# Ultra-Comprehensive ME/CFIDS Symptoms & Signs List



## M&M (Jan 20, 2002)

This was posted to the Co-Cure Email list. It's quite lengthy, but quite informative, and very well written!*************************************************Ultra-Comprehensive ME/CFIDS Symptoms & Signs ListA proper symptom list is really important tool for anyone diagnosed withME/CFIDS. It's ridiculous that only the same 20 or so symptoms are listedagain and again when many more than that are very common, particularly inthe more severely ill (a group seemingly forgotten by many writers onME/CFIDS inexplicably.) Just to know that there are other people who wake upparalyzed and that it's not just you, (for example) can be a real relief initself, even if there is no real treatment for the symptom.Also, just because you find a symptom of yours listed here it doesn't meanthat you don't still have to tell your doctor about it and get it checkedout if it needs to be. 'Just' because it's a ME/CFIDS symptom it doesn'tmean it's not serious! Cardiac problems in particular should always beinvestigated, as should lymph node pain (among many other things). Neverassume that everything is 'just' ME/CFIDS either, ME/CFIDS doesn't make youimmune 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 rightnear the rarer ones and of course, nobody gets every symptom so please don'tlet it freak you out. It's about finding information on symptoms you alreadyhave, not scaring you about 'possible' new ones that may never happen! Youcan'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 thatalmost every symptom possible is part of the list. This is another reasonmany physicians have not accepted the reality of CFIDS - there are simplytoo many symptoms. But a patient relating these symptoms does not list themin a random manner. They fit a precise pattern that is nearly identical fromone patient to the next. The pattern of symptoms is so reproducible in theusual case that patients are able to diagnose CFIDS in others in aninstant."*ULTRA-COMPREHENSIVE ME/CFIDS SYMPTOMS & SIGNS LIST*ME/CFIDS is a severe acquired systemic illness, it manifests symptomspredominately based on neurological, immunological and endocrinologicaldysfunction and occurs in both epidemic and sporadic forms. The severity ofsymptoms varies unpredictably from week to week, day to day, even hour tohour. Some symptoms can be extremely severe, and in rare instances ME/CFIDScan also be fatal.Characteristics/signs of ME/CFIDS include: Physical as well as cognitiveexertions exacerbate all other symptoms. Activity rhythms in the physical,cognitive and emotional realms are unpredictable. Significantly lower peakoxygen consumption. Low cardiac reactivity to cognitive stress. There isclinical evidence of immune system activation in the absence of viralexposure and/or associated with inappropriate events such as physicalexercise and stress. Severe and prolonged exacerbation of illness ifactivity limits are transgressed too deeply or too often.*CARDIAC & CARDIOVASCULAR SYMPTOMS*Sensations of chest pain, chest pressure or fluttering sensations in themid-chest.Light-headedness and/or syncope (fainting), lower than normal blood volume,low blood pressure - HypotensionReduced maximum heart rate and/or an elevated resting heart rateExtreme pallor or edema (swelling of the hands and feet)Neurally Mediated Hypotension (NMH) low blood pressure which occurs whenthere is an abnormal reflex interaction between the heart and the brain)which can also occur with Delayed Postural Hypotension (usually delays arearound 10 minutes or more)Postural Orthostatic Tachycardia Syndrome - POTS (a heart rate increase of30 bpm or more from the supine to the standing position within ten minutesor less) which can also occur with Delayed Postural Orthostatic TachycardiaSyndrome (usually delays are around 10 minutes or more)Palpitations (skipped heart beats), tachycardia (rapid heart beat - up to150bpm), premature atrial and ventricular contractions (early or extraheartbeats), various arrhythmias (abnormal heart rhythms) or ectopic heartbeats (a contraction of the heart that occurs out of its normal rhythmicpattern, 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 andconsolidating memories (particularly short term memories)Prosopagnosia - not being able to recognize faces, even those of closefriends and family, (facial agnosia) and also a difficulty associating faceswith namesMultitasking problems and an inability to learn to perform new tasks. (aswell as forgetting how to perform routine tasks)Volitional problems; difficulty starting or stopping tasks and/or cognitiveslowing (tasks can take much longer than usual)Impairment of concentrationDifficulty with visual and aural comprehension; Difficulty following oral orwritten directions, trouble distinguishing figure from ground and delayedspeech comprehension. Greater difficulty with auditory than visual memory iscommonParaphasia - incorrect word selection, such as using the wrong word from theright category or using a word that sounds similar to the correct word buthas 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)Difficulty/inability to understand speech (Wernicke's Aphasia). and/or aninability to express language ie.speak (Broca's Aphasia). Difficultypronouncing words intelligibly (Dysarthria)Inability to locate the words for writing (Agraphia) and/or problems withreading (Alexia)Loss of arithmetic skills, inability to do simple addition, count money etc(Dyscalculia)Perceptual and sensory disturbances eg, spatial instability anddisorientation and an inability to focus vision.Altered time perception (losing time), feeling 'spaced out' or 'cloudy' ornot quite real somehow.Disorders of colour perception - recognizing colors but forgetting what theymean, at traffic lights for exampleHypersensitivity to noise and/or emotional overload.An exaggerated response to even small amounts of additional input, incomingmessages become scrambled or blurred resulting in distorted signals and oddsensationsDifficulty organizing, integrating, and evaluating information to formconclusions or make decisionsPersonality changes - usually intensification of a previous tendency, moodswings (emotional lability) Crying easily, excessive irritability etc orintense emotions such as rage, terror, overwhelming grief, anxiety,depression and guilt or sometimes, there can be emotional flattening orsituations may be erronously interpreted as novel (due to prefrontal cortexdysfunctions)Anxiety and panic attacks (often not tied to environmental triggers)*DIGESTIVE DISTURBANCES*Esophageal spasms (felt as extreme pain in the centre of the chest thatsometimes radiates to the chest or mid-back)Difficulty swallowing (or an inability to swallow altogether) or esophagealreflux (heartburn)Great thirst and/or increased appetite and/or food cravings or lack ofappetiteInability 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 intolerancesBloating, abdominal pain, nausea, indigestion or vomitingIntense gallbladder pain (in the upper right quadrant of the abdomen) orliver pain, tenderness or discomfort. Liver problems can lead to a poisonedfeeling, and alcohol intolerance is extremely commonDiarrhea, constipation or an alternation between the two.*ENDOCRINE & NEUROENDOCRINE DISTURBANCES*Thyroid pain, inflammation and/or dysfunction (usually secondaryhypothyroidism) and/or adrenal gland dysfunction (aspects of both overactiveand underactive adrenal function) and/or pituitary dysfunctionsLoss of thermostatic stability - subnormal body temperature and markeddiurnal fluctuation (temperature fluctuation throughout the day) and/or poortemperature regulation - suddenly feeling cold in warm weather and/orrecurrent feelings of feverishness and/or hot flashes particularly involvingthe upper body.Sweating episodes (profuse sweating, sometimes even when cold) - with thesweat often having quite a sour smellCold hands and feet, sometimes on only one sideSwelling of the extremities or eyelidsLoss of adaptability and worsening of symptoms with stress*EXERCISE & STAMINA*A feeling of agitated exhaustion (feeling 'tired but wired') is commonA sudden unexpected feeling of being 'high' can occur (due to neurologicalmalfunctions) leading to (usually short) bouts of physical hyperactivityImpaired cognitive processing when engaged in challenging physical exertionand/or a reduced maximum heart rate and/or a drop in body temperature and/ordyspnea (shortness of breath) with exertionLoss of the natural antidepressant effect of exerciseSevere muscle weakness - paresis (Note that problems arise from sustainedmuscle use, they may function normally to start with but pain and weaknessdevelop after very short periods of use and often come on very suddenly) orparalysisPost-exertional malaise, 'fatigue' or pain which is often delayed until 12 -24 or even 48 hours after trivial exertion (compared to pre illness levelsof 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 baseof the skull and/or severe pain or sensation of pressure behind the eyes (orears). Sinus, pressure or tension headaches (dull continual headaches whichare not actually caused by anxiety as the name may suggest) can occur, ascan hypoglycemia headaches (generalized prickly ache over the top of thehead, sleepiness)*HEARING, VESTIBULAR & SPEECH PROBLEMS*Hyperacuity - an intolerance to normal sound volume and range, butparticularly sounds in the higher frequencies. Sudden loud noises can alsocause a startle response (flushing and a rapid heart beat) and there canalso be an extreme intolerance to vibration.Tinnitus - ringing, buzzing, humming, clicking, popping and squeaking noisesgenerated in the earHearing loss - sound can be muffled or indistinct or sound strangely flatSharp transient ear pain, deep itching in the ears and/or swelling of thenasal passagesDizziness or Vertigo - a sensation that your surroundings (or you) arespinning wildly (can cause vomiting)Acute profound ataxia (balance problems) and/or a sensitivity tomotion/movement (which can affect balance)Nystagmus - a rapid involuntary oscillation of the eyeballs (eyes rollingback in your head)The voice may become very weak, hoarse or fall to a whisper, and then therecan be total loss of speechSlowed rate of speech, sometimes with stammering, stuttering, muddled orslurred speechDifficulty moving the tongue to speak and/or difficulty getting enough airto 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 (generalmalaise, 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 constantclearing. Throat may appear red or have characteristic 'crimson crescents'around the tonsillar membranes of the upper throatIncreased susceptibility to secondary infections or a decreasedsusceptibility to secondary infections. (There is a tendency to catch eitherevery virus going around or none of them)A worsening of existing allergies and/or new severesensitivities/allergies/intolerances to airborne allergens: pollen mould,animal dander, fur and feathers, dust. Food. Chemical sensitivities: indoorand outdoor chemical air contaminants, drugs and medications, clothing andpersonal care productsAllergy symptoms:Skin: pallor, itching, burning, tingling, flushing, warmth or coldness,sweating behind the neck, hives, blisters, blotches, red spots, pimples,dermatitis, eczemaEyes: blurred vision, itching, pain, watering, eyelid twitching, redness ofinner angle of lower lid, drooping or swollen eyelidsEars: earache, recurring ear infections, dizziness, tinnitus, imbalanceNose: nasal discharge or congestion, sneezingMouth: dry mouth, increased salivation, stinging tongue, itching palate,toothacheThroat: tickling or clearing, difficulty swallowingLungs: shortness of breath, air hunger, wheezing, cough, mucous or recurrentbronchial infectionsHeart: pounding or skipped heartbeats, chest tightnessGastrointestinal 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, sorenessCentral nervous system: headache, migraine, vertigo, drowsiness,sluggishness, giddinessCognition: lack of concentration, feeling of 'separateness', forgettingwords or names, anxiety, tension, panic, overactivity, restlessness,jitteriness, depression, PMS*JOINT PROBLEMS*Significant myalgia (pain) in joints is often widespread. The most commonjoints affected are knees, ankles, elbows, hips but pain in the fingers alsooccurs as does aching in the jointsGelling (stiffness) in the joints that develops after holding a position forawhile, usually sitting or upon awakening or be caused by changes intemperature or humidityStiff slow gait (often with legs quite wide apart) Difficulty with tandemgait*MUSCLE PROBLEMS*Significant myalgia in muscles is often widespread (sharp, shooting, burningor aching pain)Transient tingling, numbness and/or burning sensations (or other oddsensations) in the face or extremities (paresthisias).There is sometimes atrophy of specific muscle groups (a shrinking in sizevisible to the eye)Inability to form facial expressions leading to a 'slack' facial appearanceand/or a loss of ability to chew/swallowParesis - severe muscle weakness (Note that problems arise from sustainedmuscle use, they may function normally to start with but pain and weaknessdevelop after very short periods of use and often come on very suddenly) orparalysisTremors and twitches of the muscles (involuntary movements), muscle spasms,which can be extremely severe and painful or there may be spasms of thehands and feet, which can lead to 'clawed' deformitiesLoss of co-ordination/clumsiness - difficulty in judging distance, placementand relative velocity (caused by proprioception disturbances, proprioceptionbeing the perception of stimuli relating to your own position, posture,equilibrium, or internal condition) Extension or quick rotation of the neckcan cause dizziness (also due to proprioception disturbances)Slight hesitation in movement or 'cogwheel' effect with movementsSkin is very sensitive to the touch, there can be also be allodynia - a painresponse to stimuli not usually painful and/or spontaneous bruising*ORAL PROBLEMS*Dental decay and periodontal disease (gum disease) are much more common thanin the general populationFrequent canker sores (painful sores in the mouth which look like smallbumps with white heads)Loose teeth and endodontal (the soft tissue in the centre of the tooth)problemsTemperature sensitivity in the teeth and/or pain*REPRODUCTIVE SYMPTOMS*Menstrual cycles may become shorter, longer or irregular. Periods may alsobecome lighter or disappear altogether (when illness is severe usually)Intensification of ME/CFIDS symptoms before and during a periodLowered libidoImpotence*RESPIRATORY SYMPTOMS*Erratic breathing pattern and/or episodic hyperventilationDyspnea - air hunger, (often on waking or exertion), which can be severePersistent coughing and wheezing can occur*SEIZURES & SEIZURE ACTIVITY*Grand mal seizures (where there is loss of consciousness and motordisturbances), Petit Mal seizures - absence seizures (where you areconscious but unaware of your actions, a person may continue with anactivity as though asleep) or Simple partial seizures (do not involve lossof consciousness but produce altered sensations, perception, mood or bodilysensation) can occurSensory 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, spontaneousbruising, fungal infections, butterfly rash on face, flushing of face,fingerpads may be atrophic so that the fingerprints are hard to see, skinmay 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 itselfinappropriately)Insomnia - difficulty initiating or maintaining sleep or Hyposomnia - lackof sleepHypersomnia - excessive sleeping (common in the earlier stages of theillness only)Very light sleepUnusually vivid nightmaresDysania (morning fog)Temporary paralysis after sleeping (also called waking paralysis, can lastfrom minutes to hours) and/or early waking states (where you are neitherasleep nor awake which can last for minutes or many hours)In severe illness patients can become unconscious, comatose for up to 23, 24hours a day (the brain becomes unable to maintain wakefulness)*URINARY TRACT PROBLEMS*Urinary frequency and bladder dysfunction, uncomfortable or painful/burningurination (Dysuria), difficulty passing urine or incontinence and/ornocturia (excessive urinating at night)*VISION & EYE PROBLEMS*Photophobia (extreme sensitivity to light). Oscillating or diminishedpupillary accommodation responses with retention of reaction to lightPain or burning sensations in the eyes, floaters, spots and scratchiness invision, sluggish focus, an inability to focus or accommodation difficulty(difficulty switching from one focus to another ) can all occur as candouble, tunnel or blurred vision, night blindness and/or a transient loss ofvision and/or loss of depth of field, less ability to make figure/grounddistinctionsNystagmus - a rapid involuntary oscillation of the eyeballs (eyes rollingback in your head)Tearing and dry eye*WEATHER SENSITIVITY*Intolerance of extremes of hot and cold (exacerbation of symptoms duringtemperature extremes). Insomnia, migraines, irritability or generally'feeling off' a day or two before the weather changes. Changes intemperature or humidity can cause stiffness or increased aching or pain inthe muscles. Changes in barometric pressure can cause night sweats andspontaneous sweating during the day*WEIGHT CHANGES*Marked weight gain (often independent of dietary changes) or marked weightloss (often independent of dietary changes), rapid weight loss can alsooccur 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 aresult of secondary infections in a similar way to AIDS, or be due to severecardiac irregularities or problems with maintaining breathing.*CO-MORBID ENTITIES:* (Note that some conditions, such as NMH for example, areinstead included in the general symptoms list because they are so central toME/CFIDS)Increased tendency for Mitral Valve Prolapse, especially in children(breathlessness, fatigue, edema)Viral myocarditis - inflammation of the heart (usually of little consequencebut which can sometimes lead to substantial cardiac damage and severe acuteheart failure. It can also evolve into the progressive syndrome of chronicheart failure. There have been sudden deaths associated with exceptionalphysical 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, shallowrespiration)Secondary or reactive depression (as with any other chronic illness) ororganic depressionIrritable Bowel SyndromeRaynauds phenomenon (poor circulation)ShinglesSystemic yeast/fungal infections are common (eg. Candida)Multiple Chemical Sensitivity Syndrome MCSSCarpal tunnel syndrome (weakness, pain, and disturbances of sensation in thehand)Pyriform muscle syndrome causing sciaticaPositive Fibromyalgia tender points (FMS) and Myofascial trigger points(MPS) are commonTemporomandibular Joint Syndrome TMJ (spasms of the jaw muscles causingintense pain)Hashimoto's thyroiditisSicca SyndromeEndometriosis (the presence and growth of functioning endometrial tissue inplaces other than the uterus that often results in severe pain andinfertility) may be more common in ME/CFIDSDysmenorrhea - menstrual pain experienced a week before, during and a fewdays 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 PMSMigraines (nausea, vomiting, head pain, light and noise sensitivity whichcan last for hours or days)Restless Legs Syndrome RLSSleep apneaIrritable Bladder SyndromeCystitis (inflammation of the urinary bladder)Prostatitis (inflammation of the prostate gland)Sjogrens syndrome (autoimmune disorder affecting moisture producing glandsin the body) Complied by Jodi Bassett, 2004Go to: www.ahummingbirdsguide.com for more ME/CFIDS info/writings or to geta properly formatted copy of this list.*REFERENCES*All symptoms/signs are taken from the following ME/CFIDS books, I've justput 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, MassachusettsBerne, Katrina PH.D 2002, Chronic Fatigue Syndrome, Fibromyalgia and otherInvisible Illnesses, Hunter House, CaliforniaColby, Jane 1996, ME: The New Plague, Ipswitch Book Company Ltd, IpswitchMacintyre, Anne DR 1998, M.E. Chronic Fatigue Syndrome: A Practical Guide,Thorsons Publishers, LondonMcGregor, Neil MDSc, PhD & Meirleir, Kenny De MD, PhD (ed) 2003 MyalgicEncephalomyelitis/Chronic Fatigue Syndrome: Clinical Working CaseDefinition, Haworth Medical Press, New YorkVerillo, Erica F & Gellman, Lauren M 1997, Chronic Fatigue Syndrome - ATreatment Guide, St. Martin's Griffin, New York-- *


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## Guest (Dec 1, 2004)

I didn't have to read very far before I recognized myself in many if not most of these symptoms. It's time for me to be honest with myself and with my doctors, I guess? Those intermittent bouts of energy that once allowed me to drive myself between episodes of fatigue... are now almost completely non-existent and the aggravation caused by even moderate exercise (a brisk 15-minute walk) now is often more than I can handle. I think maybe I was in a state of denial perhaps? Not sure. Just know that since I've been on Depakote (which has been over a year now), my ability to keep up has decreased. I have to stay on the med, however. It keeps me more relaxed and on an even keel, although it also adversely affects my cognitive abilities which are already semi in the toilet.Once again, thank you for posting this information.Evie


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