Quoted from Action for ME
Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.
Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that causes symptoms affecting many body systems, more commonly the nervous and immune systems.
Many people with M.E. experience persistent fatigue or pain.
Within the NHS, a diagnosis of chronic fatigue syndrome (CFS) or CFS/M.E. is often given.
M.E. is sometimes also diagnosed as Post-Viral Fatigue Syndrome (PVFS). This can make it confusing for many.
NHS Choices Website describes Fibromyalgia which now apparently comes under the same umberella as the other two:
NHS Choices Website describes Fibromyalgia which now apparently comes under the same umberella as the other two:
Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.
The other week I was sat in an appointment and I was asked what M.E. was - apart from the fact that I cannot actually say the proper name for it, I was at a loss for words, I know it doesn't happen often but I literally was struck dumb. How could I possibly describe what I go though. How just cutting pizza one day can leave my hand immobile the next day. The pain that rips through every part of your body that never actually goes away. The complete exhaustion when even moving is more energy than is available. When I feel like my skin is burning from the inside out..... Instead I found a list through a friend of mine Sarah, of the symptoms that are suffered when you have ME/CFS/Fibro I was shocked that I could tick virtually every symptom - unfortunately since 2011 my symptoms have deteriorated which is why I am now a regular at Gloucester Royal Hospital. This list is probably the best that I have seen.
The other week I was sat in an appointment and I was asked what M.E. was - apart from the fact that I cannot actually say the proper name for it, I was at a loss for words, I know it doesn't happen often but I literally was struck dumb. How could I possibly describe what I go though. How just cutting pizza one day can leave my hand immobile the next day. The pain that rips through every part of your body that never actually goes away. The complete exhaustion when even moving is more energy than is available. When I feel like my skin is burning from the inside out..... Instead I found a list through a friend of mine Sarah, of the symptoms that are suffered when you have ME/CFS/Fibro I was shocked that I could tick virtually every symptom - unfortunately since 2011 my symptoms have deteriorated which is why I am now a regular at Gloucester Royal Hospital. This list is probably the best that I have seen.
GENERAL____ Fatigue, made worse by physical exertion or stress
____ Activity level decreased to less than 50% of pre-illness activity level
____ Recurrent flu-like illness
____ Sore throat
____ Hoarseness
____ Tender or swollen lymph nodes (glands), especially in neck and underarms
____ Shortness of breath (air hunger) with little or no exertion
____ Frequent sighing
____ Tremor or trembling
____ Severe nasal allergies (new allergies or worsening of previous allergies)
____ Cough
____ Night sweats
____ Low-grade fevers
____ Feeling cold often
____ Feeling hot often
____ Cold extremities (hands and feet)
____ Low body temperature (below 97.6)
____ Low blood pressure (below 110/70)
____ Heart palpitations
____ Dryness of eyes and/or mouth
____ Increased thirst
____ Symptoms worsened by temperature changes
____ Symptoms worsened by air travel
____ Symptoms worsened by stress
____ Activity level decreased to less than 50% of pre-illness activity level
____ Recurrent flu-like illness
____ Sore throat
____ Hoarseness
____ Tender or swollen lymph nodes (glands), especially in neck and underarms
____ Shortness of breath (air hunger) with little or no exertion
____ Frequent sighing
____ Tremor or trembling
____ Severe nasal allergies (new allergies or worsening of previous allergies)
____ Cough
____ Night sweats
____ Low-grade fevers
____ Feeling cold often
____ Feeling hot often
____ Cold extremities (hands and feet)
____ Low body temperature (below 97.6)
____ Low blood pressure (below 110/70)
____ Heart palpitations
____ Dryness of eyes and/or mouth
____ Increased thirst
____ Symptoms worsened by temperature changes
____ Symptoms worsened by air travel
____ Symptoms worsened by stress
PAIN____ Headache
____ Tender points or trigger points
____ Muscle pain
____ Muscle twitching
____ Muscle weakness
____ Paralysis or severe weakness of an arm or leg
____ Joint pain
____ TMJ syndrome
____ Chest pain
____ Tender points or trigger points
____ Muscle pain
____ Muscle twitching
____ Muscle weakness
____ Paralysis or severe weakness of an arm or leg
____ Joint pain
____ TMJ syndrome
____ Chest pain
GENERAL NEUROLOGICAL____ Lightheadedness; feeling "spaced out"
____ Inability to think clearly ("brain fog")
____ Seizures
____ Seizure-like episodes
____ Syncope (fainting) or blackouts
____ Sensation that you might faint
____ Vertigo or dizziness
____ Numbness or tingling sensations
____ Tinnitus (ringing in one or both ears)
____ Photophobia (sensitivity to light)
____ Noise intolerance
____ Inability to think clearly ("brain fog")
____ Seizures
____ Seizure-like episodes
____ Syncope (fainting) or blackouts
____ Sensation that you might faint
____ Vertigo or dizziness
____ Numbness or tingling sensations
____ Tinnitus (ringing in one or both ears)
____ Photophobia (sensitivity to light)
____ Noise intolerance
EQUILIBRIUM/PERCEPTION____ Feeling spatially disoriented
____ Dysequilibrium (balance difficulty)
____ Staggering gait (clumsy walking; bumping into things)
____ Dropping things frequently
____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
____ "Not quite seeing" what you are looking at
____ Dysequilibrium (balance difficulty)
____ Staggering gait (clumsy walking; bumping into things)
____ Dropping things frequently
____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
____ "Not quite seeing" what you are looking at
SLEEP____ Hypersomnia (excessive sleeping)
____ Sleep disturbance: unrefreshing or non-restorative sleep
____ Sleep disturbance: difficulty falling asleep
____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
____ Sleep disturbance: vivid or disturbing dreams or nightmares
____ Altered sleep/wake schedule (alertness/energy best late at night)
____ Sleep disturbance: unrefreshing or non-restorative sleep
____ Sleep disturbance: difficulty falling asleep
____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
____ Sleep disturbance: vivid or disturbing dreams or nightmares
____ Altered sleep/wake schedule (alertness/energy best late at night)
MOOD/EMOTIONS____ Depressed mood
____ Suicidal thoughts
____ Suicide attempts
____ Feeling worthless
____ Frequent crying
____ Feeling helpless and/or hopeless
____ Inability to enjoy previously enjoyed activities
____ Increased appetite
____ Decreased appetite
____ Anxiety or fear when there is no obvious cause
____ Panic attacks
____ Irritability; overreaction
____ Rage attacks: anger outbursts with little or no cause
____ Abrupt, unpredictable mood swings
____ Phobias (irrational fears)
____ Personality changes
____ Suicidal thoughts
____ Suicide attempts
____ Feeling worthless
____ Frequent crying
____ Feeling helpless and/or hopeless
____ Inability to enjoy previously enjoyed activities
____ Increased appetite
____ Decreased appetite
____ Anxiety or fear when there is no obvious cause
____ Panic attacks
____ Irritability; overreaction
____ Rage attacks: anger outbursts with little or no cause
____ Abrupt, unpredictable mood swings
____ Phobias (irrational fears)
____ Personality changes
EYES AND VISION____ Eye pain
____ Changes in visual acuity (frequent changes in ability to see well)
____ Difficulty with accommodation (switching focus from one thing to another)
____ Blind spots in vision
____ Changes in visual acuity (frequent changes in ability to see well)
____ Difficulty with accommodation (switching focus from one thing to another)
____ Blind spots in vision
SENSITIVITIES____ Sensitivities to medications (unable to tolerate "normal" dosage)
____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
____ Sensitivities to foods
____ Alcohol intolerance
____ Alteration of taste, smell, and/or hearing
____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
____ Sensitivities to foods
____ Alcohol intolerance
____ Alteration of taste, smell, and/or hearing
UROGENITAL____ Frequent urination
____ Painful urination or bladder pain
____ Prostate pain
____ Impotence
____ Endometriosis
____ Worsening of premenstrual syndrome (PMS)
____ Decreased libido (sex drive)
____ Painful urination or bladder pain
____ Prostate pain
____ Impotence
____ Endometriosis
____ Worsening of premenstrual syndrome (PMS)
____ Decreased libido (sex drive)
GASTROINTESTINAL____ Stomach ache; abdominal cramps
____ Nausea
____ Vomiting
____ Esophageal reflux (heartburn)
____ Frequent diarrhea
____ Frequent constipation
____ Bloating; intestinal gas
____ Decreased appetite
____ Increased appetite
____ Food cravings
____ Weight gain (____ lbs)
____ Weight loss (____ lbs)
____ Nausea
____ Vomiting
____ Esophageal reflux (heartburn)
____ Frequent diarrhea
____ Frequent constipation
____ Bloating; intestinal gas
____ Decreased appetite
____ Increased appetite
____ Food cravings
____ Weight gain (____ lbs)
____ Weight loss (____ lbs)
SKIN____ Rashes or sores
____ Eczema or psoriasis
____ Eczema or psoriasis
OTHER____ Hair loss
____ Mitral valve prolapse
____ Cancer
____ Dental problems
____ Periodontal (gum) disease
____ Aphthous ulcers (canker sores)
____ Mitral valve prolapse
____ Cancer
____ Dental problems
____ Periodontal (gum) disease
____ Aphthous ulcers (canker sores)
COGNITIVE____ Difficulty with simple calculations (e.g., balancing checkbook)
____ Word-finding difficulty
____ Using the wrong word
____ Difficulty expressing ideas in words
____ Difficulty moving your mouth to speak
____ Slowed speech
____ Stuttering; stammering
____ Impaired ability to concentrate
____ Easily distracted during a task
____ Difficulty paying attention
____ Difficulty following a conversation when background noise is present
____ Losing your train of thought in the middle of a sentence
____ Difficulty putting tasks or things in proper sequence
____ Losing track in the middle of a task (remembering what to do next)
____ Difficulty with short-term memory
____ Difficulty with long-term memory
____ Forgetting how to do routine things
____ Difficulty understanding what you read
____ Switching left and right
____ Transposition (reversal) of numbers, words and/or letters when you speak
____ Transposition (reversal) of numbers, words and/or letters when you write
____ Difficulty remembering names of objects
____ Difficulty remembering names of people
____ Difficulty recognizing faces
____ Difficulty following simple written instructions
____ Difficulty following complicated written instructions
____ Difficulty following simple oral (spoken) instructions
____ Difficulty following complicated oral (spoken) instructions
____ Poor judgment
____ Difficulty making decisions
____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
____ Difficulty following directions while driving
____ Becoming lost in familiar locations when driving
____ Feeling too disoriented to drive
____ Word-finding difficulty
____ Using the wrong word
____ Difficulty expressing ideas in words
____ Difficulty moving your mouth to speak
____ Slowed speech
____ Stuttering; stammering
____ Impaired ability to concentrate
____ Easily distracted during a task
____ Difficulty paying attention
____ Difficulty following a conversation when background noise is present
____ Losing your train of thought in the middle of a sentence
____ Difficulty putting tasks or things in proper sequence
____ Losing track in the middle of a task (remembering what to do next)
____ Difficulty with short-term memory
____ Difficulty with long-term memory
____ Forgetting how to do routine things
____ Difficulty understanding what you read
____ Switching left and right
____ Transposition (reversal) of numbers, words and/or letters when you speak
____ Transposition (reversal) of numbers, words and/or letters when you write
____ Difficulty remembering names of objects
____ Difficulty remembering names of people
____ Difficulty recognizing faces
____ Difficulty following simple written instructions
____ Difficulty following complicated written instructions
____ Difficulty following simple oral (spoken) instructions
____ Difficulty following complicated oral (spoken) instructions
____ Poor judgment
____ Difficulty making decisions
____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
____ Difficulty following directions while driving
____ Becoming lost in familiar locations when driving
____ Feeling too disoriented to drive
This is some really scary SHIT! I am not exaggerating, but just for a moment can you imagine living with one of those symptoms let alone most of them. This really is a chronic illness in every sense of the word.
