant information available to patients, colleagues, and the public.?

This has unfortunately been replaced with an apathetical goal to merely provide so-called adequate care. The current reimbursement system in America fosters this thinking, as the worst physicians are financially rewarded by insurance companies. The best physicians are continually fighting to provide cutting edge treatments and superior care that the insurance companies deem not medically necessary. Even the best physicians eventually get worn down and are forced to capitulate to the current substandard care.

This was clearly demonstrated in a study published in the March 2006 edition of The New England Journal of Medicine, entitled "Who is at Greater Risk for Receiving Poor-Quality Health Care?" This study found that the majority of individuals received substandard, poor-quality care. There was no significant difference between different income levels, or between individuals who have insurance and those who do not. It used to be the case that only those in low socioeconomic classes without insurance received poor-quality care. Insurance company restrictions of treatments and diagnostic procedures have caused the same poor care afforded to those of low socioeconomic status without insurance to become the new standard-of-care.

Most physicians will satisfy their required amount of continuing medical education (CME) by going to a conference a year, usually at a highly desirable location that has skiing, golf, boating, etc. A physician is rarely monitored as to whether he or she actually showed up for the lectures. One must also understand that the majority of conferences [organized] by medical societies are sponsored by pharmaceutical companies. These payments are called 'unrestricted grants', in that the society has free rein to do what it wants with the money and can thus claim there is no influence on lecture content by the pharmaceutical company. The problem is that if the society wants to continue getting these unrestricted grants from the particular company, they had better provide content that is of benefit to the pharmaceutical company that paid for the grant.

Consequently, ground breaking research that goes against the status quo and does not support the drug industry receives little attention. The doctor must actively search for these studies, which only a few percent are willing to do on a consistent basis.

There is clear evidence and concern that published research is clearly tainted by whomever is the financial sponsor of the study.

A study published in the Journal of Psychiatry (and later discussed in the May 2006 edition of Forbes magazine) states that the most important determinant of the outcome of the study is who paid for it.

An analysis in the Archives of Internal Medicine reviewed 56 studies of painkillers - and not once was the sponsor?s drug deemed inferior. In addition to reading the conclusion of the study, a physician must read the entire study and review the data with a critical eye, which is rarely done.

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