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Chapter 2-Three Things We Know About Fibromyalgia

There is a lot of good content in this chapter, so bear with me as I share it.  Let me know what you think!  The information in this chapter discussion are not meant to diagnose or treat fibromyalgia.  Always, check with your doctor before beginning any treatment.

Despite being the second most prevalent rheumatologic disease, there has been relatively little research undertaken to understand Fibromyalgia.

1. Fibromyalgia is Associated with Disordered Pain Processing

The evidence in the medical literature is strongly supportive of abnormal processing of pain information in the central nervous system to physically induced pain such as pressure, heat, cold, or electrical stimulation resulting from generalized lowered pain thresholds in fibromyalgia.  The evidence is strongly supportive of an abnormality in the central nervous system pain processing known as central nervous system sensitization or central sensitization for short.  People with fibromyalgia feel pain more readily and with a much higher sensitivity, than those without fibromyalgia.  There is clear evidence for increased sensitivity to external painful stimuli in patients with fibromyalgia.

There are, also, neurotransmitter abnormalities which can be associated with serotonin level issues.  Not source or cause of pain has been identified in all of the studies.  Studies have not identified the sources or cause of the seemingly spontaneous pain reported in fibromyalgia.

2.  The Treatment of Fibromyalgia is Profoundly Disappointing.

Patients are being told they have a chronic painful disease that may impair their ability to function with no known cause, cure, or highly effective treatment and that they must learn to live with it.

Medications do not seem to help much.  Nonsteroidal anti-inflammatory drugs (NSAIDS) are frequently prescribed despite the evidence indicating that they are no better than the placebo.  Prednisone has not been show to be of benefit, either.  Analgesics are also frequently used in managing fibromyalgia symptoms despite little data regards their effectiveness.  Acetaminophen has shown less benefit.  Tramadol (Ultram) is a weak opioid medication.  There is some benefit using it alone or in combination with acetaminophen.  Antidepressant and other psychoactive medications are used frequently to manage the symptoms of fibromyalgia.  The most used and studied is Elavil and the muscle relaxant Flexeril.  In low doses (10-50 mg daily) Elavil has shown improved pain.  Flexeril in studies (given 10-40 mg daily) have reported improvement in pain, sleep, global well-being, and fatigue.  Long term use of either Elavil or Flexeril is unknown.  Selective serotonin reuptake inhibitors (SSRIs) (like Prozac, Celexa, and Zoloft) are a class of drugs that have been highly successful in treating psychiatric conditions such as depression, anxiety, and phobias.  When given to treat fibromyalgia in studies, they are not consistently showing improvement in pain.  But one study using Prozac and Elavil showed they were more effective in reducing pain and symptoms than either drug alone.  When studies were conducted using Effexor the results were mixed and inconsistent.  Cymbalta (used in studies) showed some improvement in some but not all pain measures, reduction in tender point counts, and some improved quality of life measures in women with fibromyalgia, but not in men.  S-adenosyl-L-methionine (SAMe) is a compound that has antidepressant, anti-inflammatory, and analgesic properties.  One trial showed improved mood and tender points, another showed improvement in mood, pain, overall disease activity and fatigue, and a third study showed no benefit.  Studies using Neurontin and/or Lyrica demonstrated improvements in pain, sleep, fatigue, and global symptom severity in higher doses. A placebo controlled trial to assess the benefit of Lyrica in patients with fibromyalgia showed that 63% of patients achieved significant reduction of pain initially, and after 26 weeks of treatment, 32% of those patients lost the therapeutic response achieved at onset but significantly more patients sustained a defined improvement compared to placebo treatment.  The expectorant guaifenesin has been used to treat fibromyalgia on the assumed, but unproved, theory that there is an excess accumulation of phosphate in the muscles and that this can be excreted by the action of guaifenesin.   A one year double blind controlled trial failed to demonstrate any improvement in global functioning or tender point counts.

The medication trial data do show that Flexeril and Elavil appear to be the most helpful drugs in managing fibromyalgia for reasons to be yet determined.

Study programs providing exercise about 1-3 times weekly for a range of about 6 weeks to 6 months and involved either walking, bicycling, dancing, or swimming with or without accompanying education, showed improvement in pain, pain threshold, tender point counts, fatigue, quality of life, and psychological distress.  But improvement is not uniformly noted.  Maximal exercise has been shown to increase pain sensitivity in patients with fibromyalgia.  The degree of improvement is not dramatic.  Tender point pain threshold improves by 28% and pain is reduced by 11%.  Some patients receive nominal benefit from aerobic cardiovascular fitness training while others cannot tolerate such programs.

Cognitive behavioral therapy (CBT) programs include education, coping skills training, cognitive and behavioral training, and relapse prevention.  All programs are centered around fibromyalgia.  Additional components may include relaxation training, stress management, biofeedback, meditation, exercise, physical therapy, or occupational therapy.  Studies are showing benefits from CBT.  There is improvement in pain, tender point counts, stiffness, stress when stress management is incorporated, distress, functional ability, sleep mood including depression and anxiety, and general healthy assessment.  And it sustained up to 30 months following completion of the program.

It is virtually impossible to perform blinded studies with regard to the patient and the treatment provider for non-medication interventions.  Hands-on type treatments are subjective in their application and difficult to standardize.  Some of those treatments are Electromyography (EMG) biofeedback, hypnosis and relaxation training, meditation, neck support, acupuncture, nutritional interventions and dietary supplements, whirlpool baths with valerian, dietary modifications, static magnet therapy, chiropractic intervention, massage therapy.  As with all the other treatments reviewed, the treatment trial data clearly tell us that fibromyalgia is not a homogeneous disease or process and that we have no clue as to what to target any treatment against nor how to measure its benefit.

3.  Patients with Fibromyalgia Do Not Do Well In the Long-Term

Patients with fibromyalgia in general do not do well in the long term, although those with milder symptoms may do better because inherently they have less severe symptoms and involvement.

Chapter 1-Pain From Nowhere: Fibromyalgia is A Failure of Medical Science

Who would want a disease or a diagnosis of a disease that has been described for almost two hundred years, that correlates with widespread pain and causes widespread tenderness, is associated with a significantly disrupted sleep pattern, has no identified known causes, has no known treatment, is chronic, and will persist for the rest of one’s life?

Over 6 million Americans diagnosed with fibromyalgia have pain that apparently nobody knows the cause of or how it even develops.  It is noted as far back as 1816.  Fibromyalgia is one of the most prevalent rheumatic diseases encountered.  Fibromyalgia is characterized as a medically unexplained disease.

When patients with chronic widespread pain are examined for tender fibromyalgia points about 1 out of 5 individuals had 11 or more tender points.  The tenderness had little relationship to the pain itself and was better correlated with depression, fatigue, and poor sleep.  The painful tenderness is found in at least 11/18 fibromyalgia points.

The mean patient age, at time of the diagnosis, is forties to fifties.  It is more common in females.

The core symptom of fibromyalgia is chronic widespread pain.  It is mostly located in the soft tissues, especially in muscle areas.  The pain can vary over the course of a day as well as over days and weeks.  The pain is greater than that reported by rheumatoid arthritis patients.

Another problem associated with fibromyalgia is fatigue.  Sleep disruption is a significantly prominent and frequent feature of fibromyalgia.  Patients awake unrefreshed.  Patients show, in EEGs, that there is an intrusion on the stage 3 and 4 Non-Rapid Eye Movement (NREM) deep sleep delta wave pattern.  It is worth noting that the experimental disruption of slow wave, stage 3 and 4 NREM sleep in healthy, normal individuals produces muscle aching, stiffness, and increased tenderness.

Cognitive impairments are also reported by many fibromyalgia patients.  They describe difficulty with short-term memory, concentration, and logical thinking.

Fibromyalgia patients have a greater number of lifetime psychiatric diagnoses compared to controls, especially mood disorders such as depression and anxiety disorders.  Major depression in 20-30% and anxiety disorder in 10-20% at the time of assessment were reported.  Psychiatric disorders including depression, anxiety, stress disorders like post traumatic stress disorder, and sexual and physical abuses are identified in 75% of dysfunctional fibromyalgia patients.

Other symptoms reported by individuals with fibromyalgia includes headaches, restless leg syndrome, irritable bowel syndrome, irritable bladder or female urethral syndrome, cold sensitivity along with cold hands and feet, sensitivity to chemicals, weather medications, loud noises, and bright lights, dry eyes and mouth, dizziness, paresthesia and dysesthesias (needles, pins, numbness, tingling, or unusual skin sensations) without obvious neurologic abnormality, skin photosensitivities, skin rashes and mouth ulcers.

There are no identified laboratory abnormalities that help diagnose, treat, or define prognosis of fibromyalgia.  The role of laboratory investigation in fibromyalgia is to assess for the presence of other conditions that co-exist with fibromyalgia or conditions producing fibromyalgia like syndromes.

Once a diagnosis of fibromyalgia is made, all other and subsequent complaints and findings that cannot be otherwise explained are attributed to fibromyalgia.  Forever.

Patients and doctors are in dire need of something new, different and more effective than the current thinking and treatment related to fibromyalgia.

The Missing Pieces of the Fibromyalgia Puzzle by Jeff Sarkozi, MD, FRCPC, FACR

I will be venturing into this book.  I am looking forward to sharing it and educating you more about this disease/ailment.  Please follow me as I dive into this book that was so graciously gifted to me by my parents at Christmas!

www.missingpiecesfibromyalgia.com