Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management

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There is more detailed information on the pathophysiology and testing for OI in Appendix G. Orthostatic symptoms include any of the following: increased fatigue, lightheadedness, white-outs or black-outs of the visual field, visual dimming, mental fog, headaches, nasuea, pain, or shortness of breath. Many patients adopt postural counter-maneuvers—such as sitting with knees to chest, doing homework in a reclined position, crossing the legs when standing, fidgeting in line—but are not aware of why they have done so.

Some adolescents might not report lightheadedness, so asking about symptoms that emerge during prolonged upright posture can be revealing. Characteristic physical appearances include facial pallor and a reddish-purple discoloration of the dependent limbs acrocyanosis when sitting or standing for more than a few minutes. Symptoms of OI can occur without prominent changes in heart rate and blood pressure, but are often associated with objective circulatory disorders.

Postural tachycardia syndrome POTS is the most common, neurally mediated hypotension NMH is less common, and orthostatic hypotension OH is uncommon in pediatric patients. The detection of POTS, NMH, and OH require a prolonged period of orthostatic stress and they can be missed with brief duration 1—2 min orthostatic vital sign measurements. Patients with NMH are generally symptomatic soon after standing, but longer duration tilt table testing is required to elicit the hypotension.

Tilt table testing requires referral to a specialist center and is costly. Neurally mediated hypotension requires the production of orthostatic symptoms with a 25 mm Hg drop in systolic BP, usually without an increase in HR, and can be associated with junctional rhythm recognized by a loss of P waves on the EKG at the time of pre-syncope or syncope.

The terms vasovagal syncope, neurocardiogenic syncope and NMH are synonymous. Syncope need not be present to make the diagnosis of NMH, as many affected individuals with lightheadedness and other symptoms sit or lie down before fainting. Orthostatic hypotension is defined by a BP reduction of at least 20 mm Hg systolic or 10 mm Hg diastolic within the first 3 min of upright posture This problem is rarely seen in pediatric patients except at times of hypovolemia, such as febrile illness, acute dehydration, hemorrhage, adrenal insufficiency, or excessive histamine release.

The lack of treatment studies in young people with OI and the lack of specialists with experience in OI contribute to difficulties in managing this condition. They might still benefit from treatment. The first step in management is non-pharmacological and emphasizes four main points: a avoid conditions that increase pooling of blood, b improve venous return to the heart, c avoid depletion of salt and water and other causes of low blood volume, and d avoid increasing catecholamines beyond their baseline levels which can be elevated. This involves avoiding prolonged standing or sitting, such as by moving around during longer classroom lectures, standing and stretching periodically to break up study sessions, and shopping at off hours.

Patients should avoid saunas, hot-tubs and sunbathing, and take short, cool baths, and showers. Large meals and high carbohydrate intake can interfere with orthostatic tolerance by contributing to a shift of blood volume to the splanchnic circulation. Small, frequent meals are often better tolerated. Adolescents can utilize the muscle pump of the lower limbs by e.

Sitting on a high stool with the legs dangling freely should be avoided, as there is no resistance to blood pooling in the legs. Some adolescents find they can sit longer without symptoms if they put their feet on a low foot rest, or sit with one leg folded under the buttocks. Compression garments such as support hose with 20—30 mm Hg compression can be helpful waist-high garments are more effective than thigh-high, which are more effective than knee-high. Some adolescents derive benefit from wearing body shaper garments or abdominal binders.

A time-honored recommendation to improve blood volume is to elevate the head of the bed slightly by 10—15 o.

Symptoms Of Chronic Fatigue Syndrome

While this is not comfortable for everyone, it can help the body retain fluid at night , Patients need to drink 2—3 liters of fluid daily and take in adequate sodium. We recommend drinking fluids every 2 h during the day. There is no specific amount of sodium that works for each individual. Food should be salted according to taste and supplemental buffered salt tablets should be considered if needed. Oral rehydration fluids can also be beneficial.

Healthy higher sodium food options include dill pickles, olives, tomato juice, soups, salsa, salted nuts, and soy sauce. Epinephrine Epi and norepinephrine NE levels are increased in those with OI and worsen with upright posture. Physiological stressors, including pain and emotional distress, can elevate catecholamine levels even higher. Stress avoidance can help with symptom management. Examine whether medications are helping or making symptoms worse. For example, in those with asthma, beta-adrenergic agonists like albuterol and salbutamol mimic the effects of Epi, and can contribute to tremulousness and lightheadedness in patients with OI.

While beta-agonists are not completely contraindicated, we try to use inhaled glucocorticoids, sodium chromoglycate, or montelukast for asthma control. Medications that promote vasodilation, such as niacin, phenothiazine anti-emetics and narcotic analgesics are better avoided or minimized. Although low doses of tricyclic antidepressants used for headache, pain, and insomnia might be tolerated, higher doses can aggravate hypotension.

Caffeine intake including soft drinks or coffee can help symptoms by acting as a vasoconstrictor, but some patients experience adverse effects. Alcohol consumption usually aggravates OI symptoms. Treating symptoms, especially pain and sleep problems, can improve OI symptoms. The third step in management is pharmacological intervention, aiming for monotherapy, but often rational poly-therapy produces better symptom control.

All medications should be started at low doses and increased very slowly. Some medications are listed in Table Some physicians recommend a low-dose beta blocker or midodrine as the first-line agents. For example: beta blockers might be chosen for those with elevated supine HRs, fludrocortisone might be chosen if there is a low resting BP or an increased salt appetite. Midodrine is efficacious in treating syncope, but 4 hourly dosing makes it less convenient to take when in school.

Stimulants can be helpful in those with fatigue and prominent cognitive symptoms. Adolescent girls with dysmenorrhea, acne or peri-menstrual exacerbation of OI symptoms can benefit from hormonal contraceptive therapy Sometimes the young patient fares better when treated with continuous combined hormonal regimens that bring one menstrual period every 90 days.

A long-acting injectable progesterone can be considered. The mechanism by which hormones improve OI is not entirely clear. Improvements in symptoms and in responses to upright tilt have been reported after treatment with selective serotonin reuptake inhibitors SSRIs in non-depressed patients with NMH refractory to other therapies In those with fibromyalgia, duloxetine a SNRI can be effective for pain, independent of its effect on mood.

When symptoms such as anxiety, pain, dysthymia, or premenstrual syndrome are present, these medications might also be chosen. The use of several medications with different pharmacologic effects, e. Among those refractory to treatment, it is important to question whether the OI is exacerbated by another co-morbid condition.

Selected individuals with OI in whom medications have failed to help have occasionally been managed with weekly infusions of IV saline until symptoms stabilize. Because individuals with OI are usually hypovolemic, they can withstand a rapid infusion of 2 L of normal saline over 1—2 h. Infusions provide a more rapid restoration of intravascular volume and a larger intake of sodium than is possible orally.

Peripheral IV lines are preferred, as the placement of PICC or central lines poses a risk of local infection or bacteremia The efficacy of this practice has not been studied in a randomized trial and more formal study is needed. Some with EDS develop early onset of varicose veins. In the classical form of EDS there can be hemosiderin deposition around the knees and shins. Fatigue and pain are substantial contributors to impaired quality of life in EDS , Clinicians can have an increased index of suspicion for joint hypermobility if their patients have been swimmers, dancers, and gymnasts.

Joint hypermobility can be overlooked unless the clinician performs specific measurements such as the Beighton score, a nine point measure in which scores of 4 or higher indicate joint hypermobility. Some with joint hypermobility can have associated postural dysfunctions such as thoracic kyphosis, scoliosis, a head-forward posture, lumbar lordosis, and pes planus. The evaluation and management of these patients often is helped by consultation with a physical therapist. In older adolescents, sexual activity can cause post-exertional symptom exacerbation. Adolescents with endometriosis are more likely than their adult counterparts to report pelvic pain that is also or only non-cyclical.

Associated symptoms can include constipation, pain with defecation, and urinary symptoms such as dysuria, urgency, frequency, and hematuria. Dyspareunia can also be present. A less well recognized problem that can cause chronic pelvic pain, associated with low BP and chronic fatigue, is PCS — It is associated with varicose ovarian and internal iliac veins. Symptoms include chronic, non-cyclical, pelvic pain and perineal heaviness, occasionally associated with lower back pain. Pain is usually present throughout the month, but often worsens with the menses. Unlike endometriosis, this form of pelvic pain worsens at the end of the day or with prolonged standing due to progressive distention of varicosities in the pelvis.

Also in contrast to endometriosis, PCS symptoms get better with prolonged supine posture or after a night in bed. Vulvar and thigh varices are less common in adolescents with PCS than in adults. The OCP can be given in monthly cycles, but for peri-menstrual symptoms, patients often do better when the pill is taken continuously for 3 months, e.

Intramuscular Depoprovera medroxyprogesterone acetate can also be effective.

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For menorrhagia, the patient should be tested for the presence of iron deficiency anemia and this should be treated if present. The menorrhagia might respond to an OCP or to cyclokapron tranexamic acid , 1 g tid during the period. For persisting pelvic pain, consultation with a gynecologist is often helpful. Gastrointestinal conditions which can be present include: gastroesophageal reflux, gastrointestinal motility disorders, celiac disease and non-celiac gluten sensitivity, lactose intolerance, food allergies e.

These conditions should be considered in the differential diagnosis of gastrointestinal complaints and if present should be treated appropriately. Milk protein is the most common offending food, but soy, wheat, and egg proteins can also cause symptoms. Many young patients are unaware that milk or other specific proteins are a problem, because immediate reactions are absent, and symptoms can be delayed for several hours after ingestion.

Symptoms that indicate the possibility of a non-IgE-mediated allergy or an intolerance of a food protein are: a epigastric or abdominal pain, b gastroesophageal reflux symptoms heartburn, retro-sternal discomfort, acid taste in the mouth, sometimes a mucousy form of vomiting , and c appetite disturbance early satiety, picky appetite , Other associated symptoms can include recurrent aphthous ulcers, intermittent fevers, headaches including migraines , worsening lightheadedness, myalgias, sinusitis, and either constipation or diarrhea.

Skin testing in people with delayed gastrointestinal hypersensitivities is usually negative. Unless delayed food protein hypersensitivities are adequately addressed, they can obscure any improvements that might accompany otherwise effective treatments. A history of suspected food intolerances should be taken. If the specific symptoms mentioned above are present and intolerance to a specific food is suspected, a trial of strict dietary elimination of the offending food for 2—4 weeks can be undertaken.

Provided that the initial food that has been restricted, based on the history is the culprit, and the elimination diet is strict enough, intestinal symptoms usually begin to resolve after 10—14 days sometimes sooner. If allergic individuals have already been restricting the offending food and then are inadvertently re-exposed, their symptoms will return. This occurrence provides support for the diagnosis. For persisting abdominal symptoms, consultation with a gastroenterologist can be helpful.

In contrast to non-IgE mediated allergies see Gastrointestinal Issues , IgE-mediated allergies are recognized by the presence of immediate allergic symptoms, including wheezing, pruritus, urticaria, lip and tongue swelling, and more severe features of anaphylaxis. A mast cell activation syndrome MCAS might be present.

The importance of MCAS has likely been underappreciated in the past. Symptoms can include fatigue, lightheadedness, facial flushing, rashes, itching, hives, bone and muscle pain, nausea, vomiting, abdominal pain, diarrhea, brain fog, migraines, and intolerance to multiple medications , Recent work has identified hereditary elevations in tryptase an enzyme released after mast cell activation among those with POTS, joint hypermobility, and atopic disorders Treatment of MCAS involves antihistamines and medications to stabilize the mast cell membrane such as cromolyn, quercetin and the leukotriene receptor antagonists zafirlukast and montelukast.

Several detailed reviews of the clinical features, diagnostic tests and treatments of MCAS are available — , A neurological examination might reveal nystagmus, diplopia, absence of the gag reflex, hyper-reflexia and decreased sensation in the pelvis and lower limb. In those with prominent symptoms including headache, evaluation needs to exclude intracranial hypertension and intracranial hypotension. Referral to a neurologist can be helpful. Correction of dental problems can improve overall health. Commonly reported problems are xerostomia dry mouth , dental caries, periodontal disease, bruxism, temporomandibular joint disorder TMD and impacted third molar teeth.

Dental visits can be stressful, result in lingering discomfort and debilitating fatigue and recovery can be prolonged. During dental procedures, discomfort can be minimized by the use of a mouth prop to maintain an open posture of the mouth. The smallest size mouth prop that is effective should be used. Dentists also need to be familiar with the clinical features of OI and be prepared to treat patients at risk of developing syncope. Treatment planning of elective dentistry in more extensive cases should allow time between appointments to recover from fatigue.

Dry mouth can exist on its own, result from the effects of medications or from co-morbid medical conditions. It can lead to rampant dental caries, exacerbation of periodontal disease, or oral candidiasis. Standard treatment includes increasing oral moistness with regular fluid intake, fluoride supplementation for home use, and professional dental prophylaxis. Treatment for dental caries and periodontal disease follows standard dental practice. In these patients, a local anesthetic can be used without Epi. If a local anesthetic with added Epi is required, it should be administered with caution.

Bruxism often results in loss of tooth structure and can exacerbate TMD. For bruxism, an occlusal guard can be prescribed to protect the dentition and help to alleviate TMD symptoms. Asymptomatic impacted teeth that appear as if they will not erupt or if there is room for proper eruption, are monitored. The impact on the patient of tooth removal is related to the difficulty of the extraction. In those patients who would be most affected by long, difficult procedures and the possible need for IV or general anesthesia with a significant post-operative recovery time, we would recommend a more conservative approach.

Each case must be evaluated individually. Severe post-exertional symptoms can result if a visit to a hospital emergency room should become necessary. Published data on the characteristics of this group are lacking. The course of the severe form of the illness is unpredictable. Many severely affected young patients do show varying degrees of improvement with time and some manage to return to full activities. A few remain severely affected. Severely ill young patients are often difficult to manage and frequently have received little help from medical practitioners.

They can be socially isolated and frequently have to confront disbelief in the reality of their illness from family members, school personnel, social workers and physicians. They are in need of a great deal of practical help, emotional support and comfort. In addition to medical supervision they might require support from home health services and aides perhaps overseen by a nurse manager.

They are under great stress and can sometimes benefit from counseling. The patient can be reassured that improvement is common, even if it takes months or years, and that recovery is possible, but cannot be guaranteed. At the far end of the illness spectrum are the very severely affected patients.

These patients are fortunately, relatively rare. These young patients are in an exceedingly unpleasant situation. Our advice is based on clinical experience, as there is little literature on this subject. If the patient is cared for at home, home visits are necessary. Further advice can also be given by telephone consultations or by e-mail. If the patient is very severely affected from the outset, confirmation of the diagnosis is first necessary.

Where there is a marked deterioration in a moderately severely affected patient, the practitioner might need to exclude other illnesses. Likewise, the patient and the family might need to adjust their expectations to very modest levels. Although there are therapeutic options see below , results of therapy are variable. Therefore, targets or predictions for recovery should be avoided. The two best environments in which to care for the very severely affected patient are a the home and b an institution where long-term supportive care and symptom relief are the priorities and where staffs are familiar with the illness.

Because of noise and bustle, a general hospital might be unsuitable. However, if general hospital care becomes necessary, attempts should be made to find a facility where the patient can be nursed in a very quiet location. The best people to take care of the young patient are usually the parents. If the patient has to be admitted to an institution, attempts should be made to have one or two individual nurses be assigned to the patient. More detailed information on further management strategies is available Medications should be limited to those absolutely necessary and initially prescribed in very low doses and they should be increased slowly, as tolerated.

It can be given IV or IM. The IM injection can be painful. Inflexible, pre-ordained GET is often harmful and leads to exacerbation of symptoms in severe cases. However, movement is important to help reduce stiffness, maintain range of motion and prevent contractures.

In very severely affected patients who are confined to bed, movement is limited to tolerated activities of daily living. For those who can tolerate touch, a knowledgeable physical therapist can provide gentle, passive range-of-motion activity and gentle, passive stretching for brief periods of time 1 min at a time followed by a rest. When possible, the gradual resumption of some activities of daily living can be encouraged, but the patient should not be pressured into this. Orthostatic symptoms might need to be treated before the patient is able to sit up for very long.

Further progress is shown when the patient can tolerate sitting out of bed in a chair. When there is progress to the point that standing up is possible, minimal leisurely walking, for a few minutes daily can be tried. Any activity program should allow severely ill patients to pace themselves and stay within their energy envelope, however small that might be. In our experience, the majority of families draw on their strengths. The parents are usually able provide the necessary care, and siblings learn to cope with diminished parental attention.

Difficulties can arise when family members are ill-informed about the illness, when they do not believe that the young patient has a physical illness, when one parent needs to cease working in order to take care of the sick young person, when there is only one parent and the young person is too ill to go to school and has to be left at home alone, or when the school system is unable or unwilling to provide suitable education for the patient.

As with other chronic illnesses, pre-existing marital difficulties can be compounded by the strain of dealing with a sick child. Members of the wider extended family who show disbelief in the illness can also cause problems, even from a distance. Communication within the family, social support and extra activities were found to have a positive impact Immunization against human papilloma virus and hepatitis B are important for long-term health. Yearly immunization against influenza will prevent the serious relapse that can follow this illness. If possible, it should be administered when the patient is relatively well and it should be followed by 2—3 days of rest.

Post immunization relapse has been reported, but is uncommon. Immunization of other family members can also help to protect the patient. Further recommendations are given in Appendix F. Absence from school is usually due to poor physical and cognitive function. An educational fact sheet giving information about the disease and its impact on education is included in Appendix D. It is helpful for school personnel to be aware of the following. The illness is very unpredictable. Symptoms vary widely between patients and wax and wane.

Large fluctuations in illness severity can occur making planning and school attendance a challenge. Some students are able to attend school daily, others can only manage a part-time schedule, while others are homebound or bedbound. Early in the illness, students might be too ill to attend school and this situation can sometimes persist for months or years. Sometimes a student who is able to go school might appear fine one day and the next day they may be unable to go to school, and that inability to attend might continue for several weeks. While this might raise suspicions of truancy, or school refusal in some school personnel, the student usually wants to attend school, but is too ill to do so.

Students can become demoralized if they are asked to withdraw from school. Education helps students to fulfill their aspirations and allows important aspects of their lives such as socializing with their peer group, to develop It widens the range of possible occupations in later life. Work that is low skilled is usually more physically demanding.

During regular appointments with the young patient, the physician should ask how school is going. 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. If both parents need to work, that can be problematic for the young patient at home alone. Students who have understanding teachers, a flexible program, and assistance from sympathetic advocates often need less help from medical and psychological professionals.

Other schools might appear to agree with the recommendations yet never follow through with implementation. 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 85 — 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. 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 Educators need to be aware that it is difficult for these students to stand or even sit for prolonged periods of time. These students might need to move around during lessons. They might also need access to drinks and salty snacks especially during testing.

They might also be physically unable to complete long exams in one sitting. Returning to school after a long absence can be a challenge. If the student needs to travel long distances to school, this is very tiring. The situation needs to be handled with understanding and patience. The legal and procedural requirements for students to receive services for their disabilities vary significantly from place to place and are beyond the scope of this Primer.

If tested on a relatively good day, they might not have scores that differ from healthy individuals. Third, this kind of testing is often not covered by insurance, and can be costly. At a practical level, the testing usually does not alter the suggested management, which most often is to decrease the volume of academic work.

Regular communication with the school is helpful. Some students might be able to participate in a short physical activity, but not an activity that requires stamina. When this occurs, the student must stop and rest. The student might want to continue, but failure to stop and rest at the onset of increased fatigue often causes a serious and prolonged relapse of symptoms.

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When possible, these opportunities should be facilitated , Access to extra-curricular activities is also important for social reasons. Students who are unable to attend school often feel isolated at home, and miss their friends. The text of this monograph was developed by consensus of all the authors, and all authors agree to the content of the manuscript. Drafts of the main chapters were revised extensively by the entire group until consensus was achieved. The authors declare that this monograph was written in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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    Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management
    Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management
    Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management
    Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management
    Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management
    Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management Chronic Fatigue Syndrome M.E.: Symptoms, Diagnosis, Management

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