Presentation Course Of The Illness Prognosis
Myalgic encephalomyelitis/chronic fatigue syndrome can begin suddenly, gradually, or with an abrupt increase in the intensity and frequency of milder chronic symptoms. There can be a history of repeated minor relapsing and remitting prodromal illnesses over the months or years preceding the onset. An acute onset of fever and viral-like symptoms is common, and the onset also can be marked by severe orthostatic symptoms. ME/CFS can follow a known illness such as infectious mononucleosis . A gradual onset is more common in younger children and can occur over months or years.
While all patients experience a substantial loss of physical and cognitive functioning, there is a wide spectrum of severity. Mildly affected young people might be able to attend school full-time or part-time, but they might have to limit sport and after-school activities and have frequent school absences. ME/CFS has been found to be the most common cause of long-term absence from school . More severely affected young people can be wheelchair dependent, housebound, or bedbound. The more impaired might even have difficulty participating in home tutoring sessions. In young persons with ME/CFS, overall self-reported quality of life is often lower than in other illnesses such as diabetes, epilepsy, and cystic fibrosis .
Me Association: Sleep Disturbance In Me/cfs
Extract taken from the authoritative and very popular MEA Clinical and Research Guide 2020 , section 5.12 .
ME/CFS patients may complain of excessive sleep/hypersomnia in the early stages of their illness. This is often followed by a general decrease in sleep efficiency once the illness enters a more chronic stage.
Reported sleep disturbances include difficulty in initiating sleep, frequent waking during the night and vivid dreams. Periodic limb movements during sleep and restless legs syndrome are also quite frequently reported.
Overall, the result is what many people with ME/CFS describe as unrefreshing sleep. A variety of abnormalities in normal sleep patterns, which may act as perpetuating factors, have been reported in ME/CFS patients.
These include changes in alpha nonrapid eye movement and blunted slow-wave activity in a twin study in response to a sleep challenge the latter results suggesting that a normal homeostatic response is impaired.
Another study found very little evidence to support the hypothesis that ME/CFS patients with a concurrent diagnosis of anxiety, depression or somatisation disorder have any more sleep disorders than those with no psychiatric disorder.
So, it appears that sleep disorder in ME/CFS is an integral part of the disease process.
Talk To Your Doctor About Chronic Fatigue Syndrome
If you suspect you may have ME/CFS, consult your doctor. You might keep an activity log or health journal to note changes in your wellbeing and help your physician understand your situation. With the aid of your physician, you can eliminate other possible causes of your fatigue. Then, together you can develop a plan for treatment and relief of symptoms.
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Treating The Most Disruptive Symptoms First And Preventing Worsening Of Symptoms
Healthcare providers and patients need to establish which symptoms are most disruptive or disabling and tailor management plans accordingly. Treatment should be directed toward the most problematic symptoms as prioritized by the patient. It is also important to incorporate strategies to prevent worsening of symptoms into initial and subsequent treatment plans.
Fukuda Research Case Definition For Chronic Fatigue Syndrome
Patients can be classified as having CFS if they meet the following criteria:
1. The individual has had severe, clinically evaluated, persisting or relapsing fatigue for six or more consecutive months. The fatigue is not due to ongoing exertion or other medical conditions associated with fatigue. The fatigue significantly interferes with daily activities and work.
2. The individual has four or more of the following symptoms, persisting, or relapsing and concurrent with the fatigue:
Post-exertional malaise lasting more than 24 h
Significant impairment of short-term memory or concentration
Pain in the joints without swelling or redness
Headaches of a new type, pattern, or severity
Tender lymph nodes in the neck or armpit
A sore throat that is frequent or recurring
3. A thorough medical history, physical examination, mental status examination, and laboratory tests are necessary to identify other conditions with similar symptoms that require treatment. The diagnosis of chronic fatigue syndrome cannot be made without such an evaluation.
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The Mystery Behind Idiopathic Hypersomnia
Idiopathic hypersomnia is a rare neurological disorder. Treatment can help, but theres no cure. You may snooze upwards of 9 hours a night without feeling refreshed. You may fight to wake up in the morning. Your sleepiness may persist or get worse, even when you take lengthy naps during the day.
If you live with IH, youd probably like to know whats causing your symptoms. Unfortunately, thats not something experts have figured out yet.
Literally, the name idiopathic hypersomnia means youre sleepy and we dont know why, says Sabra Abbott, MD, assistant professor of neurology and sleep medicine at Northwestern University Feinberg School of Medicine in Chicago.
Lots of sleep specialists are trying to solve the IH puzzle, including Lynn Marie Trotti, MD, associate professor of neurology at Emory University School of Medicine in Atlanta. Sleep disorders tend to run in families, so your genes likely have something to do with it. But Trotti says she and her colleagues still dont know the main source of all this extra sleepiness.
The big mystery really is what causes idiopathic hypersomnia, Trotti says.
Fibromyalgia Chronic Fatigue And Chronic Fatigue Syndrome
Editors Note: This article is excerpted from Dr. Goldenbergs new book, Chronic Widespread Pain: Lessons Learned from Fibromyalgia and Related Disorders. To purchase the entire e-book, go to ppmjournal.com/fibro and use the promo code READPPM for a 15% discount.
Persistent exhaustion is almost always present in patients with fibromyalgia and is prominent in each of the overlapping chronic functional illnesses, including irritable bowel syndrome , chronic migraine, and chronic bladder and pelvic pain. Unfortunately, there is no universal definition of what constitutes pathologic fatigue. The most common description of excess fatigue suggests that it is an extreme and persistent form of mental and/or physical tiredness, weakness, or exhaustion.
Chronic fatigue, like chronic pain, is a common symptom in the general population, with prevalence estimates between 10% and 40%.
Chronic fatigue, like chronic pain, is a common symptom in the general population, with prevalence estimates between 10% and 40%. In 1 study, nearly 20% of 31,000 men and women in a general practice reported substantial fatigue lasting 6 months or longer.2 During the past decade, most studies have defined chronic fatigue as fatigue lasting 6 months or longer with fatigue scores of 8 or greater on the Fatigue Scale.3 Women are more likely to report fatigue and more often report severe fatigue.2-4 The prevalence of fatigue was 30% in older women compared with 15% in older men.5
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Forms Of Oi In Me/cfs
Orthostatic hypotension is defined by a sustained BP reduction of at least 20 mm Hg systolic or 10 mm Hg diastolic during the first 3 min after assuming an upright posture . This problem is rarely seen in children except at times of febrile illness, acute dehydration, hemorrhage, adrenal insufficiency, excessive histamine release, or as a response to certain medications.
A more common pediatric variant, termed initial orthostatic hypotension , is characterized by a transient drop in BP immediately after standing, but resolving within 60 s. Its recognition requires a continuous beat-to-beat BP measurement device. The diagnosis is missed by standard, automated sphygmomanometer measurements . Although this is not usually a condition that requires clinical treatment, chronic orthostatic symptoms in those with IOH have been reported , suggesting that they can develop other orthostatic abnormalities on more prolonged monitoring.
Postural Tachycardia Syndrome
Postural tachycardia syndrome is increasingly being recognized as the most common form of OI in pediatric ME/CFS. As is the case for pediatric ME/CFS, postural tachycardia syndrome is more common in females than males, is more common after the onset of puberty, and often follows an apparent infectious illness .
Neurally Mediated Hypotension
The Acute Stage Of Me/cfs
In the early, acute, febrile stage of ME/CFS, the diagnosis can be uncertain and other causes of fever need to be considered. Adequate rest and activity management are the mainstays of treatment. Premature resumption of activity or attempts to return to school can result in a relapse or increased severity of symptoms.
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Relationship Between The School The Student The Family And The Treating Physician
During regular appointments with the young patient, the physician should ask how school is going. The clinician needs to be sensitive to the relationship between the young person, her/his parents, and the school. Many families have followed a long and circuitous route to a diagnosis and the young patient can be months or years behind in school by the time a diagnosis is reached. The young patient and parents often perceive dealing with the school to be very stressful, especially so when they face disbelief about their invisible illness from teachers, other parents, and the young patients classmates . Compounding these stresses, parents see that their childs academic performance has deteriorated and they might fear that she/he will not receive an education that eventually allows for employment and independent living. Many parents need to place their own lives and/or careers on hold in order to stay at home and take care of the young person. If both parents need to work, that can be problematic for the young patient at home alone.
Cognitive And Somatic Symptoms
Some somatic problems regarding the autonomic nervous system have already been described in hypersomnia . In this study, some functional equivalents are indeed more frequent in hypersomniacs than in controls, while there is no more headache in the patient group. In addition, half of the hypersomniacs are near-sighted, 38% are allergic and 25% have problems regulating their temperature. The mechanism of these symptoms is unknown, they could contribute to the burden of the disease.
The symptoms reported in this article are subjective, which constitutes a limitation of this work. There is no formal testing of the cognitive status by a neuropsychologist, no measure of supine hypotension, no systematic sight assessment in the controls, so that a bias towards over-reporting in patients is still possible. The questionnaire is, however, the same for any subject, whether hypersomniac or not. On the contrary, we try to catch the somatic problems of the patients, which are by definition subjective.
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Ask The Doctor: Ih Cfs And Fibromyalgia How Do They Differ
Lynn Marie Trotti, MD, MSc, of Emory University, and the Chair of our MAB
Whats the difference between chronic fatigue syndrome and idiopathic hypersomnia ? How do they differ from fibromyalgia? And how many people with IH also have CFS or fibromyalgia? A medical expert explains! We are very pleased to have Lynn Marie Trotti, MD, MSc, of Emory University, and the Chair of our Medical Advisory Board, answer these questions.
QUESTION: Whats the difference between chronic fatigue syndrome and idiopathic hypersomnia ? Is it just sleep attacks? Or is it part of the differential diagnosis? What about fibromyalgia? How does the medical community differentiate between these 3 diseases? How many patients with IH ALSO have fibromyalgia or CFS?
Diagnosis of IH also requires sleep testing. This can include any of three tests: a multiple sleep latency test, a 24-hour sleep study, or actigraphy . At least one of these three tests usually is abnormal in people with IH. These tests have not been studied as extensively in people with chronic fatigue, as none of these tests are used for chronic fatigue diagnosis.
Physiologic Responses To Upright Posture
In response to standing, approximately 500750 mL of an adults blood volume is redistributed to vessels below the level of the heart. A similar circulatory change is thought to occur in adolescents. At all ages, the response to the gravitational pooling of blood is a reduction in blood return to the heart, in turn leading to a drop in cardiac output, less stretch of baroreceptors, and ultimately less blood flow to the brain. The nervous system response involves an increase in sympathetic neural outflow, improved vasoconstriction, up to a 40 bpm increase in HR, and the return of enough venous blood to maintain BP and cerebral perfusion . Symptoms of OI can appear when these adjustments do not occur in an efficient manner.
Figure A1. The three main pathophysiologic influences on orthostatic intolerance are shown in this Figure. Increased pooling of blood, or defective vasoconstriction in the lower half of the body, along with lower intravascular volume are each important, and can be present in the same individual. Upon assumption of an upright posture, exaggerated sympathetic nervous system and adrenal hormone responses lead to increased release of epinephrine and norepinephrine . It is postulated that the relative balance of NE to Epi is one factor in determining whether the phenotype of OI is POTS or neurally mediated hypotension . Some patients with POTS in the early phase of orthostatic testing go on to develop a classic NMH pattern later in the test.
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Chronic Fatigue Vs Idiopathic Hypersomnia
Since IH is a bit of a mystery, it can go undiagnosed for a long time. It can seem like other conditions. That might have something to do with how we think and talk about sleep. You might hear people use terms like “fatigue” and “sleepiness” interchangeably, but they arent the same thing.
Heres how Trotti explains the difference: Hypersomnia means you either sleep too long or you fall asleep when you shouldnt, such as taking naps during the day. Fatigue, on the other hand, is a weariness or lack of energy that doesnt tend to raise your sleep time.
With that said, Trotti says about 20% of people with hypersomnia also have chronic fatigue syndrome. But a careful history of your symptoms can help your doctor figure out whats going on.
They might ask:
Cortisol Pain Exertion And Cfs
A number of reports suggest cortisol levels may be a marker for neuroendocrine dysfunction in CFS.49-51 One study found that salivary cortisol levels were significantly lower in CFS patients than in healthy controls.49 Depressed cortisol levels correlated with decreased sleep in these adolescent patients with CFS. Similarly, altered cortisol responsiveness was noted in patients with CFS who exhibited a heightened response to exhaustion following exertion.50
Meeus et al continued an exploration of pain in patients with CFS by focusing on cortisol levels to assess intensity of pain.51 Responses of CSF patients with chronic pain were evaluated for evidence of deficient endogenous pain inhibition as the cause of their chronic widespread pain, using an immersion test. The authors found that pain inhibition began more slowly in patients with CFS than healthy controls, and they concluded that the delayed response may help explain the chronic, widespread pain commonly experienced in patients with CFS,51 and by extension FM.
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Impact Of Me/cfs Symptoms On Learning
Several prominent ME/CFS symptoms affect the students ability to learn. Cognitive problems are evident in most students even if they are less severely affected. Students experience mental confusion, forgetfulness, difficulty concentrating, a short attention span and a slowing of mental processing speed. Working memory can be significantly reduced and there is often increased distractibility, which can be exacerbated by noise in the classroom . IQ scores might be lower than the scores of healthy peers . Cognitive problems can sometimes mimic attention deficit disorder without hyperactivity. For those with more severe illness, cognitive problems are very limiting. Generally, if students are homebound, the most that they can manage are one or two essential or core subjects. Although not easy and requiring a real commitment, completing school work can give the student a real sense of achievement, which is important. The homebound student usually needs regular help from someone such as a Visiting/Homebound Teacher.
Students with ME/CFS are often unable to handle simple math calculations. They might be able to complete the steps to solve a complex problem correctly, but can make simple addition, subtraction, or multiplication mistakes. Teachers should be aware of this problem when grading tests .
Myalgic Encephalomyelitis/chronic Fatigue Syndrome Diagnosis And Management In Young People: A Primer
- 1Division of General Pediatrics and Adolescent Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, United States
- 2Independent Researcher, Palm Coast, FL, United States
- 3Pharmacology and Physiology, New Jersey Medical School, Newark, NJ, United States
- 4Yale Child Study Center, Harvard Medical School, University of Connecticut School of Medicine, Newton Highlands, MA, United States
- 5Division of Pediatric Gastroenterology, Hepatology and Nutrition, New York Medical College, Valhalla, NY, United States
- 6Drexel University College of Medicine, Philadelphia, PA, United States
- 7Paediatrician, Durham, United Kingdom
- 8Division of Pediatric Cardiology, New York Medical College, Valhalla, NY, United States
- 9Primary Care/Chronic Fatigue Syndrome Clinic, Howick Health and Medical, Auckland, New Zealand
- 10Department of General Medicine, Royal Childrens Hospital, Murdoch Childrens Research Institute, Melbourne, VIC, Australia
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Health Issues Connected To Hypersomnia
Another motivation to seek diagnosis, and possible treatment, for hypersomnia are the health ramifications that come with it.
Hypersomnia, again, tends to be a signal of a larger health problem that has gone untreated. As mentioned earlier, sleep apnea is often connected to hypersomnia. Left untreated, sleep apnea has been shown to increase your risk of heart failure by 140%.
Diabetes, depression, hypertension also known as high blood pressure and erectile dysfunction are also common health problems encountered by those suffering from sleep apnea. These are serious medical conditions that can shave years off a persons life and make their day-to-day lives more challenging.
Thats why its critical to look at hypersomnia as a check engine light that should be inspected by a medical professional immediately. It can help you determine whether you have primary or secondary hypersomnia.
If you have secondary hypersomnia, you can treat the underlying health issue, and reduce your odds of suffering a medical emergency. If you have primary hypersomnia, a diagnosis can greatly improve your everyday life, and allow you to get the help you need.