Posted by Heidi/Mermie Symptoms are also caused by a loss of normal internal homeostasis; the body becomes unable to make all the appropriate physiological adjustments that allow it to maintain homeostatic equilibrium in response to the many changes to the internal and external environment that are part of everyday life. The body/brain no longer responds appropriately to homeostatic pressures, including (to varying extents): physical activity, cognitive exertion, sensory input, orthostatic stress, emotional stress and infectious stress. (Bassett, 2005) The real physical effects of ME/ICD-CFS Having ME/ICD-CFS is in reality like having bits of Multiple Sclerosis, AIDS, Alzheimer's, the flu, Arthritis and Epilepsy all thrown together at once, with some extra stuff thrown in that's all its own. It can leave you unable to read even a few lines of text, write, watch TV, or have the radio on. You can be unable to speak, or to understand speech in any way, and this is every bit as terrifying as you can imagine. Your throat, glands and muscles can all hurt beyond the reach of medication as you go in and out of fevers, unable to sit up for more than a few minutes. Your heart can beat erratically at random moments, sometimes for hours. You can have difficulty breathing or breathing can stop altogether. The room can spin with constant vertigo and you can become allergic or sensitive to almost everything. You can lie awake with insomnia all night, completely exhausted but unable to sleep. Other symptoms include (in no particular order): Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacuity, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ). There are also many more symptoms but I'm trying to be brief. As you can see not only does it affect what seems like just about everything physically but there are extensive neurological problems and injuries as well. With most illnesses it's one or the other but with ME/ICD-CFS you can be unable to recognise the face of your sibling sitting right in front of you and struggle to breathe all at the same time. Nothing is left except your mind. Severe ME/ICD-CFS can mean being left in a dark quiet room in agonising pain, unable to think or move, for months, years or decades. I think that says it all. It's hell on earth. Forget just trying to get through one day at a time as some days you have to take each second as it comes and each second can last for what feels like hours. *an unpredictable and unstable illness The severity of symptoms is also extremely variable. Maybe for an hour or two once a week or so I'll be able to do some typing, or maybe have a friend come for a quiet visit, write some e-mails or maybe paint, but these magical hours (or half hours more likely) are by no means assured and there have been times where months have gone by without one. There are also a large number of problems, cognitive as well as physical, that are constant, so I am never symptom-free or able to do such tasks without extensive modifications and careful planning beforehand. I also often pay the price for such activities by feeling much sicker 24 - 48 hours afterward, for hours or days. Usually days. But sometimes weeks or months. I am never sure what sort of problems I'll have to deal with when I wake up each morning - all I know is that they'll be serious, especially if I've done anything other than rest in the days before. Worse than 'usual' days also happen for no reason at all. This waxing and waning pattern is diagnostic of the illness. *severity Like many others with this illness (25 - 30%), I have severe ME/ICD-CFS. I am completely housebound and mostly bedbound. I am usually well enough to shuffle to the toilet and bathroom when I need to, I can turn myself in bed, and I can feed, dress and wash myself although these tasks are extremely difficult for me.
on 8/27/2007, 4:18 am
More than 64 distinct symptoms have been authentically documented in ME/ICD-CFS.
ME/ICD-CFS is also very unpredictable - symptoms constantly change from each week, day and hour to the next. I'll finally find a treatment or a way to work around a symptom I've had for months when it will gradually disappear of its own accord only to be replaced by something completely different but equally disabling. It's so frustrating.
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