Everybody's got a theory
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Everybody's got a pet theory and we with FM have heard most of em. A good percentage of which, are totally without any real backing or proper research protocols. They are in short, entirely unfounded and sometimes based on very flimsy speculation that is being passed off, as fact. So, a bit of Myth busting is order.
Theory: FM is a build up of phosphates :
This theory gave rise to the rather well known, "Guaifenesin protocol" which is an experimental alternative treatment for fibromyalgia proposed in the 1990's by Dr R. Paul St. Amand. The proposed treatment involves three parts: titrating to the proper guaifenesin dosage, total avoidance of salicylates, and following a low carbohydrate diet if the patient is hypoglycemic. " Dr R. Paul St. Amand believed that FM was caused by excess phosphate.
There is no evidence that excess phosphate can cause Fibromyalgia symptoms.
Phosphates are used everywhere in the body, we need it to build bones etc. Phosphate is common in most of the foods we eat, so a phosphate deficiency is nearly impossible, save in a starvation state. An excess of phosphate is also almost impossible, because the kidneys are very good at getting rid of any excess. The kidneys would have to drop to less 50% of their functionality, in order for there to be any reduction in their ability to dump excess phosphates.
In 1990's, Dr. Robert Bennett, a recognized expert in fibromyalgia, did a study on guaifenesin, with Dr. St. Amand. The results ? Guaifenesin had no effect on fibromyalgia. ... "Dr. St. Amand then claimed that the patients in the study, must have unknowingly been exposed to products that contained salicylates."
This, as anyone who has seen the countless web sites on the protocol, is forever the excuse for the protocols high failure rate. The list of supposed sources for salicylates run the gambit from hand lotions, to toothpaste. This is despite repeated research that shows that the likelihood of getting salicylates into the body from external sources, is almost nil.
"Dr. Robert Bennett countered this assumption, saying that if there were sufficient quantities of low level salicylates to "block" guaifenesin, then this should have caused a decrease in urinary uric acid." But the lab tests from the study did not show this happening. Thus, Dr. Bennett concluded that there was no exposure to salicylates. " Further, he went on to say, that any benefit those on the protocol may have received, was due to a placebo effect. " As well as there is the fact that Guaifenesin has muscle relaxant qualities. To date, no researcher has been able to replicate any lasting benefit from Guaifenesin.
Theory: Exercise is mandatory for all patients and will cure FM.
This one is so popular, you almost cannot find a site that talks about FM, that does not say it. Exercise and over all improvement of cardiovascular fitness, while a worthy goal, does not cure FM. Futhermore, what many do NOT say, is that it has to be the right kind of exercise and it has to be carefully managed or you will make the person worse, not better. Moreover, our bodies do not react the same way anymore to exercise, as "normals" and the wrong kind, can be damaging.
"Many studies on the use of exercise to treat fibromyalgia have been published over the years, and while the documented benefits are minimal, these studies are heavily promoted at medical conferences and widely publicized in the medical journals. Exercise is easy to prescribe and doesn't cost anything, so it tends to be one of the first therapies that a doctor recommends, especially if they have limited experience with the pharmacological management of fibromyalgia. " FM network
What happens in normal persons, when they exercise
"Aerobic exercise has been shown to activate endogenous opioid and adrenergic systems and attenuate experimental pain in normal control subjects (NC meaning normal controls are temporarily less sensitive to pain ). In contrast, fibromyalgia (FM) subjects' experimental pain ratings increase after aerobic exercise, suggestive of abnormal pain modulation ( are more sensitive to pain) " Staud R, Robinson ME, Price DD
Aerobic exercise requires the heart and lungs to work harder to meet the body's increased oxygen demand. Most persons with FM, are unable to meet this oxygen demand and rapidly go into oxygen debt.
Anaerobic exercise, to build muscle mass, is done by the body, without the oxygen hand off. "Those with FM are naturally close to the anaerobic threshold under normal conditions, and have considerable lactic acid build up, so any exercise can put them over the edge"
"Most persons with FM have low levels of growth hormones, which are critical for muscle repair. ... Most microtrauma--small tears in the muscle--takes place during the eccentric contraction, or the negative phase, when the weight is returned to its original position. The subsequent rebuilding and repair, aided by growth hormone, is why muscles grow and get stronger. But for someone with a lower level of growth hormone, there's not as much repair and rebuilding, just more pain.The repair-rebuilding process is also compromised by the sleep problems experienced by fibromyalgia patients. Major disruption occurs during the stage 4, or deep sleep, phase, when most muscle repair and rebuilding is believed to take place. " Muscle & Fitness/Hers,Dec, 2002 by Frank Claps
It is easy to understand why doctors assume that exercise will help, as they assume it would help a lot of the issues we have. However, this does not take into consideration our body's current negative response to the wrong kind of exercise. As seen above, in most cases, it is the exact opposite of what they would expect to have happen.
Unfortunately, far too many doctors are unaware of this and push the wrong kind of exercise on their clients. And when the expected results do NOT occur, they often add insult to the injury, by assuming that the person is A: not doing the exercises B: is not doing them hard enough C: is faking their reaction. ( see FM and exercise on site link)
Ok, then why do so many studies say it's a must do and that it helps, cures FM ? The primary reason ?
Mis-diagnosis: The subjects for many of the older studies, did not have FM. They had any number of other aliments that mimic it. They were depressed, had Cushing’s Syndrome, thyroid disorders, rheumatoid arthritis, polymyositis, up to at least 45 different aliments, that mimic the collective signs seen in FM, and were therefore, mis-diagnosed. The result ? Since they did not have FM, their body responded normally to the exercise that was recommended to them and they reaped the benefits thereby, giving rise to the persistent assumption that exercise can "cure" or even treat FM.
Understand, the larger percentage of us, with FM, were very fit, very active people, before FM took hold.
Like myself for example: I was a dancer by trade, so I got lots of aerobic exercise and got lots of anaerobic exercise as well, as I was a body builder for hobby. On top of all that, I was a waitress. I was VERY fit thank you and got more exercise, just in the course of day to day living and doing my normal job, that most people will ever see. I had major muscle mass, a well defined body structure and was very strong.
In short, I had all the normal benefits of exercise. All of this was accomplished, despite near body wide arthritis, which I had long since learned to manage. I was a fitness freak to be blunt, with all the proper diet to sustain such activity, doing the lifts the right way, etc.
After FM however, all of that had to stop, almost immediately. The first to go was body building. It went from an enjoyable hobby, to a painful impossibility. I had to give up my job as a dancer. I was barely able to keep doing my job as a waitress, while I went to college to train for a less demanding trade. The trade that I trained for, I did part time for 5 years, while attending full time college. However, due to increasing disability I finally had to give up both the job and school. I was just 2 years shy of my Masters Degree.
So when I read that " all you need is some exercise." It just makes me want to scream, as I am living proof, that is false. As if it were so, I would have never developed the disease in the first place. Some other theories would say, that I developed FM as a result of this "excessive" activity. ( See theories on Type A personalities further down ... and you will see, it starts to look like a case of condemned if you do, and condemned if you don't here, depending on whose theory you ascribe to )
Theory: There is a correlation between childhood physical, sexual abuse and other inflicted emotional trauma and FM.
This is a rather popular theory that, while it sounds good on paper, is a house of cards to any serious researcher. Below is a short section of just a few of the studies done and the possible serious problems with them, mainly by the implications they present to the very doctors responsible for our care.
Traumatic Events, Health Outcomes, and Health Care Use in Patients with Fibromyalgia
"Methods: Participants were 600 members (95% females, 85% Caucasian, mean age = 54) of a health maintenance organization .... A self-administered questionnaire was used to assess a patient's trauma history.... the abused group of FM patients reported more symptoms such as pain, weakness, weight changes, and depression that did the FM patients who had not been abused. Their conclusions ... that sexual abuse was associated with more severe symptoms of FM .... Abstract
Chronic pain and health care utilization in women with a history of childhood sexual abuse
"Subjects: Three groups, constituting 80 women in total,... attendees at group therapy for childhood sexual abuse. Two control groups consisting of non abused psychiatric out patients and nurses. Measures: ...completed questionnaires documenting history of childhood abuse, pain, psychological symptomatology and medical history. Results: Sixty-nine percent of the women who had experienced childhood sexual abuse, reported a chronic painful condition lasting more than three months, compared to 43% of the combined control groups. Conclusions: Women with a history of childhood sexual abuse reported more chronic pain symptoms and utilized more health care resources compared to non abused control subjects." Abstract
The prevalence of sexual abuse in women with fibromyalgia. Taylor ML et al.
"METHODS. A self-administered questionnaire designed to obtain information regarding demographics, health care utilization, and history of sexual and physical abuse was completed by 40 women with FM and by 42 women who had no evidence of connective tissue disease or other major medical condition. RESULTS. Women with FM reported more physical symptoms and were significantly different on multiple indices of health compared with controls. Twenty-six FM subjects (65%) reported sexual abuse, in comparison with 22 controls (52%). The prevalence and type of abuse were not significantly different between groups. Sexually abused FM subjects reported significantly more symptoms than did non-sexually abused FM women..." Abstract
Comorbid Depression and Anxiety in Fibromyalgia Syndrome: Relationship to Somatic and Psychosocial Variables
"METHOD: One-hundred fifteen patients with FMS participated in the Structured Clinical Interview for DSM-IV to assess current mental disorders. In addition, patients completed standardized questionnaires regarding pain, pain impact, anxiety, depression, post traumatic stress disorder-like symptoms, and sexual and physical abuse"... In this sample of patients with FMS, 40.9% reported sexual abuse and 20.9% physical abuse in childhood. Abstract
There are many many others, just like these.
Several things are important to note about some of these studies.
Notice, the difference between FMers and the controls, even in a clinical setting. Is that those who have suffered abuse, who also have FM, are a small fraction, which in most research circles is enough to be able to say, there maybe a possible correlation, but it is not enough to reach firm conclusions.
To be charitable, most are trying to point out that the treatment of FM, should take prior abuse into consideration and do not say outright, that FM is "caused" by abuse. However, by the means of their presentation, a great many things are implied.
The implication is, since a percentage of FMers have suffered rape, sexual abuse, childhood abuse etc. that this finding is somehow "significant", when in fact, it's largely incidental, as you could find the same percentages, in the general population of healthy people. This bringing to fore, of the numbers and presenting them as somehow relevant, is the same tendency as is seen when studies are done in FM and depression on site link.
That yes, you can say that there are X percentage who fit the definition, but, that fact is often not really that relevant. How it is presented however, makes it seem like it's a great deal more significant.
To say, that for example, 65% of a group with FM, had been abused, sounds a lot more potent, than saying, without all the percentage rates, and sub divisions, that out of 82 people studied, 26 were found to have FM and to have been abused Vs 22 who do not have FM, who were also abused. The numbers start to look a lot different at that point, as we are talking about only 6 more people here.
Most people don't read the entire study however, or spend time analyzing it. They skim though it, check the percentage numbers and mainly see the headline and the abstract. The headlines and abstracts most often imply that Fibromyalgia and other chronic pain states, are a result of abuse, and moreover, that such persons represent an "excessive" use of health care resources.
Most people by the way, includes other doctors, who are the ones such studies are published for. Which is what makes such studies and their presentation a problem as it influences, in a negative fashion, the very doctors we depend on for our care.
Again the question is still going begging here ... if FM is a matter of prior abuse, why don't the healthy controls have FM? What about the persons with FM, who have not experienced abuse ? What is the over all ratio of the general population, who have suffered sexual abuse ? Answer, they aren't consistently referenced in each study, as they tend to test and look for, sub sets, in a clinical setting.
Testing the subsets and the information gap:
In research parlance, there is always a main set, and a subset. The problem with many of the older "researches" into FM, and even some of the new ones, is that they are testing the subsets. There are many of them, such as:
Depressed leaving out non depressed
It's fairly easy to see how the results would be easy to misinterpret here, if one doesn't look at all the possible participants. However, most older research, discounted other subsets, as not clinically "significant." In short, they studied the subset that would give them the most backing for their theory. This is called, self-serving data analysis.
"Overeager researchers often tinker too much with the statistical variables of their analysis to coax any meaningful insight from their data sets. People are messing around with the data to find anything that seems significant, to show they have found something that is new and unusual." ... "One of the most troubling consequences of mistakes getting published is their propensity to linger long after the results are discredited, even being cited in future works, which perpetuates the error" SCIENCE JOURNAL
Now, is this common ? You bet, almost everyone does it. However, in medical affairs, when lives are on the line, such sloppy work cannot be allowed to stand unchallenged. Their very persistence is due to the fact that the medical community makes the assumption, that if it's published, it is good research. Sadly, this is all too often proved wrong, but the retractions are not as well published as the original. So the original is still thought of as valid.
Problems with statistical data:
This is the problem often seen with any kind of "statistical" study, as you have to ask the questions, who did the study ? Did they ask complete questions ? Did they ask leading questions? Who are their participants ? Who are the controls ? Are there controls ? Is the data subjective or objective ? Is the study repeatable by other researchers ?
As if you cannot answer those questions with viable answers, you have no idea what you really have, other than a mess of numbers, that might seem to back up whatever theory your presenting. Such, are the bane of any and all serious researchers. As they tend to contaminate the research pool, with what is in effect, junk information. Given how many such "studies" are out there, I would say the research pool needs a little chlorine. :)
It's rather easy really, to twist the data to say whatever you want it to say. Particularly if you do research to "prove" an assumption or statement, Vs do research of discovery, where you have no real assumed ideas, only questions you want to try and answer.
For example, in statistical analysis class in collage, we were given an assignment ... to postulate some sort of outrageous statement, and then find statistical data that would let us "prove" it.
I proved, using honest data, that it does NOT
snow, in Alaska.
Every single string of data I used to do it, was valid. But it was how
I represented it and put it together, that allowed me to make such a
statement and seemed
to be able to back it up. The assignment was to
show us, that all research has to follow certain guidelines and
and that the statistical data, must be presented in the right manner,
the "results" are meaningless and misleading.
Theories are often based on unfounded assumptions about Type A personalities:
"Fibromyalgia affects mainly Type A women, who lead busy, driven, tense and stressful lives."
"Almost all female fibromyalgia patients have a history of chronic overdoing."
"Muscle pain and fatigue seen in women with fibromyalgia, is due to emotional and physical stress."
"Fibromyalgia patients, show extensive maladaptive processes. Such as the inability to set boundaries and limits."
While it is true, that a goodly percentage of persons with FM, do tend to fit the personality type. What is not true, in any of these assumptions however, is their implications and what such statements tend to leave out. As all of these imply that since we are mostly type A personalities, we have somehow "brought this on ourselves."
Ok, lets see, if this is correct, then all Type A women, should come up with FM, right ? Well, that doesn't hold up, as there are plenty of Type A women out there, that are perfectly healthy people. This also does not address women with FM who are Type B personalities, or the children with FM, or Men, or.. you see my drift here. The assumptions over all, lack any real backing, as they don't include everybody with the disorder, just for starters.
So this is just another set of theories and assumptions, that don't hold up. In theory after theory, there seems to be a consorted attempt to blame FM on some personality trait, or behavioral issue. This gives rise to yet another theory and protocol.
Anyone with FM, or anyone with a chronic illness for that matter, does need to learn to manage the limits their disorder imposes, learn how to do things differently and learn things to avoid, to prevent flare ups on site link and more pain. All well and good and recommended, however ... the drawback to CBT as a theory is, while the basic ideas might be helpful ... as a stand alone treatment model, it doesn't work. Research and can create more problems that it solves, simply by what it implies.
Basics of CBT
This is just another form of blaming the person in my personal opinion, so ... what ? Now we supposedly have poor self control, negative self talk and have lousy problem solving skills ? We have to solve more problems before breakfast, just to be able to get out of bed and make breakfast on any given morning, than most people see all week. So that idea doesn't not even come close to our reality.
And the so called, power of positive thinking theory was shot down a long time ago. One cannot wish away FM or any other chronic pain issue. If we get a little negative once in a while, I think we have just cause to be. The old saying is," it's not slander, if it's the truth" but the bottom line ? Like most such things offered out as a solution, it's been diligently tried.
In tests in FM, ME, PMS, Ra, Lupus, etc. etc., the results of Cognitive-behavioral therapy ? "No significant difference between the experimental group and the control group on primary or secondary outcomes at any point." Research That pretty well sums it up now doesn't it !
The so called, 70% improvement rates presented for this protocal are misleading, as understand, all of the "good' results with CBT, are dealing primarily with clinically depressed persons who have no concomitant disorders. Where CBT is an adjutant to conventional medical treatment for their depression.
There is only a small sector of persons with FM, 18 to 25%, who fit the classic criteria for clinical depression, which is the same ratio of persons with other chronic ailments. And even for this sub set, the protocol ... fails.
In summation, yes, self help and learning to cope with a chronic illness, is a good idea and we all need to do that but ... Cognitive-behavioral therapy, by itself, is not a replacement for proper medical care. It is, by implication, yet another attack on our character and is telling us in effect, that we are all just depressed and that we just " have to learn to live with it." This is not only unacceptable, and not supported by research, it's an insult.