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Page: Signs and Symptoms
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Onset
The majority of CFS cases begin after a period of stress in the year preceding the illness. Some cases of CFS start gradually, but the majority start suddenly, often triggered by a flu-like viral or similar illness. People with CFS may improve or recover after several months, or many years, or not at all. It is not known whether any CFS sufferer has truly recovered to pre-illness levels, or whether their symptoms have merely subsided enough for them to live a more normal life. Some sufferers have a remission for months or years only to later relapse, often more severely.
Sudden onset cases
Many people with CFS report a sudden, drastic start to their illness. Some people can remember a specific day or even hour when they first became ill. Often CFS starts with, or is triggered by, another illness. Many people report getting a case of the flu, exposure to an allergen (a cough or sniffle caused by paint, a new pet, or construction dust), or a severe infection such as bronchitis, from which they seem never to fully recover and which slowly evolves into CFS. Some patients claim that vaccination, especially with recombinant vaccine against hepatitis B, is another cause of acute onset CFS. Other patients begin with Lyme disease, which despite a standard course of treatment, may 'evolve' clinically from the symptoms of acute Lyme to those of CFS. Because CFS symptoms bear a striking similarity to those of late-stage Lyme disease, this has become an area of great controversy. (see Lyme disease controversy). Other, noninfectious triggers may include car accidents, moving house, and stressful life situations. Some patients say they felt unusual or uneasy for a short period (days or weeks) before the onset.
Gradual onset
Other cases have a very slow, gradual onset, sometimes spread over years. People with gradual onsets may not realize there is anything wrong for quite some time. Patients may believe they have a minor illness, or ascribe their weakened condition to stress, and assume they will improve with time. It is only when the patient realized that their condition is truly debilitating, or the stress is removed and the symptoms remain, that the patient will begin to seek treatment. There is no standard course for CFS. For a patient to be officially diagnosed with chronic fatigue syndrome, the symptoms must have persisted for at least six months. However, the Fukuda paper also contains a definition of "chronic fatigue" which is reserved for those who do not meet the full criteria for CFS. Since the 50% rule of Holmes et al was dropped, it is possible that there are people with CFS whose level of disability is so low that they never seek treatment, or receive an accurate diagnosis, though this is not permitted by the Canadian definition.
Chronic symptoms
According to the 1994 Fukuda definition there are eight main categories of symptoms in CFS:
* Fatigue: People with CFS experience profound, overwhelming exhaustion, both mental and physical, which is worsened by exertion, and is not relieved (or not completely relieved) by rest. To receive a diagnosis of CFS, this fatigue state must last for six months.
* Pain: Pain in CFS may include muscle pain, joint pain (without joint swelling or redness, and may be transitory), headaches (particularly of a new type, severity, or duration), lymph node pain, sore throats, and abdominal pain (often as a symptom of irritable bowel syndrome). Patients also report bone, eye and testicular pain, neuralgia and painful skin sensitivity. Chest pain has been attributed variously to microvascular disease or cardiomyopathy by researchers, and many patients also report painful tachycardia.
* Cognitive problems: people with CFS may experience forgetfulness, confusion, difficulty thinking, concentration difficulties, and "mental fatigue" or "brain fog." Additional signs may be experienced; in the 2003 Canadian Definition these include aphasia, agnosia, and loss of cognitive body map. The verbal working memory of people with CFS has been shown under fMRI to be affected, resulting in altered brain function when performing certain tasks, especially as they got more demanding.
* Hypersensitivity: people with CFS are often sensitive to light, sound, and multiple chemicals and foods. Many CFS patients report an increase in allergic-type sensitivity to foods, scents, and chemicals, and many also report a sensitivity to medications, which can complicate treatment. Patients with pre-existing allergies, asthma, and similar conditions often report a worsening of symptoms. Sensory overload is commonly reported by patients, leading to increased fatigue and even migraine or seizures.
* Poor temperature control: people with CFS often report either feeling too hot or too cold, possibly due to involvement of the hypothalamus, which regulates body temperature. Many CFS patients frequently run a low fever, or report fever-like symptoms (sweating, feeling too hot or cold, etc.) without measurable fever temperature.
* Sleep problems: "Unrefreshing sleep" and rest is a hallmark of CFS, and insomnia is also common. Maintaining a sleep schedule is extremely difficult for many patients. Vivid, "feverish" dreams are a symptom in many people with CFS, exacerbating disturbed sleep patterns. Patients report that exercise, unlike in healthy persons, worsens the insomnia and unrefreshing sleep symptoms alike.
* Psychological/Psychiatric symptoms: emotional lability, anxiety, depression, irritability, and sometimes a curious emotional "flattening" (most likely due to exhaustion), may manifest in CFS patients. Many of these symptoms can be directly caused by the CFS mechanism or, in some cases, may be secondary symptoms created by the syndrome, as many chronic pain or illness patients also show similar psychiatric issues. CFS patients with pre-existing psychiatric symptoms may report that these worsen with the onset of CFS. Treatment for psychiatric symptoms alone does not generally relieve the physical symptoms of CFS.
* Disturbances in the autonomic nervous system and hormones:
o People with CFS often have abnormalities in the autonomic nervous system such as low blood volume, orthostatic intolerance, dizziness and light-headedness, especially when standing up quickly.
o Hormonal abnormalities may include abnormal vasopressin metabolism and a blunted ACTH response, leading to hypothyroidism and/or low cortisol and reduced ability to respond to physiological and emotional stress. Patients sometimes show abnormally low levels of testosterone, growth hormone and other important hormones.
Activity levels
Activity levels vary widely among CFS patients. While some are able to lead a relatively normal life, others are totally bed-bound and unable to care for themselves. Almost all patients find they must drastically reduce their activity from pre-illness levels, regardless of their previous level of athleticism, and must severely modify or give up physical hobbies and exercise. Many patients find themselves unable to work full-time, or at all. A considerable number of CFS cases in many countries are on disability benefits or private insurance, or have made claims and been denied. One notable CFS sufferer is soccer legend Michelle Akers, who reported struggling with the illness for many of the later years of her career. However, more severe sufferers felt that an active professional athlete "poster child" like Akers helped to trivialize the syndrome in the eyes of the public, and made it much more difficult for highly incapacitated patients to be taken seriously. It is worth noting that the condition can strike persons of all activity levels, and that patients may have had high levels of physical health and activity before onset. Another sufferer was Stuart Murdoch of the Scottish indie-rock band, Belle & Sebastian. Murdoch was afflicted before graduating from university and was unable to work. He has commented that the degree of isolation he suffered directly contributed to his strong Christian faith and his choice to become a song-writer and singer.
Post-exertion symptom exacerbation
One of the most common and recognizable aspects of CFS is what is called "post-exertional malaise". When people with CFS exert themselves beyond their limits (and their limits may change daily), their symptoms worsen. Exertion includes cognitive effort. The harder the exertion and the longer it lasts, the worse the symptoms will be afterward, and with greater recovery time. Although symptoms may increase immediately and proportionally, usually their full extent is delayed by 24 or more hours, which can make judging appropriate activity difficult. A cyclical pattern can occur when patients work harder because they "feel better" or are having a "good day," leading them to think they can exert themselves more than usual. However, the excess exertion leads to worse symptoms on the following day. Thus it is difficult for patients to maintain an even level of activity, or to tell if they are improving. In sufferers without a diagnosis of CFS, or a proper understanding of how CFS affects exertion, this can lead to a "downward spiral," where a sufferer will try to work harder to make up for the previous day's lack instead of resting. This exhausts them further, and often can trigger a relapse or worsening of their condition. If the original exertion, which can be physical or mental in nature, was particularly severe, the sufferer may deteriorate to a point where they are unable to care for themselves. Many cases then result in hospitalisation because the condition has deteriorated a great deal. However, it must be noted that patients may deteriorate due to external stressors, complications, co-morbid illness, or for unknown reasons, and in those cases, patient exertion cannot be blamed for a patient's deterioration. Also, some patients have a progressive course which cannot be explained through activity levels. When the illness is coupled with unaccommodating family, friends, colleagues, often due to stigma, and social repercussions such as financial needs, housing problems, the struggle to obtain disability benefits or insurance, discrimination and misconception within the care sector, it can put demands on the sufferer exceeding their safe capabilities. Many sufferers describe needing to do things for themselves in the times they feel better simply because there is no-one to delegate to. The CDC, using DNA microarray analysis, has recently determined that patients with CFS have specific deficiencies in expression of multiple genes which are involved in energy metabolism and oxygen consumption. The gene expression deficit becomes accentuated when CFS patients perform on treadmills. The conclusion of this research is: "These results highlight the potential use of an exercise challenge combined with microarray gene expression analysis in identifying gene ontologies associated with CFS."
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Important notice:
The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other
qualified health provider with any questions you may have regarding a medical condition.
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