The Oh-So-Long Symptom List

Standard

Neurological Signs and Symptoms:

  • Inconsistent central nervous system function
  • Vertigo and disequilibrium, for example a sensation that your surroundings (or you) are spinning wildly and vertigo may also be expressed in a milder form as an inability to watch TV or to read (or knit!)
  • Temperature dysregulation
  • Poor tolerance for hot or cold environments
  • Hyperacusis (sensitivity to noise)
  • Photophobia (pain/relapse on exposure to light)
  • Pain and pressure at the back of the head (where the head meets the neck) and behind the eyes
  • Visual disturbances such as blurred vision, blacked-out vision and wavy visual field
  • Sensory storms‘ (while conscious)
  • Fragmented sleep
  • Difficulty initiating sleep
  • Lack of deep-stage sleep
  • Disrupted, chaotic or reversed circadian rhythms
  • Extreme intolerance to vibration or movement
  • Sudden loud noises can also cause a startle response (flushing and a rapid heartbeat)
  • Tinnitus
  • Simple partial seizures which do not involve loss of consciousness but produce altered sensations, perception, mood or bodily sensations; somatosensory seizures, autonomic seizures, focal motor seizures, auditory seizures, visual seizures
  • Complex partial seizures: episodic dysphasia/dysphagia (incomprehension of speech and inability to speak), olfactory hallucinations (smelling curry, for example, wherever I am)
  • Overload phenomena
  • Unrefreshing sleep (waking up feeling worse than when you went to bed)
  • Hypersomnia
  • Dysania (doesn’t that sound like a yoghurt or some branded water?)
  • Sluggish focus (visually), an inability to focus or accommodation difficulty (difficulty switching from one focus to another)
  • Vision reversals
  • Vision clouding
  • Intolerance of extremes of hot and cold weather
  • Changes in barometric pressure can cause night sweats and spontaneous sweating during the day
  • 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

Vascular and Cardiovascular Signs and Symptoms:

  • Chest pressure, heart pain and a fluttering/straining heart
  • Postural Orthostatic Tachycardia Syndrome
  • Feet burning painfully and turning blue/purple on standing (Raynaud’s phenomenon)
  • Pain/discomfort/poor digestion following meals
  • An exacerbation of symptoms on orthostatic challenge (maintaining an upright posture) beyond certain limits. (Lying down markedly improves symptoms for M.E. patients).
  • Orthostatic light-headedness or  blackouts
  • Oedema (swelling of the hands and feet)
  • Extreme pallor (usually just before or during a relapse)
  • It has never been investigated whether I suffer with more specific problems to do with low blood pressure, high heart rate, sleep bradycardia, arrhythmias or reduced circulating blood volume

Cognitive Signs and Symptoms:

 

  • Word-finding difficulty, incorrect word selection (paraphasia) is common, 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
  • Commonly used words become hard to retrieve
  • ‘Scanning’ or disjointed speech
  • Speech reversals
  • Difficulty comprehending speech or delayed speech comprehension
  • Handwriting changes (this waxes and wanes with the severity of illness)
  • Difficulty writing or comprehending text
  • Difficulty with even basic mathematics (dyscalculia) (although somewhat difficult to prove in someone who has trouble counting higher than thirty!), an inability or difficulty to do simple additions and other calculations, to count money, add up columns etc
  • Difficulty with multi-tasking and simultaneous processing
  • Impairment of concentration, maintaining a reasonable level of concentration on a task for even a short period of time may become extremely difficult and sometimes impossible, there is a need for mental micro-rests
  • Difficulty with spatial perception, for example a loss of co-ordination or clumsiness, difficulty in judging distance, placement and relative velocity (caused by proprioception dysfunctions, 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 dysfunctions)
  • Difficulty with sequencing, an inability to look up words in a dictionary, organise files or look up phone numbers
  • Difficulty  with memory including: making and consolidating new memories, recalling formed memories, and with immediate and delayed visual and verbal recall (e.g. facial agnosia); short term memory problems may lead to forgetting what they are doing to such a severity that I am unable to finish a sentence
  • Inability to learn new tasks and forgetting how to perform routine tasks
  • May need extra sensory cues to complete tasks, for example having the light on when before the task could be done by touch alone, or can understand a conversation face-to-face but not over the phone
  • Cognitive slowing
  • Difficulty with visual and aural comprehension
  • Difficulty following oral or written directions
  • Trouble distinguishing figure from ground and speech comprehension difficulties.
  • Word, letter and short term ordering problems, for example; transposition – reversal of letters or numbers, words or sentences when speaking or writing (pseudodyslexia)
  • Agraphia, inability to locate the words for writing
  • Problems with reading (alexia) or word blindness; I can still read but what is read is not comprehended and cannot be compared with known information already stored
  • Despite actively listening, the information simply does not register at all or must be repeated several times before it registers
  • In speaking, my syntax is askew often
  • Speech comprehension is delayed which can result in long pauses, interruptions, mistiming of responses and apparent non sequiturs
  • Difficulty or confusion with following timetables or keeping scheduled appointments
  • Loss of the ability to block out extraneous and unwanted information and noise
  • Loss of the ability to distinguish noise from required information and tend to shut down all intake after minimal prolongation of the information signal
  • An exaggerated response to even small amounts of additional input or stimulus (light, noise, movement, vibration) is common, causing incoming messages to become scrambled or blurred resulting in distorted signals and odd sensations (ie. low level seizure activity)
  • Even very low levels of light or noise etc. can also cause an exacerbation of other symptoms, or of the severity of the illness generally
  • Altered time perception (losing time), feeling ‘spaced out’ or ‘cloudy’ or not quite real somehow
  • Abstract reasoning dysfunction; difficulty organising, integrating, and evaluating information to form conclusions or make decisions
  • The brain becomes unable to maintain wakefulness; there can be a difficulty in maintaining full consciousness for more than a few seconds, minutes, or half-hour periods at a time
  • Volitional problems: difficulty starting or stopping tasks, or switching from one task to another (a neurological dysfunction where the body does not respond appropriately, or quickly, or without difficulty, to the minds commands)
  • Agitated exhaustion (neurological in origin)
  • Emotional symptoms include: mood swings (emotional lability) – crying easily etc. or intense emotions such as rage, terror, overwhelming grief, anxiety, depression and guilt, there can be an emotional flattening or situations may be erroneously interpreted as novel (due to prefrontal cortex dysfunction)
  • Emotional symptoms in M.E. tend to be linked to exacerbations in physical symptoms, there are often not environmental triggers
  • A worsening of symptoms (including cognitive function) with cognitive exertion beyond a certain level

 

There is often a marked loss (20 points on average) in verbal and performance IQ (fortunately I never have had to sit an IQ test)

Greater difficulty with auditory comprehension than visual is common (ie, with these ears of mine, I’m stuffed)

Digestive Signs and Symptoms:

  • Oesophageal spasms (felt as extreme pain in the centre of the chest that sometimes radiates to the chest or mid-back) or oesophageal reflux (heartburn)
  • Difficulty swallowing (or an inability to swallow)
  • Great thirst or increased appetite
  • 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 (for example, the week I could smell curry everywhere, it was very odd)
  • Strange taste in mouth (bitter, metallic)
  • Multiple new food allergies and intolerances (I can’t eat garlic anymore.  And cucumber and watermelon are problematic).
  • Bloating, tenderness, discomfort
  • Abdominal pain
  • Nausea
  • Indigestion
  • Constipation
  • Alcohol intolerance is common (this also waxes and wanes but can be frustratingly unpredictable)
  • Feeling ‘poisoned’ and very ill

Endocrine and Neuroendocrine Signs and Symptoms:

  • Loss of thermostatic stability – suddenly feeling cold in warm weather, recurrent feelings of feverishness or chills or hot flashes particularly involving the upper body
  • Low-grade fever may occur following exertion
  • Temperature fluctuation throughout the day (unproven abnormal temperature but the sensation is there)
  • Cold hands and feet, sometimes on only one side
  • Sweating episodes (profuse sweating, sometimes even when cold)
  • Swelling of the extremities
  • Loss of adaptability and worsening of symptoms with stress due to endocrine dysfunctions
  • Hypoglycaemia or hypoglycaemia-like symptoms (problems with blood sugar regulation/low blood sugar)

Muscular, Pain, Exertion and Physical Activity Signs and Symptoms

  • An exacerbation of symptoms with physical activity beyond a person’s individual limits, and a worsening of the illness generally (etc.) with continued overexertion
  • Severe muscle weakness (paresis) or paralysis
  • Muscles will often function normally to start with, but pain and weakness (or paralysis) develop after short periods of use and then take 3, 4 or 5 days (or longer) to resolve (normal muscle recovery is around 200 minutes
  • Problems arise from sustained muscle use – it is a pathologically slow or impaired recovery of muscle after exercise (metabolism of the muscles), therefore I may be easily able (for short periods) to lift something moderately heavy one or two times, but be unable to lift something very light many times
  • Muscle weakness/paralysis affects all muscles/organs, including the heart, eyes and brain
  • Dyspnoea with overexertion
  • Erratic breathing pattern
  • Loss of the natural antidepressant effect of exercise
  • Inappropriate signs of immune system activation can be brought on by overexertion (i.e. flu-like symptoms)
  • Persistent coughing and wheezing
  • Worsening of symptoms generally caused by a hypersensitivity to light, sound, vibration, movement, temperature, odours and/or mixed sensory modalities
  • Muscle weakness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.)
  • Muscle pain, twitching and uncontrollable spasms
  • Difficulty breathing and air-hunger
  • Difficulty swallowing or chewing
  • Paraesthesia
  • Polyneuropathy
  • Myoclonus
  • Onset of a new type of headaches, severe or pattern of headaches is common, often associated with neck rigidity and occipital pain (pain/pressure felt at the base of the skull, the top of the neck) and/or retro-orbital eye pain (pain behind the eyes) and also sometimes pain behind the ears (or one ear).
  • Sinus, pressure or tension headaches (dull continual headaches which are not actually caused by anxiety as the name may suggest)
  • Hypoglycaemia headaches (generalised prickly ache over the top of the head) (I had wondered what the nice prickly headache thing was about)
  • Sharp transient ear pain
  • Deep itching in the ears (I just learnt that could be a symptom today!)
  • Significant (can be extremely severe in M.E) myalgia (pain) in joints is often widespread, especially knees, hips and fingers; sharp, shooting, burning or aching pain
  • Gelling (stiffness) in the joints that develops after holding a position for awhile
  • Aching in the joints
  • Gait abnormalities and a difficulty with tandem gait
  • Inability to form facial expressions leading to a ‘slack’ facial appearance, almost Parkinsonian
  • Spasms of the hands and feet which can lead to ‘clawed’ deformities
  • Spasms in the neck which cause the head to twist to one side
  • Some cogwheel and leadpipe rigidity
  • Slight hesitation in movement
  • Severe spike-like pain, usually in the main muscle mass in the leg; extensors or flexors,  commonly described as feeling as though a nail or a knife had been stuck into the area
  • Formication (another ‘new’ one learnt today whilst doing that, whilst many languages use ‘ants’ to describe pins and needles, I am often very aware of a different sensation to pins and needles, it does feel like being bitten or stung by ants, a burning, itching and crawling sensation)
  • Allodynia – for example, the weight of the bedcovers becomes ridiculously heavy and painful
  • Problems with nails such as vertical ridges, bluish nail bed, brittleness
  • Marked weight gain or loss (often independent of dietary changes) (particularly as a teenager)

 

Immunological Signs and Symptoms:

  • Lymphadenopathy
  • 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)
  • Very severe throat pain, scratchiness and tenderness which often worsens with exercise, exertion or before relapses
  • Increased or decreased susceptibility to secondary infections, a tendency to catch either every virus going around or to ‘never catch anything’ depending on whether the immune system is under- or over-active (which changes dependant on which stage of the illness the person is in)
  • Infections also last longer, can be more severe and occur more frequently and may also cause relapses either concurrently or just after the initial infection
  • Reactions to chemical smells
  • Chemical sensitivities may occur to indoor and outdoor chemical air contaminants; can produce allergic reactions although not all chemical sensitivities are IgE mediated, may also cause an exacerbation of other symptoms
  • Worsening of existing allergies and/or new severe sensitivities/allergies/intolerances to many varieties of food (and food additives) and to airborne allergens
  • Hair loss and poor quality regrowth
  • Skin rashes
  • Dry and peeling skin
  • Spontaneous bruising (aha!  I have long been plagued by a Murphy’s Law state of bruising, I rarely seem to come up in bruises when I bash myself but I find random bruises that have no apparent cause all the time)
  • Flushing of face (my face is very red most of the time actually, I can’t use blusher anymore)
  • Finger pads may be atrophic so that the fingerprints are hard to see, skin may become red and shiny (my hands often look like I’ve spent far too much time in a bathtub)

Oral Signs and Symptoms:

  • Dental decay and periodontal disease (gum disease) are much more common than in the general population
  • Frequent canker sores (I thought that this was something to do with horses, but hey!)
  • Temperature sensitivity in the teeth
  • Pain in the teeth
  • Tooth-hypersensitivity pain

CO-MORBID ENTITIES: 

  • Secondary or reactive depression (as with any other debilitating chronic illness) (actually primary depression, it commenced before ME but they don’t get on well)
  • Irritable Bowel Syndrome
  • Raynaud’s phenomenon (poor circulation) (symptoms of but never been investigated)
  • Carpal tunnel syndrome (weakness, pain, and disturbances of sensation in the hand) (possible as have symptoms of but never been investigated)

It sucks, doesn’t it?

(Information has been mostly drawn from the highly information Hummingbird website, many thanks to its authors).

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12 thoughts on “The Oh-So-Long Symptom List

  1. Pingback: Liability |

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