ME :: Myalgic Encephalomyelitis

CFS :: Chronic Fatigue Syndrome

From Jodi Bassett

Ultra-Comprehensive ME / CFIDS Symptoms & Signs List

Warning: Many treatable and some potentially progressive and life-threatening illnesses may also debut in this fashion. The patient should always be seen and investigated by a qualified physician to rule out these illnesses. Patients who persist in their illness for more than six months should be re-examined at least every six months and tested yearly, since some illnesses may declare themselves in an erratic and cyclical manner. (PC)

A proper symptom list is really important tool for anyone diagnosed with ME / CFIDS. It's ridiculous that only the same 20 or so symptoms are listed again and again when many more than that are very common, particularly in the more severely ill (a group seemingly forgotten by many writers on ME / CFIDS inexplicably.) Just to know that there are other people who wake up paralyzed and that it's not just you, (for example)can be a real relief in itself, even if there is no real treatment for the symptom.

Also, just because you find a symptom of yours listed here it doesn't mean that you don't still have to tell your doctor about it and get it checked out if it needs to be. 'Just' because it's a ME/CFIDS symptom it doesn't mean it's not serious! Cardiac problems in particular should always be investigated, as should lymph node pain (among many other things). Never assume that everything is 'just' ME/CFIDS either, ME/CFIDS doesn't make you immune from catching or developing other illnesses as well unfortunately. Make sure you get every new symptom checked out by your doctor.

The symptoms are listed in no particular order, common ones are listed right near the rarer ones and of course, nobody gets every symptom so please don't let it freak you out. It's about finding information on symptoms you already have, not scaring you about 'possible' new ones that may never happen! You can't worry about things that may never happen... well of course you can, but it will get you nowhere!

From the book by David S. Bell, M.D., The Disease of a Thousand Names

"A list of CFIDS symptoms is misleading. At first glance it appears that almost every symptom possible is part of the list. This is another reason many physicians have not accepted the reality of CFIDS - there are simply too many symptoms. But a patient relating these symptoms does not list them in a random manner. They fit a precise pattern that is nearly identical from one patient to the next. The pattern of symptoms is so reproducible in the usual case that patients are able to diagnose CFIDS in others in an instant."

ULTRA-COMPREHENSIVE

ME / CFIDS SYMPTOMS & SIGNS LIST

ME/CFIDS is a severe acquired systemic illness, it manifests symptoms predominately based on neurological, immunological and endocrinological dysfunction and occurs in both epidemic and sporadic forms. The severity of symptoms varies unpredictably from week to week, day to day, even hour to hour. Some symptoms can be extremely severe, and in rare instances ME/CFIDS can also be fatal. Characteristics/signs of ME/CFIDS include: Physical as well as cognitive exertions exacerbate all other symptoms. Activity rhythms in the physical, cognitive and emotional realms are unpredictable. Significantly lower peak oxygen consumption. Low cardiac reactivity to cognitive stress. There is clinical evidence of immune system activation in the absence of viral exposure and/or associated with inappropriate events such as physical exercise and stress. Severe and prolonged exacerbation of illness if activity limits are transgressed too deeply or too often.

CARDIAC & CARDIOVASCULAR SYMPTOMS

Sensations of chest pain, chest pressure or fluttering sensations in the mid-chest.

Light-headedness and/or syncope (fainting), lower than normal blood volume, low blood pressure - Hypotension

Reduced maximum heart rate and/or an elevated resting heart rate

Extreme pallor or edema (swelling of the hands and feet)

Neurally Mediated Hypotension (NMH) low blood pressure which occurs when there is an abnormal reflex interaction between the heart and the brain) which can also occur with Delayed Postural Hypotension (usually delays are around 10 minutes or more)

Postural Orthostatic Tachycardia Syndrome - POTS (a heart rate increase of 30 bpm or more from the supine to the standing position within ten minutes or less) which can also occur with Delayed Postural Orthostatic Tachycardia Syndrome (usually delays are around 10 minutes or more)

Palpitations (skipped heart beats), tachycardia (rapid heart beat - up to 150bpm), premature atrial and ventricular contractions (early or extra heartbeats), various arrhythmias (abnormal heart rhythms) or ectopic heart beats (a contraction of the heart that occurs out of its normal rhythmic pattern, it may feel like a thumping sensation in the chest) can all occur

COGNITIVE & EMOTIONAL SYMPTOMS

Slowed retrieval of long term memories and difficulty making and consolidating memories (particularly short term memories)

Prosopagnosia - not being able to recognize faces, even those of close friends and family, (facial agnosia) and also a difficulty associating faces with names

Multitasking problems and an inability to learn to perform new tasks. (as well as forgetting how to perform routine tasks)

Volitional problems; difficulty starting or stopping tasks and/or cognitive slowing (tasks can take much longer than usual)

Impairment of concentration

Difficulty with visual and aural comprehension; Difficulty following oral or written directions, trouble distinguishing figure from ground and delayed speech comprehension. Greater difficulty with auditory than visual memory is common

Paraphasia - incorrect word selection, such as using the wrong word from the right category or using a word that sounds similar to the correct word but has a different meaning.

Word blindness - inability to recognize words.

Word, letter and short term ordering problems, for example; transposition - reversal of letters or numbers, or words when speaking or writing (pseudodyslexia)

Note: Some papers refer to DYSLEXIA rather than pseudodyslexia (PC)

Difficulty/inability to understand speech (Wernicke's Aphasia). and/or an inability to express language ie.speak (Broca's Aphasia).

Difficulty pronouncing words intelligibly (Dysarthria)

Inability to locate the words for writing (Agraphia) and/or problems with reading (Alexia)

Loss of arithmetic skills, inability to do simple addition, count money etc (Dyscalculia)

Perceptual and sensory disturbances eg, spatial instability and disorientation and an inability to focus vision.

Altered time perception (losing time), feeling 'spaced out' or 'cloudy' or not quite real somehow.

Disorders of colour perception - recognizing colors but forgetting what they mean, at traffic lights for example

Hypersensitivity to noise and/or emotional overload.

An exaggerated response to even small amounts of additional input, incoming messages become scrambled or blurred resulting in distorted signals and odd sensations

Difficulty organizing, integrating, and evaluating information to form conclusions or make decisions

Personality changes - usually intensification of a previous tendency, mood swings (emotional lability) Crying easily, excessive irritability etc or intense emotions such as rage, terror, overwhelming grief, anxiety, depression and guilt or sometimes, there can be emotional flattening or situations may be erronously interpreted as novel (due to prefrontal cortex dysfunctions)

Anxiety and panic attacks (often not tied to environmental triggers)

DIGESTIVE DISTURBANCES

Esophageal spasms (felt as extreme pain in the centre of the chest that sometimes radiates to the chest or mid-back)

Difficulty swallowing (or an inability to swallow altogether) or esophageal reflux (heartburn)

Great thirst and/or increased appetite and/or food cravings or lack of appetite

Inability to tolerate much fat in the diet (gallbladder problems)

Changes in taste and smell, an increased sense of smell or bizarre smells. Strange taste in mouth (bitter, metallic)

Multiple new food allergies and intolerances

Bloating, abdominal pain, nausea, indigestion or vomiting

Intense gallbladder pain (in the upper right quadrant of the abdomen) or liver pain, tenderness or discomfort. Liver problems can lead to a poisoned feeling, and alcohol intolerance is extremely common

Diarrhea, constipation or an alternation between the two.

ENDOCRINE & NEUROENDOCRINE DISTURBANCES

Thyroid pain, inflammation and/or dysfunction (usually secondary hypothyroidism) and/or adrenal gland dysfunction (aspects of both overactive and underactive adrenal function) and/or pituitary dysfunctions

Loss of thermostatic stability - subnormal body temperature and marked diurnal fluctuation (temperature fluctuation throughout the day) and/or poor temperature regulation - suddenly feeling cold in warm weather and/or recurrent feelings of feverishness and/or hot flashes particularly involving the upper body.

Sweating episodes (profuse sweating, sometimes even when cold) - with the sweat often having quite a sour smell

Cold hands and feet, sometimes on only one side

Swelling of the extremities or eyelids

Loss of adaptability and worsening of symptoms with stress

A feeling of agitated exhaustion (feeling 'tired but wired') is common

A sudden unexpected feeling of being 'high' can occur (due to neurological malfunctions) leading to (usually short) bouts of physical hyperactivity

Impaired cognitive processing when engaged in challenging physical exertion and/or a reduced maximum heart rate and/or a drop in body temperature and/or dyspnea (shortness of breath) with exertion

Loss of the natural antidepressant effect of exercise

Severe muscle weakness - paresis (Note that problems arise from sustained muscle use, they may function normally to start with but pain and weakness develop after very short periods of use and often come on very suddenly) or paralysis

Post-exertional malaise, 'fatigue' or pain which is often delayed until 12 - 24 or even 48 hours after trivial exertion (compared to pre illness levels of activity), that can last for days, weeks or months afterward.

HEADACHES

Onset of a new type, severity or pattern of headaches is common;

These can be experienced as a feeling of extreme pressure felt at the base of the skull and/or severe pain or sensation of pressure behind the eyes (or ears). Sinus, pressure or tension headaches (dull continual headaches which are not actually caused by anxiety as the name may suggest) can occur, as can hypoglycemia headaches (generalized prickly ache over the top of the head, sleepiness)

HEARING, VESTIBULAR & SPEECH PROBLEMS

Hyperacuity - an intolerance to normal sound volume and range, but particularly sounds in the higher frequencies. Sudden loud noises can also cause a startle response (flushing and a rapid heart beat) and there can also be an extreme intolerance to vibration.

Tinnitus - ringing, buzzing, humming, clicking, popping and squeaking noises generated in the ear

Hearing loss - sound can be muffled or indistinct or sound strangely flat

Sharp transient ear pain, deep itching in the ears and/or swelling of the nasal passages

Dizziness or Vertigo - a sensation that your surroundings (or you) are spinning wildly (can cause vomiting)

Acute profound ataxia (balance problems) and/or a sensitivity to motion/movement (which can affect balance)

Nystagmus - a rapid involuntary oscillation of the eyeballs (eyes rolling back in your head)

The voice may become very weak, hoarse or fall to a whisper, and then there can be total loss of speech

Slowed rate of speech, sometimes with stammering, stuttering, muddled or slurred speech

Difficulty moving the tongue to speak and/or difficulty getting enough air to speak more than a few words at a time

HYPOGLYCEMIA

Hypoglycemia or hypoglycemia-like symptoms (low blood sugar)

IMMUNE SYSTEM PROBLEMS

Painful/swollen lymph nodes especially on the neck, underarms and/or groin, particularly on the left side, and recurrent flu-like symptoms (general malaise, fever and chills, sweats, cough, night sweats, low grade fever, sore throat, feeling hot often and low body temperature)

Throat pain, scratchiness and tenderness which often worsens with exercise, exertion, or before relapses. Throat may feel clogged and require constant clearing. Throat may appear red or have characteristic 'crimson crescents' around the tonsillar membranes of the upper throat

Increased susceptibility to secondary infections or a decreased susceptibility to secondary infections. (There is a tendency to catch either every virus going around or none of them)

A worsening of existing allergies and/or new severe sensitivities/allergies/intolerances to airborne allergens: pollen mould, animal dander, fur and feathers, dust. Food. Chemical sensitivities: indoor and outdoor chemical air contaminants, drugs and medications, clothing and personal care products

Allergy symptoms:

Skin: pallor, itching, burning, tingling, flushing, warmth or coldness, sweating behind the neck, hives, blisters, blotches, red spots, pimples, dermatitis, eczema

Eyes: blurred vision, itching, pain, watering, eyelid twitching, redness of inner angle of lower lid, drooping or swollen eyelids

Ears: earache, recurring ear infections, dizziness, tinnitus, imbalance

Nose: nasal discharge or congestion, sneezing

Mouth: dry mouth, increased salivation, stinging tongue, itching palate, toothache

Throat: tickling or clearing, difficulty swallowing

Lungs: shortness of breath, air hunger, wheezing, cough, mucous or recurrent bronchial infections

Heart: pounding or skipped heartbeats, chest tightness

Gastrointestinal tract: burping, heartburn, indigestion, nausea, vomiting, abdominal pain, gas, cramping, diarrhea, constipation, mucus in stool; frequent, urgent or painful urination, bedwetting (in children)

Muscular system: muscle fatigue, weakness, pain, stiffness, soreness

Central nervous system: headache, migraine, vertigo, drowsiness, sluggishness, giddiness

Cognition: lack of concentration, feeling of 'separateness', forgetting words or names, anxiety, tension, panic, overactivity, restlessness, jitteriness, depression, PMS

JOINT PROBLEMS

Significant myalgia (pain) in joints is often widespread. The most common joints affected are knees, ankles, elbows, hips but pain in the fingers also occurs as does aching in the joints

Gelling (stiffness) in the joints that develops after holding a position for awhile, usually sitting or upon awakening or be caused by changes in temperature or humidity

Stiff slow gait (often with legs quite wide apart) Difficulty with tandem gait

MUSCLE PROBLEMS

Significant myalgia in muscles is often widespread (sharp, shooting, burning or aching pain)

Transient tingling, numbness and/or burning sensations (or other odd sensations) in the face or extremities (paresthisias).

There is sometimes atrophy of specific muscle groups (a shrinking in size visible to the eye)

Inability to form facial expressions leading to a 'slack' facial appearance and/or a loss of ability to chew/swallow

Paresis - severe muscle weakness (Note that problems arise from sustained muscle use, they may function normally to start with but pain and weakness develop after very short periods of use and often come on very suddenly) or paralysis

Tremors and twitches of the muscles (involuntary movements), muscle spasms, which can be extremely severe and painful or there may be spasms of the hands and feet, which can lead to 'clawed' deformities

Loss of co-ordination/clumsiness - difficulty in judging distance, placement and relative velocity (caused by proprioception disturbances, proprioception being the perception of stimuli relating to your own position, posture, equilibrium, or internal condition) Extension or quick rotation of the neck can cause dizziness (also due to proprioception disturbances)

Slight hesitation in movement or 'cogwheel' effect with movements

Skin is very sensitive to the touch, there can be also be allodynia - a pain response to stimuli not usually painful and/or spontaneous bruising

ORAL PROBLEMS

Dental decay and periodontal disease (gum disease) are much more common than in the general population

Frequent canker sores (painful sores in the mouth which look like small bumps with white heads)

Loose teeth and endodontal (the soft tissue in the centre of the tooth) problems

Temperature sensitivity in the teeth and/or pain

REPRODUCTIVE SYMPTOMS

Menstrual cycles may become shorter, longer or irregular. Periods may also become lighter or disappear altogether (when illness is severe usually)

Intensification of ME / CFIDS symptoms before and during a period

Lowered libido

Impotence

RESPIRATORY SYMPTOMS

Erratic breathing pattern and/or episodic hyperventilation

Dyspnea - air hunger, (often on waking or exertion), which can be severe

Persistent coughing and wheezing can occur

SEIZURES & SEIZURE ACTIVITY

Grand mal seizures (where there is loss of consciousness and motor disturbances), Petit Mal seizures - absence seizures (where you are conscious but unaware of your actions, a person may continue with an activity as though asleep) or Simple partial seizures (do not involve loss of consciousness but produce altered sensations, perception, mood or bodily sensation) can occur

Sensory storms/overload phenomena (hypersensitivity to light, sound, vibration, speed, odours and/or mixed sensory modalities)

Myoclonus (strong involuntary jerks of the arms, legs or entire body)

SKIN, HAIR & NAILS

Skin: extreme pallor, rashes, dry and peeling skin, acne, spontaneous bruising, fungal infections, butterfly rash on face, flushing of face, fingerpads may be atrophic so that the fingerprints are hard to see, skin may become red and shiny (after a substantial period of illness usually).

Hair: loss and poor quality regrowth.

Nails: vertical ridges, bluish nail bed, brittleness, fungal infections

SLEEP PROBLEMS

Unrefreshing sleep (waking up feeling worse than when you went to bed)

Reversed or chaotic diurnal sleep rhythms (ie. your body clock resets itself inappropriately)

Insomnia - difficulty initiating or maintaining sleep or Hyposomnia -lack of sleep

Hypersomnia - excessive sleeping (common in the earlier stages of the illness only)

Very light sleep

Unusually vivid nightmares

Dysania (morning fog)

Temporary paralysis after sleeping (also called waking paralysis, can last from minutes to hours) and/or early waking states (where you are neither asleep nor awake which can last for minutes or many hours)

In severe illness patients can become unconscious, comatose for up to 23, 24 hours a day (the brain becomes unable to maintain wakefulness)

URINARY TRACT PROBLEMS

Urinary frequency and bladder dysfunction, uncomfortable or painful/burning urination (Dysuria), difficulty passing urine or incontinence and/or nocturia (excessive urinating at night)

VISION & EYE PROBLEMS

Photophobia (extreme sensitivity to light). Oscillating or diminished pupillary accommodation responses with retention of reaction to light

Pain or burning sensations in the eyes, floaters, spots and scratchiness in vision, sluggish focus, an inability to focus or accommodation difficulty (difficulty switching from one focus to another ) can all occur as can double, tunnel or blurred vision, night blindness and/or a transient loss of vision and/or loss of depth of field, less ability to make figure/ground distinctions

Nystagmus - a rapid involuntary oscillation of the eyeballs (eyes rolling back in your head)

Tearing and dry eye

WEATHER SENSITIVITY

Intolerance of extremes of hot and cold (exacerbation of symptoms during temperature (extremes). Insomnia, migraines, irritability or generally 'feeling off' a day or two before the weather changes.

Changes in temperature or humidity can cause stiffness or increased aching or pain in the muscles. Changes in barometric pressure can cause night sweats and spontaneous sweating during the day

WEIGHT CHANGES

Marked weight gain (often independent of dietary changes) or marked weight loss (often independent of dietary changes), rapid weight loss can also occur despite copious amounts of food being eaten

ME / CFIDS FATALITIES

Most deaths from ME / CFS, around two thirds, are due to organ failure (according to the National CFIDS Association). Death can also occur as a result of secondary infections in a similar way to AIDS, or be due to severe cardiac irregularities or problems with maintaining breathing.

CO-MORBID ENTITIES

(Note that some conditions, such as NMH for example, are instead included in the general symptoms list because they are so central to ME/CFIDS)

Increased tendency for Mitral Valve Prolapse, especially in children (breathlessness, fatigue, edema)

Viral myocarditis - inflammation of the heart (usually of little consequence but which can sometimes lead to substantial cardiac damage and severe acute heart failure. It can also evolve into the progressive syndrome of chronic heart failure. There have been sudden deaths associated with exceptional physical exertion in patients with viral illnesses)

Pericarditis (the outer layer of the heart, pericardium, is inflamed. Symptoms include chest pain, shortness of breath, and rapid, shallow respiration)

Secondary or reactive depression (as with any other chronic illness) or organic depression

Irritable Bowel Syndrome

Raynauds phenomenon (poor circulation)

Shingles

Systemic yeast/fungal infections are common (eg. Candida)

Multiple Chemical Sensitivity Syndrome MCSS

Carpal tunnel syndrome (weakness, pain, and disturbances of sensation in the hand)

Pyriform muscle syndrome causing sciatica

Positive Fibromyalgia tender points (FMS) and Myofascial trigger points (MPS) are common

Temporomandibular Joint Syndrome TMJ (spasms of the jaw muscles causing intense pain)

Hashimoto's thyroiditis

Sicca Syndrome

Endometriosis (the presence and growth of functioning endometrial tissue in places other than the uterus that often results in severe pain and infertility) may be more common in ME/CFIDS

Dysmenorrhea - menstrual pain experienced a week before, during and a few days after periods (other symptoms include; headache, suprapubic cramping, backache, pain radiating down to anterior thigh, nausea and vomiting, diarrhea, syncope)

More severe or new onset PMS

Migraines (nausea, vomiting, head pain, light and noise sensitivity which can last for hours or days)

Restless Legs Syndrome RLS

Sleep apnea

Irritable Bladder Syndrome

Cystitis (inflammation of the urinary bladder)

Prostatitis (inflammation of the prostate gland)

Sjogrens syndrome (autoimmune disorder affecting moisture producing glands in the body)

Complied by Jodi Bassett, 2004
Go to: http://www.ahummingbirdsguide.com for more ME / CFIDS info/writings or to get a copy of this list.

REFERENCES

All symptoms/signs are taken from the following ME/CFIDS books, I've just put them all in the one place (and in the form of an easy to read list).

Bell, David S MD 1995, The Doctor's Guide to Chronic Fatigue Syndrome, Perseus Books, Massachusetts

Berne, Katrina PH.D 2002, Chronic Fatigue Syndrome, Fibromyalgia and other Invisible Illnesses, Hunter House, California

Colby, Jane 1996, ME: The New Plague, Ipswitch Book Company Ltd, Ipswitch

Macintyre, Anne DR 1998, M.E. Chronic Fatigue Syndrome: A Practical Guide, Thorsons Publishers, London

McGregor, Neil MDSc, PhD & Meirleir, Kenny De MD, PhD (ed) 2003 Myalgic Encephalomyelitis /Chronic Fatigue Syndrome: Clinical Working Case Definition, Haworth Medical Press, New York

Verillo, Erica F & Gellman, Lauren M 1997, Chronic Fatigue Syndrome - A Treatment Guide, St. Martin's Griffin, New York









ME/CFS International Awareness Day



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