Symptoms

• Words back to front.
• Letters back to front.
• Memory loss.
• Confusion
• Inability to think
• Difficulty processing information
• Difficulty with mental maths
• Difficulty or loss of reading ability

• Upsetting
• Silly/foolish/unaware
• Blank fog
• Empty-minded
• Not understanding
• Unable to explain
• Lost abilities
• Unsafe

Nerve pain

Muscle pain

Head pain

New type of Headache

Eye pain

Allover body pain

Gut pain

Hard to impossible to alleviate

Burning, throbbing, irritated,

Throbbing, crushing, crawling

Inflamed, throbbing, extreme, acute

Sharp, constant, focussed, diffuse

Swollen, dry, irritated, itchy, burning

Stabbing, screaming, agony without end

Throbbing, acidic, intense, hurts to touch

Feels like massive Internal pressure

Mitochondrial issues

Thyroid issues

Adrenal  Insufficiency

Pituitary issues

Unrefreshed by sleep

No or reduced energy. Limited energy disappears quickly. Limbs feel too heavy to move

• Unable to sustain use of muscles
• Muscle loss

Exhausting, weakening, suddenly unable to hold things, stand, move or walk. Extremely debilitating, incapacitating. Drop things. Pain is increased. Risk of falling or tripping

• Post-exertional
• Neuroimmune exacerbation

Symptom deterioration and reduced energy after effort, even slight, both from thought and/or physical action.

May be delayed onset and long lasting impact. Instantly drained of all energy and ability. Worsened

• May affect individual muscles or limbs, neck. partial, one sided or total body paralysis
• May occure with muscle overuse or effort

• Gut muscle tremor

• Individual muscles may be affected. Or one sided or total, body paralysis
• Stiff or flaccid muscle tone
• May experience loss of sensation, including eyes, mouth or jaw
• Facial palsy, inability to speak
• Throat paralysis, gastroparesis, (needs specialist input). Various triggers
• May be brief or lasting hours, day, months or years, transient or permanent
• Loss of proprioceptive awareness, maybe periodic, occasional, several times a day/night or all day/night
• Associated temperature fluctuations
• Nausea and swelling

• Disorientation
• Inability to tolerate movement nearby
• Difficulty tolerating motion
• Unable to tolerate movement past you

• Touch sensitivity
• Inability to tolerate pressure, movement on or contact on skin
• Difficulty with blood pressure cuff and blood withdrawals, catheters etc

• Nausea, vomiting, stomach swelling, IBS symptoms
• Food intolerance
• Can affect drugs and food absorption
• Can impact breathing
• Weight loss/increase

Difficulty in knowing what to eat. Pressure, swelling and tummy ache. Exhausting, distressing, physically isolating, difficulty with diet and enough calories.

May be extremely painful

• POTS
• Dizziness
• Blood pressure/heart rate issues
• Temperature dysregulation
• Sweating
• Gut issues
• Visual disturbance

Cannot stand still, posture related difficulties, feel cold or faint, confused, weak. Heart pounding/fluttering.

Too hot or cold, shivery.

Tipping/tilting intolerable

Light headed, odd sensations, distressing, confusing, disorienting, may feel frightening, unsafe at risk of falls

• Circadian Rhythm shifted
• Sleep paralysis
• Increase in pain
• Intense dreams
• Continually waking or sleeping
• Difficulty waking up
• Unrefreshing sleep

• Uncontrollable, sudden changes in mood
• May be linked to hypoglycaemia

Suddenly weepy, irritable, may feel irritated suddenly, argumentative, out of balance

• Pins and needles – not just in hands and feet, other less usual places as well, like back of head

• Swings in temperature
• Difficulty keeping warm or cool
• Hot sweats, shivering, not necessarily relating to external or room temperature
• May experience night sweats
• Extremities may be very cold

• Noise sensitivity
• Tinnitus may accompany it
• May trigger pain and paralysis
• Ears may be itchy, hurt, feel inflamed
• May need personal sound protection, if tolerable and/or environmental protection –  windows, doors, walls, sound-reducing curtains
• Inflammation

Painful, irritating, disturbing, distressing, isolating, separating and vulnerable.

Can have devastating impact, utterly disabling.

Sound can be heard acutely. Some may tolerate earplugs or noise cancelling headphones/ear defenders, if pressure of them tolerable.

A quiet environment essential

How it affects a person

• Light sensitivity, light is painful, after image for ages after exposure
• Minimal exposure may be intolerable
• May vary in intensity or worsen with deterioration of other symptoms
• May need photo-reactive or dark glasses
• Curtains closed, extra thick, additional blinds or black-out curtains

Extremely painful, agony on sudden exposure, may be distressed or irritated by exposure, weakened or paralysed.

May need total darkness –  a huge adjustment

• Eyes will not hold focus
• Tunnel vision
• Darker vision
• Loss of colour awareness
• Staring eyes, difficulty opening eyes
• Dry eyes, numbness, feel swollen
• Double letter vision, difficulty reading
• Lose of visual acuity
• Eye muscle fatigue

Difficulty seeing clearly, reading , writing, interpreting.

Limited or impossible to read or write.

Confusing, unsafe,, likely to fall or bump into things, spatial disorientation, difficulty with co-ordination and focusing

• Perfume and chemical sensitivity, rashes, swelling, nausea, headaches, throat irritation, swallowing difficulties, weakness. Worsening of symptoms. Coughs, increased mucous

• Paradoxical reactions to drugs, bad reactions
• May need lower dosages to be effective
• Need to be aware of packaging/fillers in drugs
• General and local anesthetic issues  i.e. sensitivity
• Difficult with dental treatment

Bad reactions, feel horrendous. Impact can be long lasting or damage can be permanent.

A huge concern not knowing what is safe to take

• Increased frequency of urination
• Some people may need a catheter
• May experience incontinence and/or frequent infections
• Risk of pressure sores

May experience difficulty with getting to toilet or commode.

May need support and help to use a toilet.

Time consuming and exhausting