Symptoms of ME/CFS

Below is our first rough draft of a comprehensive list of symptoms of ME/CFS.

Debilitating fatigue and weakness, that can be so severe that it can render a person bed-bound, unable to speak or eat.

Cardiac Abnormalities
The most common cardiac abnormalities include: low blood pressure (neurally mediated hypotension (NMH) or postural hypotension (a drop in blood pressure on standing.)) An immediate or delayed increase in heart rate on standing is common in ME/CFS and if of more than 30 beats per minute is known as Postural Orthostatic Tachycardia Syndrome (POTS). Both a fall in blood pressure and raise in heart rate cause the blood to pool in the feet and the patient may faint, feel dizzy, or temporarily lose their vision. Patients always feel better when sitting or lying.
Patients may also have palpitations (when you can feel your own heart beat) and abnormal heart rhythms (arrhythmias.) There may be swelling of the hands or feet (oedema.) Patients are often very pale especially during a relapse.

Cognitive (involving the process of thought) Symptoms
If patients exert themselves mentally more than they can cope with then cognitive symptoms worsen. Common cognitive symptoms include problems with the following: short term memory, performing multiple tasks at once, concentrating, following instructions, speaking (e.g. slurring words), communicating or understanding speech, comprehending difficult concepts, finding the right word when talking or writing, being able to read or focus, IQ, listening when there is excessive background noise e.g. in crowds, disorientation, feeling spaced out, not feeling real, making decisions and making memories (amnesia).

Neurological Symptoms
People may have the following: Muscle twitches, extreme reflexes, pins and needles, numbness, light sensitivity, noise sensitivity, difficulties with proprioception (spacial awareness,) and coordination (clumsiness).
The most severe patients experience: touch sensitivity, temporary blindness, seizures, myoclonic jerks, stroke-like episodes and becoming comatose for periods of time.
Emotional symptoms worsen during periods of exceeding physical limits and worsening physical symptoms, and are caused by damage to the brain like other neurological symptoms. They include: emotional lability (intense emotions, ie mood swings), anxiety and panic attacks, depression, grief, anger and guilt.

Visual Symptoms
Include: blurred vision, sore or burning eyes, nystagmus (when the eyes flick back and forth rapidly), light sensitivity (photophobia), dry eyes, difficulty focusing, worsened vision at night, watery eyes and floaters.

Endocrine and Neuroendocrine Symptoms
Symptoms worsen when under stress and include: Inability to control body temperature, feeling cold and shivering one minute and overheating, sweating and having hot flushes the next. Pateints usually have a subnormal body temperature, (unless overheating and then a low grade fever), extreme sweating including night sweats, cold peripheries (especially hands and feet) and swelling of the extremities. There may be dysfunction of the thyroid, pituitary and adrenal glands.

Symptoms arising from exertion
When a person performs physical activity beyond their own limits, symptoms worsen and include: severe muscle weakness or paralysis which can take a few days to return to previous level of strength, inability to repeatedly lift even light loads although they may be lifted once or twice without too great difficulty. Muscle weakness also affects all organs including the heart. Flu-like symptoms, cognitive dysfunction, and breathlessness (dyspnea) also arise after exertion. Patients may sometimes become hyperactive and feel high, leading to overexertion.

Hearing, Vestibular (balance) and speech symptoms
Symptoms relating to hearing and balance include: tinnitus (ringing or similar noise in the ear), ear pain, dizziness, vertigo (sensation of the surroundings moving), balance problems (ataxia), hearing loss, hyperacusis (intolerance to normal sound volume and often high pitched sounds – sudden loud noises may startle the patient), intolerance to movement, or vibration. Extreme sensory input may lead to seizures in severe patients.
Speech may be weak, hoarse, or absent. Speech may also be slowed, with stammering or slurring of words.

Hypoglycaemia
Hypoglycaemia-like symptoms relating to low blood sugar.

Symptoms of the immune system
People usually find the following symptoms worsen before or during a relapse: tender or enlarged glands (lymph nodes), flu-like symptoms which include a slight fever, sweats, chills, cough, sore throat, feeling of ‘un-wellness’ (malaise), aches and pains.
Most patients have poor immunity to infection which they get more frequently and for longer, often causing relapses. Some more severe patients however have a decreased susceptibility to infection.
People often get multiple chemical sensitivities (MCS) e.g. smell or contact with perfume, or glue. People often get worse or new allergies, and become sensitive to medications.
 
Gastro-intestinal symptoms
Difficulty swallowing, intolerance of alcohol, bloating, abdominal pain, increased or decreased appetite, food allergies and intolerances, nausea, diarrhoea, constipation or both, heartburn (oesophageal (acid) reflux), metallic taste.

Joint symptoms
Pain in the joints (arthralgia) without redness or swelling. Patients may have an abnormal gait due to pain or joint stiffness.

Muscular Symptoms
The most important muscle symptom is fatiguability of the muscles, which may have normal power initially but after exertion it will take several days for strength to recover. Patients at times may not be able to make facial expressions during a relapse. There may be also be shooting, tingling or burning pain of the muscles, extreme weakness or paralysis, spasms (contraction or cramping), tremors, twitching (fasciculation), numbness, myoclonic jerks. In patients who are bedbound, the muscles waste or atrophy, the patient will also have difficulties with chewing, swallowing and digestion.

Pain
Patients have varied experiences of pain including: various types of headaches, a feeling of being bruised and tender all over, aching and weakness in the muscles after use for a few days, pain behind the eyes or of the eyes themselves, ear ache, sore throats, joint pain, dental pain, sharp pain in major muscle groups, pain on urination, chest pain, abdominal pain, cardiac pain and pain in other organs. Severe patients become sensitive to touch and feel pain in response to stimuli which aren’t usually painful e.g. the weight of their own clothes. Some patients may also have fibromyalgia. Women may also have painful periods (dysmenorrhoea.)

Reproductive Symptoms
Irregular menstrual cycles, worsening of symptoms during or before a period. In the severely affected menstruation (periods) may disappear completely. Patients also experience lowered libido and impotence.

Respiratory Symptoms
May include: breathlessness (dyspnea), coughing, wheezing as well as an erratic pattern or breathing.

Skin, hair and nail symptoms
Skin may be: extremely pale, dry and peeling, have rashes, acne, extreme bruising, prone to infections, facial flushing. Severe patients may lose their fingerprints. Hair falls out and grows poorly. Nails are usually weak, with a bluish nail bed, prone to fungal infection and ridges.

Sleep Dysfunctions
Sleep is un-refreshing, often disrupted, with reversed circadian rhythms (sleep/wake cycle.) Insomnia (difficulty getting to sleep or maintaining sleep) or hypersomnia (excessive sleep.) may occur. A lack of deep sleep is also found. People often have vivid dreams and are more prone to nightmares. Although some patients do not dream at all. Sleep paralysis may also occur when the person wakes up but cannot move for a period of minutes to hours, this is extremely scary. Waking dreams are more frequent as well. Patients often have a difficulty waking up.

Urinary Symptoms
Polyuria (urinary frequency), urgency, dysuria (pain or burning on urination) difficulty passing urine, incontinence and/or nocturia (excessive urinating at night.)

Symptoms caused by weather changes
Patients are intolerant or extremes of temperature, an increase in symptoms such as migraines, malaise and insomnia a couple of days before the weather changes. Pressure changes can cause sweats. Temperature or humidity changes can cause an increase of muscular pain.

Changes in weight
Weight increase or decrease often irrespective of changes in diet.


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