My “Mystery Disease” Symptoms
by Sunday Oliver
No, I didn’t have a “light case” (whatever that means),
and it wasn’t “fatigue” or “adrenal fatigue” or any of the other things a lot of people conflate with Mystery Disease illnesses.
The “Before” Symptoms come from a medical intake form that I filled out at one of my worst points.
I had to attach a long list of other symptoms because I had so many weird neuro-symptoms that were not on the form.
Intense = pins me down in bed or makes me unable to think about much of anything else.
Less Intense = affects my life on a daily level, but doesn’t pin me to the bed, not on my mind all the time and is workable with planning.
Not intense, but weird and annoying = as it says.
Unexpected & Enjoyable Side Effects = Surprising, but they do happen!
All Symptoms in BOLD were my Major Ones
Symptoms I had then:
Intense Symptoms
Lasting a Year or More
• insomnia
• 24/7 nausea
• 24/7 gut cramp
• anorexia (eating was too painful, and I lost appetite.
• dizziness, to the point of passing out when sitting or standing, or sometimes raising my head from the pillow.
• poor concentration
• muscle pains
• lack of muscle recovery after exercise
• sore muscles
• lack of muscle recovery
• extremely sore neck, worse after exercise
• intense, rapid heart rate for no reason
• mental slowing
• changes
• mood swings
• memory loss
• mentally fuzzy, brain fog
• impaired executive function
• cognitive impairment
• anxiety
• hypersensitivity to sound
• hypersensitivity to visual stimuli (like patterned wallpaper)
• extreme fatigue
• weakness
• sleeplessness
• non-restorative (dozy) sleep
• joint pain that had me bed bound and unable to turn doorknobs
• loss of balance
• clumsiness
• depression
• sudden crashes for no reason, I did no more than usual
• sudden better days for no reason
• talking was a huge, exhausting effort, even ten minutes
• standing was a huge, exhausting effort, even ten minutes
• confusion when faced with a decision (like, which dish to wash next)
• walks made me feel as though I have the flu
• sitting up in bed feels like an athletic event
• sometimes difficulty waking (“the same sleeping as waking”)
• more sensitive hearing
• shortness of breath
• need to lie down-immediately -anywhere I am- or I pass out
• muscle spasms at the slightest or even no movement
• deliberate movements with hands are difficult
• weakened hand grip
• difficulty holding small objects
• abdominal pain and cramps
• sense of fullness during and after meals
• loss of appetite, disinterest in food partial loss of taste or smell
• unintentional weight loss
• nausea
• difficulty gaining weight
• weakness, fatigue, exhaustion, sluggishness
• specific foods or beverages aggravate indigestion
(There were about four that didn’t, the rest all did in varying degrees)
• stomach pain, burning or aching 1-4 hours after eating
• difficulty breathing
• muscle spasms, weakness, trembling, cramps, twitching
• raw fruits and veg aggravate gut pain
• general feeling of poor health
• unable to concentrate, irritable, confused
• aching muscles
• progressive, bad fatigue after exertion or stress
• dizzy when rising
• slow mental processes, forgetfulness
• unsteady, stiff gait and movements
• numb feet
• prolonged recovery after exercise (like, days…)
• difficulty breathing and palpitations with exercise
• dizziness and spots before with exercise, and sometimes “exercise”
meant lifting my head from the pillow
• exhaustion with minor exertion
• difficulty understanding spoken or written word
• loss of coordination
• momentary inability to recognize people or things
• falling due to passing out and neurological incoordination
• dizziness when standing from sitting position
• sleep (actually twilight doze) during the day
• difficulty sleeping
• feeling unrefreshed when waking
• walk slowly and clumsily
• lightheadedness, fainting
• lose balance easily – stumble, feel clumsy
• limbs feel too heavy to holdup
• need 10-12 hours sleep (but don’t really get it)
• muscular weakness begins in leg and moves upward
• impaired sense of touch, smell, taste
• preemptive resting before any activity – from hours to days
Intense Symptoms
Lasting Less than a Year
• arms can’t raise higher than shoulder level, or there’s
excruciating pain
• hands can’t open doorknobs or jars without multiple tries or tools
• knees excruciating pain whenever I bent them to stand, sit, change position,
lying down
• gallbladder pain
• severe joint pain
• pain and stiffness through body
Less Intense Symptoms
Lasting a year or more
• burning urethra
• painful urgency, no UTI
• spontaneous vomiting
• altered bowel habits
• sore abdomen
• “gloved” loss of sensation hypersensitivity to touch
• inability to feel things well through touch
• hypersensitivity to cloth texture
• hypersensitivity to temperature
• prolonged hypnogogic state transitioning to sleep
(when I could get there)
• tinnitus
• intolerance to loud sounds
• shortness of breath
• nervousness
• numb feet
• pain, multiple varieties not otherwise described
• spasm when I turn neck
• spasm when I lift hand
• spasm when I do just about any dang thing
• mishearing words
• misreading words
• hard to write longhand (typing is easier)
• impossible to make music
• overstimulated by hearing music
• exhausting to be in large gatherings
• overstimulated when I stay up late, with poor or no sleep
• sense of moving underwater
• very slow reactions
• feeling as if I’m not really here: I’m a ghost
• headaches
• decreased or blurred vision
• frequent urination
• left shoulder and chest pain
• constipation
• diarrhea
• rectal bleeding (occasional)
• skin rashes or lesions (intermittent)
• bruise easily maybe
• urination difficulties occasionally
• high blood pressure
• burning or itching
• high blood pressure
• numbness
• painful wrists
• heavy sweating with no exercise
• difficulty swallowing
• slurred speech
• intermittent ache on one side of head spreading to cheek,
jaw, neck and shoulder
• head feels heavy
• pounding or rapid-beating heart
• strong emotions, thought or smell of food aggravates stomach
• bright red blood following bowel movement
• irritable, moody
• fatty foods cause indigestion
• depression
• salty food craving
• slow heartbeat
• fast heartbeat
• muscle pain in calves or thighs when waking (also numb
heaviness)
• falling because of weird perception and lost balance
• strange or difficult urination
• loud snoring
• rapid heartbeat lying down in bed, no obvious cause
• sensitive to minor changes in weather or surroundings
• difficulty seeing at night
• specific points on body feel sore when pressed, especially abdomen
Less Intense Symptoms
Lasting less than a year
• blurring of vision
• nervousness off and on
• eczema
• pelvic cramps
• nosebleeds
• spontaneous vomiting even with empty stomach
• alternating constipation and diarrhea
• chest pain
• lung infections
• rectal pain or cramps
• unexplained itching abdominal sensitivity
Not Intense Symptoms, but Weird & Annoying,
Lasting more than a year
• burning tongue
• sore mouth for no apparent reason
• teeth sensitive to hot or cold
• alteration and loss of taste “cobwebbing” feeling
• numb, heavy lower legs
• hands feel gloved
• feet feel socked
• sudden electric shock-like pains
• psoriasis
• excessive sweating
• blotchy and very pale skin
• small red dots under the skin
• choking, smothering sensation
• cold feet
• cold hands
• extreme sensitivity to ambient temperature
• pale skin from lack of circulation
• excessive belching, burping, or bloating
• sores in corner of mouth
• clear watery discharge from nose drip with certain foods
• ringing in ears
• organs twitching
• feeling of extreme dryness
• loss of skin elasticity
• thinning hair on scalp and body
• bumpy skin on back of arms
• armpit and groin swelling
• outer third of eyebrow thins
• sensitive to light through skin or eyes
• dryness of eyes, nasal passages, mouth
• nails loosened, pitted, discolored, striated
• mild lower back pain
• sudden hot flashes
• sudden chills
• spontaneous sweating and also • swelling under armpit
Not Intense Symptoms, but Weird & Annoying,
Lasting Less than a Year
• canker sores
• painful urgency to urinate but nothing to urinate
• my fingernails stopped growing
• pale lips, gums, eyelids, nail beds
• blushing with no apparent cause
Symptoms I have now:
Intense Symptoms
Lasting a Year or More — None
Intense Symptoms
Lasting a Year or Less
right shoulder, arm, and hand pain that made it hard to use them
Less Intense Symptoms
Lasting More than a Year
• physical work is unusually tiring for me
• mental work is less tiring but I can only do a few hours at a time
• I have to budget my walking and physical work, and my budget for that is still small.
• I have to rest frequently between tasks
• I very occasionally have difficulty sleeping
• I still use sleep medicine to sleep
• I stay in bed about 10 hours a night
• shoulder aches
• right shoulder occasional mild pain
• right hand deformed from psoriatic arthritis
• right hand some remaining numbness
• right hand grips, but is still clumsy at some tasks
• loss of upper and lower body strength due to lying in bed for ten years, some regains
when I’m tired:
• trouble focusing
• I may read some words wrong
• a lot of effort to converse, speak, or read
• slight to medium brain fog, depending on how far
I’ve pushed it
• stiffness in joints and muscles
• heavy and clumsy-feeling lower legs and feet
Less Intense Symptoms
lasting less than a year
• my knees are still a little stiff, but instead of standing and dropping into a chair, I can gracefully flow down into seated position
Not Intense but Weird & Annoying,
lasting more than a year
• occasional psoriatic flakes on my eyebrows, cheeks, or around my mouth, especially at full moon – smaller and fewer than they used to be, but still visible.
• Sometimes heavy and clumsy-feeling lower legs when I first wake, or when I’m tired
Not Intense Symptoms, but Weird & Annoying
lasting less than a year
• nose bleeds
Unexpected & Enjoyable Side Effects
* less grey in my hair
* hair grew a foot after decades of being the same length
* neck and shoulders more flexible than before I was sick – they were a solid mass
* then my vision improved so I passed my driver’s eye test without needing glasses. (I’d been having trouble reading street signs before)
* my lifelong depression about the state of the world keeps fading, even though the world seems to be getting more chaotic
* more able to reveal my feelings, even in public more able to steer myself through rage and fear and into more useful state
* able to allow other people’s stuff to roll off me, using my skills (what used to take days or weeks of work and depression now takes minutes to a day or so)
* fluid walk from the hips
* lower back pain gone. Before I was sick, this was something I had to attend to a lot, with frequent bad flareups. Now I just don’t have it.
* My eyes got wider and my face changed shape: I hadn’t realized how my tense muscles were stretching and pulling at it.