A Little Something to Help You Get Started Thinking About
(Kitchener-Waterloo Fibromyalgia Newsletter)
You know you have fibrofog when......
You boil the kettle dry three times to get one cup of tea.
You read a note you wrote to yourself to pay a bill, and you wonder who the heck is Bill.
You call the school twice, to let them know your child is at home sick.
You can't disconnect the dishwasher from the kitchen tap, because you didn't turn the water off first to release the pressure.
Many people with Fibromyalgia like to make jokes about Fibro Fog because it's often embarrassing and even frightening. A common scenario: You're having a conversation with someone when suddenly, in the middle of the sentence that's coming out of your mouth, your brain seems to turn itself off. Your mouth hangs open as you desperately search for what you were just saying two seconds ago. But it's no use. Where there once was a clear distinguishable thought in your head, there is nothing left but a vacuous black hole of nothingness. This kind of short-term memory loss is experienced by every Fibromyalgic.
"The wheel is turning, but the hamster left town," as Devin Starlanyl and Mary Ellen Copeland put it in their book, Fibromyalgia and Chronic Myofascial Pain: A Survival Manual, which devotes an entire chapter to Fibro Fog and other cognitive deficits. "You may spend hours every day trying to find various items, like your keys. (After a while, you may feel as though your mind is one of those misplaced items.) You may not recognize things when they are right in front of you but are not in their accustomed place, or when it's in a different package or form."
Research at the University of Michigan has validated the reality of fibro fog. The researchers observed a similarity between neuroendocrine dysfunction in patients with FM and older but otherwise healthy people. They compared three groups of people: First, a group of people with FM. Second, a control group of healthy people who were similar to those with FM in age and educational background. And third, a group of healthy people with similar educational backgrounds as the others, but who were 20 years older than the other two groups. Because cognitive function begins to decrease, even in healthy people, as soon as adulthood is reached, the three groups were given various age-sensitive neuropsychological testing to see the extent to which Fibromyalgia affected cognitive dysfunction as compared to the normal cognitive loss caused by aging.
The researchers found that people with Fibromyalgia do not have the same mental agility as healthy people of the same age. Their verbal fluency, long-term memory, and working memory (how much information you can use, manipulate and store at one time) was at the same level of capability as those in the older group. The people with Fibromyalgia performed even worse, scoring lower than the older group and showing a serious deficit when it came to vocabulary, a cognitive function that doesn't normally decline with age.
The findings of this research is important in two ways: First, it validates cognitive deficits in people with Fibromyalgia. Second, whatever is going on to cause the cognitive deficits in people with FM, it is not the same as that which occurs with natural aging. (See: Starlanyl & Copeland, 17:203)
Another study done in 1999 by Glass, Park and Crofford researched metamemory, which is our ability to accurately assess our own memory skills. The three researchers used a control group and a third older group of people, just as in the reported study above. Not only were the three scientists after how well Fibromyalgics could assess their own memory skills, they also wanted to rule out depression and poor motivation as possible causes of cognitive dysfunction. The FM patients were asked how well they felt they could perform simple tasks, such as dialing a telephone and shopping for a few items without a list. The Fibro patients reported lower memory capacity, less control over their memory function, more cognitive deficits, and greater memory deterioration than the older group. The study found that the people with Fibromyalgia were entirely accurate in their assessments. In fact, the Fibro patients used more memory improvement strategies, like lists and calendars, and were more highly motivated as to the importance of keeping a good memory, and although they had more anxiety about memory function than the other two groups, their cognitive dysfunction was not a result of depression.
"These patients were trying to make the most of what they have in every way they knew how. They reported a greater perception of loss than the older control group did, even though their memory loss was similar," says Starlanyl and Copeland, who also report that the study found "this as an accurate perception, since the cognitive function of the FM patients is not age-appropriate." (See: 17:203).
And let's not forget that on top of this general deficit of cognitive function every Fibromyalgic has, there are also those "attacks" of Fibro Fog. Not only can Fibro Fog vary in severity among people with Fibromyalgia but it also can vary in intensity with each individual from hour-to-hour, day-to-day, month-to-month etc. There's no telling when a particular nasty "attack" of Fibro Fog will hit on top of the every day cognitive problems of someone with FM.
This particularly nasty symptom of Fibromyalgia can range from forgetfulness and being muddled headed, like finding your wallet in the refrigerator, to a state that is quite severe. For instance, someone with an extreme case of Fibro Fog might be returning home from the grocery store they've been going to for the last 10 years. They'll be traveling the same route home they take every single time they go to their grocery store. Suddenly, nothing seems familiar. They don't recognize landmarks and everything looks different. They very easily become lost, traveling round in circles or worse, "coming to" in another town or city entirely.
There are a few theories as to why FM sufferers experience Fibro Fog. John Lowe believes the Fibromyalgic's brain receives an insufficient delivery of oxygen, glucose, and other substances the brain needs to function properly. Inadequate thyroid hormone regulation may be causing the metabolic rate and the flow of blood to the brain cells to be defective as well. (See: Wrutniak-Cabello, C., F. Casas, and G. Cabello. 2001. Thyroid hormone action in mitochondreia. J Mol Endocrinol 26(1): 67-77.)
Research conducted with Single Photon Emission Tomography scans show that people with FM have decreased blood flow in the right caudate nucleus of the brain and also in the left and right thalami. It's speculated that the decreased blood flow could be caused by a neurotransmitter dysfunction or by a problem in the glial cells. Glial cells are crucial to our brains because they're active in brain cell permeability, meaning they allow much needed substances to pass into the brain's cells, such as electrical ions. Without this permeability, brain function deteriorates.
There's also a bioelectric connection between glial cells, ion exchange, and cellular swelling in the brain. Because the glial cells have such an increased permeability in the brain of a Fibromyalgic, far too much fluid is allowed into the brain cells. These swollen cells not only account for migraines (where the menningeal blood vessels become hyperpermeable), a common accompanying illness many Fibromyalgics suffer, but also for a generalized increased pressure, which in turn affects cognitive processes. Therefore, these defective cognitive processes, or Fibro Fog, may be due to this flooding of the brain cells and could account for reports from those suffering with FM that their brains feel swollen. In fact, Starlanyl and Copeland say perhaps the brain is really physically swollen. (See: 17:201) But how does Fibro Fog physically feel to a Fibromyalgic that is suffering from it? The sensation, many patients report, feels like the brain has become very heavy and big and slow in a suddenly too small skull.
With migraines, this sensation of heaviness and largeness can grow and grow, until the brain feels like it is trying to push against the inside of the skull and any minute the head will explode. The pressure inside the skull is enormous and in many will cause actual swelling of facial features, protruding eyes and swollen gums. Obviously this is all excruciatingly painful. In fact, it is not all that uncommon for someone with a migraine to have the urge to or actually physically hit their head against a wall repeatedly in a useless attempt to rid their heads of the pressure from the swollen brain cells. Motor actions degenerate and to move their head even slightly brings monumental amounts of pain cracking through their brain and skull. The swollen, pressured brain cells can also cause sensory malfunctions like double vision, extreme sensitivity to light and sound, halo-like rings around light sources, patches of white or black in the vision field and much more.
Starlanyl and Copeland also report that a Fibromyalgic's chronic pain itself could be affecting their cognitive abilities: "In one study, researchers found that some chronic pain patients performed some tests more poorly than patients with head injuries. This study suggests that pain can disrupt cognitive performances that depend on intact speed and storage capacity for information processing. Processing pain occupies most or all of our thought processing networks, thereby interfering with concurrent cognitive tasks such as thinking, reasoning, and remembering." (See: 17:201)
In other words, if someone with FM suffers an increase in their pain levels, like they commonly do in the morning, tasks like picking out what clothes to wear can become mind boggling and an insurmountable job.
Some people can spend days at a time in a Fibro Fog with their cognitive deficits worsening: Unable to speak correctly. Unable to read or to write a sentence a child could do. Unable to remember familiar things like the names of relatives or how to spell "cat". Unable to turn on the stove not only because they forget the mechanics, but also out of the fear they'll forget they're cooking something and start a fire. Unable to remember things, looking everywhere for their cars keys until they're exhausted and can't go out to do their errands and then finding the keys by accident in the freezer with the ice cream they bought two days ago. Unable to take the same amount of sensory input someone who doesn't suffer from Fibromyalgia can, such as exposure to large crowds, or a lot of noise, or the multitudes of visual and physical actions of driving for hours on end, especially at night when light sensitivity makes it an even more difficult task. Unable to concentrate or socially interact because their intense amounts of pain are interfering with their cognitive skills to the point of distraction. Unable to do all of these things just listed and so much more because their minds function at a cognitive level worse than someone far older than them. And take note that all these many negative and life restricting things listed and described as belonging to someone suffering with Fibromyalgia only focuses on what Fibro Fog does to them. All the other symptoms and difficulties, which descend on someone with Fibromyalgia, like extreme pain and chronic fatigue to name only two of the dozens a Fibromyalgic can suffer from, were not even taken into consideration when describing how a Fibromyalgic lives a limited, constricted and socially isolating life.