People with fibromyalgia, chronic fatigue syndrome or any of the related syndromes do have unique struggles that many people may not experience. These struggles are often more pronounced with the severity of their syndrome symptoms. These struggles are not only caused by the physical symptoms of their condition but also by the cognitive problems. On top of these difficulties is how people (family, friends, coworkers, medical providers and society in general) judge people with FM and CFS.
People with FM and CFS (as well as other related syndromes) experience pain, fatigue, nausea and other various symptoms which seems to fluctuate with the weather, their hormones, their emotions as well as other reasons which really have not been identified yet. Also the types of symptoms also seems to fluctuate (ex. one day it may be back pains the next flare up the stomach seems to be hurting the most, then the next time it may be severe fatigue, TMJ and pain in the legs). These problems are bad enough but then add the cognitive problems.
The cognitive problems also seems to fluctuate like the physical symptoms. Again not much is known about the etiology of the cognitive problems. There have been much research which shows that the brain doesn't get as much oxygen in certain areas, has more alpha waves and theta waves than normal brains. Alpha waves are relaxed awake waves and theta waves have been blamed for causing what is called "fibro fog". This is frustrating for sufferers when their brain does not think or work clearly. You can think of it as comparing nice fresh clean air (normal brain) to the polluted foggy high ozone level air over a large city (fibro fog). The fibro fog brain can be described as a "dysfunctional brain" (how a researcher described my sister's brain). It seems that each person with FM experiences a variety of cognitive symptoms but again everyone with FM does not experience the same exact symptoms to the same degree. However research does show it effects what is called the executive functions of the brain (processing information and memory). They have problems articulating their thoughts and pronouncing words as if they forget what a word is or how to pronounce it. Their immediate or working memory seems to quit working. (Ex. subtract 7 from 900 & keep subtracting 7 from the answer.) Most people (with adequate math skills) can do this without much difficulty however this would be extremely difficult for a person with these memory and cognitive problems. They also may experience concentration problems which only add to the problems. Another problem is they are forgetful or seem to miss things people say or they hear on TV or the radio simply because their brain did not take in the information. Again this is due to their working memory not working.
To help you understand this concept I'll explain the types of memory. Most people are familar with short term and long term memory. Short term memory is where you first put information once you acquire it (hear, read or experience it). This may be the interesting things you learn about such as a precular plant, news story or friend's party you're invited to. This information then goes to long term memory. Can you tell me what you had for dinner last night? This is in long term memory. Now they say that every thing we experience goes into long term memory and is stored in the brain. (When neurosurgeons stimulate parts of a patient's brain in surgery and the patient relives or recalls an old long forgotten experience or fact, this is evidence this information is never gone.) But why do we not all remember everything we ever learned? It would be nice but this is apparently related to the retrieval system in the brain. However with FM and CFS (and others with poor working memory), they can not retrieve the information because it was never processed. The working memory is where the information is taken in and processed. It's like an ear with neurological damage, a hearing aid can not help the ear to hear. What causes this working memory problem? Good research question.
These cognitive problems are extremely frustrating because the FM and CFS sufferer knows they are not functioning at the cognitive level they use to. However as evidenced by the TV ads for herbal suppliments to improve memory and mental alertness, news stories related to baby boomers and memory, and people in general commenting on their poor memory, people may just contribute FM and CFS complaints of memory problems as no different than every one else. So what you lost your car keys, everyone looses theirs. "You can't remember a person's name, everyone forgets people's names." This only adds to the CFS and FM person's level of frustration and depression. The big difference between FM and CFS and the general population is the FM and CFS cognitive problems are worse than the average healthy person (unless you have ADHD or ADD). Other medical conditions can cause similar cognitive problems also.
Another common problem is anxiety likely related to the abnormal hypersensitivity of the nervous system. What is known as the flight or fight response is triggered. Normally this response is alerted when the person feels threaten (ex. you are involved in an auto accident or see a tornado headed your way). In other words, when you feel you are in immediate danger or are afraid of some impending danger. Your body goes on high alert. Your body releases hormones (Adrenaline and cotisone) needed to cope with the danger which makes you feel more alert and ready to fight or run for safety. There are generally some unpleasant symptoms related to this such as racing pounding heart, increased breathing, nervous uptight stomach causing decrease appetite, fear or anxiety, and increased emotions. This is a normal natural response but in FM this response is often triggered without an outside cause and may be prolonged. The effects of the increased levels of these hormones can lead to other physical problems compounding the FM. The person with FM may feel a sense of nervousness or their nerves are "fried". (Thyroid disease can cause similar response until the thyroid disease is properly treated.) Again this can be distressing to the person suffering from FM.
With all of these problems the person with FM may feel extremely frustrated, misunderstood, rejected, angry, hurt, depressed (some even suicidal), and confused. They know something is not right but often get the message "you're lazy", "you're crazy", "nothing is wrong with you", "you look just fine". If they do not have a superior coping and problem solving skills then it is really difficult for them to live each day, especially if their FM symptoms are debilitating.
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