I've been wondering for while now, if what I have is cfs. Massive cognitive defecit, unrefreshing sleep, been essentially bed bound for two years. There's other symptoms though that I'm not sure fit. Dryness throughout my system. Drinking liquids isn't refreshing and causes a weird rebound reaction of serious cotton mouth. What I'd describe as nerve pain and disphoria in my hands and forearms. Joints in my hands became really painful and my muscle hurt in a way that's unlike any natural muscle pain I ever felt. All the joints I could once stretch and click are now really stiff and I can stretch it out and click them (seems tied to the dryness thing). Stomach issues have been a real issue and my abdomen and back (kiidney area) is really stiff and painful.
All came following a period of nasty illness. I'd be really interested to hear whether you see anything familiar in those symptoms.
I will start by saying that ME/CFS is a misnomer because it is not characterized by chronic fatigue, a symptom which is present in many other chronic illnesses.
Above all, the core symptom of ME/CFS is post-exertional malaise (PEM), which is a worsening of symptoms (and/or appearance of symptoms) after any physical, cognitive or sensory exertion* that is disproportionate to the activity in question.
PEM is peculiar in that it almost never happens right after an activity but is delayed by a day or two (24-48h, more rarely up to 72h). Most people with ME/CFS describe PEM as a "crash", wherein they feel as though they have come down with a bad bout of flu combined with a hangover and jet lag.
If you cannot identify a pattern where activity, be it physical or cognitive, causes PEM as described above, then it is very likely that you do
not have ME/CFS.
What attracted my attention most of all was your mention of a trigger - the "nasty illness" which you pinpoint as the onset of your symptoms. ME/CFS is triggered by an infection in about 60-75% of cases, the most typical example being infectious mononucleosis / glandular fever, but also Covid (see e.g. long Covid) and SARS, swine flu (H1N1), Lyme disease, Ross-River virus, giardiasis, etc.
Cognitive impairment and unrefreshing sleep (as well as modification in sleep patterns/structure) are required symptoms for the diagnosis of ME/CFS, so this does ring a bell.
As for your muscle pain, does it feel as if they are burning with lactic acid, not unlike working out at the gym? And does muscle fatiguability come on quickly when you exert yourself physically? Those two elements are the "myalgic" part of "myalgic encephalomyelitis" (ME).
What are your stomach issues? Do you struggle to digest food, i.e. it stays in your stomach for hours after you eat a meal and you are very nauseous or even vomit? This would be gastroparesis, which some people with severe ME/CFS suffer from.
Arthralgia (joint pain) is not a characteristic symptom but some people with ME/CFS have it. But note that it is not an uncommon symptom, generally speaking, so it can be due to other causes and it is worth investigating differential diagnoses.
What I cannot relate to ME/CFS in your description is the sensation of dryness. The only condition that I know of where dryness is a characteristic feature is Sjögren's syndrome, an autoimmune disease, and some of its symptoms overlap with those of ME/CFS.
I hope this helps; please also see the
National Academy of Medicine's diagnostic criteria for ME/CFS (endorsed by the CDC), and let me know if you have other questions.
* Exertion =/= exercise: exertion can be any task in your daily life, such as working, walking, socializing, or in more severe cases reading, brushing your teeth, standing up, etc.
