Fibromyalgia Fictions and Facts

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Fiction: Fibromyalgia is a new disease.
Fact: Symptoms similar to Fibromyalgia were described in the 1700's. It was called fibrosis in 1904 and renamed Fibromyalgia in the 1980's

Fiction: There is no cure for Fibromyalgia.
Fact: There is no cure ... yet ! Assuming there is none, makes it a sure bet that no one will bother trying to find one.

Fiction: FM is not life threatening.
Fact: FM is not directly life threatening in and of itself, but the cumulative damage done effects life expectancy.

Fiction: Fibromyalgia cannot be diagnosed through blood tests, X-rays or muscle biopsies.
Fact: Only partly true. Not with the typical lab work that is currently used, no, but in actuality, yes it can. This is done, one, via special testing, but such is generally done in a research setting that is far beyond your typical lab setting. Furthermore, there is a blood assay, APA Assay, intended for general lab use, which detects an abnormal immune system responses, which has been available for quite some time (1999 is the date on the original press release ), however, its availability is not common knowledge and most certainly it is not in common use. 

There has been extensive testing done on the assay, and it has shown itself to be a reliable indicator of FM. The reasons for the medical professions failure to apply it or make use of it, are unknown. So saying it cannot be diagnosed with lab work, is misleading.

Fiction: Fibromyalgia is caused by deconditoning, and they just need to get some exercise.
Fact: Most FM suffers were very physically fit, active people, when the disease struck and were not in any way deconditioned. Research indicates that anyone who is "cured" of FM by an exercise regime alone, were often misdiagnosed and generaly found to be suffering from clinical depression and other disorders, which mimic many of the signs of FM, which has lead to this common fallacy.

"The limbic system plays an important role in regulating the body's stress response, and under normal circumstances, one would expect to cause the following (from doing an exercise bicycle stress test):

increase in temperature
increase in cortisol production
increase in growth hormone production
increase in catecholamines (norepinephrine and epinephrine)
increase in cerebral blood flow

None of the above predictions occurred in the CFS/FMS patient population! In fact, both temperature and cerebral blood flow decreased with exercise -- the opposite of what one would expect. ... "

"No association was noted between improvement in aerobic fitness, as measured by VT, and the improvement of pain, function, or scores ... aerobic exercise is beneficial to patients with FM overall, but the possible cardiorespiratory fitness gain is not related to any notable improvement of FM symptoms." Aerobic fitness effects in Fibromyalgia. J Rheumatol. ( FM and exercise on site link)

Fiction: People with Fibromyalgia exaggerate their pain.
Fact: We often hide our pain for starters. And the pain is twice the severity and life impact of rheumatoid arthritis. Journal of Rheumatology

Fiction: Having a diagnosis makes the condition worse, as you are now labeled as "sick" and therefore, "act" sick.
Fact: We were sick long before we got any diagnosis. A diagnosis is a relief to most people, for the simple reason that now we know what we are dealing with and generally improve as a result, rather than decline.

Fiction: FM is an Adjustment disorder
Fact: An Adjustment Disorder is an abnormal and excessive reaction to an identifiable life stressor, beginning within three months of the onset of an identifiable stressor and lasts no longer that six months after the stressors have ceased. There is no identifiable stressor in FM and its effect is a duration of years.

Fiction : Fibromyalgia is a diagnosis only reached by exclusion, meaning if you rule out everything else, it must be FM.
Fact: In 1990, The American College of Rheumatology and many others, scientifically established the diagnostic criteria for FM. The need to rule out other conditions, is a fact. As FM signs mimic other aliments that might otherwise be missed, if not investigated. However, this is not needed for a diagnosis of FM.

Fiction: People with FM are just looking for sympathy.
Fact: In order to garner sympathy or pity, one requires A: an audience and B: persons who are disposed to give sympathy. Those with FM, feel just as much pain and difficulty, even when they are alone. ( James and Hawser, Pain in Private, hidden camera studies, and others ) Persons with chronic pain tend to hide their pain rather than display it. Most people are not sympathetic to invisible illness. "Our society encourages denial of all things unpleasant, especially those we fear or cannot readily understand." Katrina Berne

Fiction: You look fine, you must be fine.
Fact: Over (133 million) people in American, has a chronic condition. 93% of which, have disabilities not visible to the naked eye. ( You look fine, on site link )

Fiction: Fibromyalgia is not a disabling condition.
Fact: The rate of disability for Fibromyalgia patients may be as high as 44 percent or more, according to the Arthritis Foundation.

Fiction: People with Fibromyalgia sought their diagnosis.
Fact: 75% of people diagnosed with Fibromyalgia, had never heard of the disorder prior to the date of their diagnosis.

Fiction: Fibromyalgia is a psychiatric problem.
Fact: The percentage of FM patients who suffer with depression on site link, is no higher than for any other chronic illness. Depression is a by product of the disorder, not the cause. "The majority of patients didn't have depression in the years before they became ill." FM news

"Research studies have revealed a number of biological abnormalities, including:
Decreased blood flow to specific areas of the brain, particularly the thalamus region, which may help explain the pain sensitivity and cognitive functioning problems experienced by Fibromyalgia patients. 

High levels of “substance P,” a central nervous system neurotransmitter involved in pain processing.
Low levels of nerve growth factor.
Low levels of somatomedin C, a hormone that promotes bone and muscle growth.
Low levels of several neurochemicals: serotonin, norepinephrine, dopamine and cortisol.
Low levels of phosphocreatine and adenosine, muscle-cell chemicals. " Karen Lee Richards

None of these physical changes happen in psychiatric conditions, but consistently occur in persons with FM.

Fiction: Fibromyalgia is a fatal condition.
Fact: There have been no reported deaths directly related to FM itself. It is to be noted however, that those with FM have a higher than normal suicide rate, which stands at over nine times the national average, at 26.1 %, The normal figures for the general population, is 2.9% Research

Fiction: Only women get Fibromyalgia.
Fact: Recent research suggests that 1 in 8 Fibromyalgia patients is male. That figure is considered low and is under challenge. It is postulated that the real numbers are closer to one out of three, are male. Men's Stories

Fiction: Fibromyalgia only affects older adults.
Fact: FM does effect, teens, young adults, and children.

Fiction: The best medicines for FM are anti inflammatory drugs.
Fact: FM is not an inflammatory condition, so such medications are of little value. If any pain reduction is noted, it is likely arthritis or another inflammatory conditions pain, that is being reduced. "Non-steroidal anti-inflammatory drugs (NSAIDS – pronounced en-seds) and corticosteroids are two types of medications often used to treat many forms of arthritis. However, neither has been shown to be useful in treating Fibromyalgia." The Arthritis society

Fiction: Fibromyalgia is very rare.
Fact: Fibromyalgia is a very common disorder, affecting more than 8-10 million people in the United States. Currently over 30% of the persons seen in your average rheumatologists office, are being seen for FM.

Fiction: Fibromyalgia is a form of arthritis.
Fact: While many people with FM have some form of arthritis, it is not FM. Fibromyalgia is a neurological disorder that is often seen in tandem with arthritis, lupus and other joint, muscle problems. According to the National Institutes of Health, Fibromyalgia is not truly a form of arthritis but is considered an arthritis related condition and a rheumatic disease, with regard to it's classification.

Fiction: FM does not progress or worsen.
Fact: "No one goes to bed one night healthy, and just wakes up with FM", so of course there is a progression. Those with FM are often diagnosed in middle age, but research shows that the signs and symptoms were there but unrecognized, long before the final diagnoses is finally reached. Ergo, it has increased in severity until it becomes apparent what is wrong.

Fiction: You can exercise Fibromyalgia pain away.
Fact: "Any program involving sustained aerobic activity that induces cardiovascular debt or strenuous muscular exertion such as weightlifting, can seriously damage sufferers of Fibromyalgia and Chronic Fatigue Syndrome... Damage to the Autonomic Nervous System in patients with Fibromyalgia and CFS mean that energy production via the Sympathetic Nervous System in response to exercise is impaired. More importantly, removal of toxins and lactic acid produced by the muscles in response to exercise via the lymphatic and venous systems is seriously compromised, and as a result causes toxic overload and rapid symptomatic decline after exercise. This results in the "post-exertional malaise" that Fibromyalgia and CFS sufferers who have attempted an exercise regime WILL have experienced." Mark J Shaw.

Fiction: You just have to learn to live with the pain, There's nothing that can be done.
Fact: This is a statement from a doctor who does not know enough, or care enough to help you. Find another physician.

Fiction: If you have slept for 8 hours, you have gotten enough sleep.
"The Physician's Guide to Fibromyalgia Syndrome" notes that abnormal amounts of alpha activity have been reported on electroencephalograms of FMS patients during deep sleep. Since the alpha stage is the lightest sleep recorded, those with increased alpha sleep do not awaken rested and refreshed, even if they have been "asleep" for eight hours. (FM and sleep on site link)

Fiction: On a day when you are feeling well, you should do as much as possible, since you may not be productive the next day.
Fact: Absolutely not, as this is just asking to crash and burn ( on site link )

Fiction:You'll never fully be productive in your life again and won't be able to completely enjoy your life.
Fact: While you may have to change how you do things, you can still be productive, just in another way and enjoyment of life comes from within.

Fiction: Giving pain killing medications to someone with chronic pain, is courting addiction.
Fact: "Studies have shown that the fears of patients becoming addicted are exaggerated, and do not justify failure to relieve pain. Patients who are in pain and are being medically managed, are receiving treatment for a specific reason and do not become addicted" Bruce R. Canaday "

"No evidence supports fear of addiction as a reason for withholding narcotics when they are indicated for pain relief. All studies show that regardless of doses or length of time on narcotics, the incidence of addiction is less than 1%." Devin Starlanyl

Fiction: Chronic pain is just a normal part of the aging process.
Fact: "The presence of pain in older adults is not normal, and should be treated with the same aggressive approach that is used for younger people." AARP

Fiction: A person who does not complain of pain, must not have pain.
Fact: People do not report pain for many reasons. They may not want to be a burden to their families or care givers. Very often however, according to reports and surveys, pain sufferers feel that they will not be believed or their complaints have been met with scorn or derision in the past so, they stop reporting them. Chronic health conditions

Fiction: Fibromyalgia and Myofascial pain on site link, are one in the same thing.
Fact: While most with FM do have CMP, and they are commonly seen together, they are not the same condition, and have to be treated separately. CMP pain differs from FM in that it is localized, rather than defuse, fatigue is not a factor, and the trigger points can be resolved with proper treatment.

Fiction: Trigger points and Tender points are the same thing.
Fact: Trigger points are CMP( on site link ) points, VS Tender points, the points used for diagnostics in FM. They are not the same thing.

Fiction: Any pains or symptoms you feel when you have FM, is your FM.
Fact: Having FM does not confer any immunity from getting other conditions. Dismissing any new pains or signs, could cause both the patient and the doctor to ignore major health warning signs. Any new pain or condition, should be investigated thoroughly.

Fiction: Patients who complain of Fibromyalgia pain, despite treatment, are just seeking drugs.
Fact: Less than half of the patients with Fibromyalgia achieve adequate pain relief with medications and this includes when given narcotics. "Opioid pain killers work by binding to opioid receptors in the brain and spinal cord ... Patients with Fibromyalgia were found to have reduced binding ability of a type of receptor in the brain, that is the target of opioid pain killer drugs such as morphine. Science Daily

Furthermore, most persons with FM, who, in the early stages, have often tried many or even all, of the current day medications typically given for FM, often stop taking any of them. They do so, due to the medications failure to improve their symptoms or pain and as noted, this often includes narcotics. FM and pain management on site link. 

(I was recently (2012) given a stronger narcotic for pain, at my request. To my doctors shock, in less than a mt, I told her to go back to the older, weaker variety. As the so called stronger narcotic, being of a slightly different chemical nature, did not work as well as the former one. )

Fiction: People with FM are just faking it.
Fact: "Double blind studies have found that rheumatologists could dependendably tell the difference between people who truly had Fibromyalgia, and those who were given an incentive, and the detailed directions, on how to fake the symptoms."

Fiction: The drug Lyrica, is a new drug, and was developed for FM.
Fact: Lyrica (pregabalin), is not new, it was developed and approved in December 2004, for the treatment of neuropathic pain in Diabetes and Shingles. It is also used to control peti mal seizures.

It is the first drug that has ever been approved for use in Fibromyalgia directly, by the FDA, but it was not developed for FM. It has proved, thus far, not to be very effective for FM in real life trials, but the jury is still out on it. 

Two others that have been recently approved are:

  • Cymbalta
  • Savella
You can find information about both on the Medications  on site link.

All medications, currently given for FM, were developed for other purposes, and their use in FM is classed as "off label" use. There are no medications to date, that have been developed for Fibromyalgia specifically. 

Fiction:Since there is no medication made just for for Fibromyalgia, there is no use going to a doctor for it.
Fact: While no doctor can cure FM ... yet, there are treatments to help you mitigate the symptoms and any of the
symptoms you can make less, is well worth doing.