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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What are your symptoms?


Everyone one seems to have different ones, i'm really interested to see how others are affected by this illness.

Mine are:

Severe flu like exhaustion
Post exertional malaise
Aching glands
Tonsillitis - pretty much chronic
Night sweats
Flu like feeling through my entire spine
Inability to regulate my temperature
Aching organs
Cognitive problems - trouble speaking, crossing the road etc


Senior Member
Victoria, Australia
The symptoms I have now are not all the same as when I first became ill in 2007.

. Moderate fatigue which lasted for three months, which progressed to extreme fatigue lasting for four months in the first year - now minimal fatigue.
. Heavy eyes & eyelids - still occur periodically.
. Fasciculations - initially 30,000 per day; now only about 1,000 per day.
. Neuropathy and neuropathy pain ++ this has not abated at all. This includes deep aching of leg muscles.
. About eight bouts over 18 months of extreme++ gut cramping with no associated diarrhoea.
. Stiffness of limbs now ?? alleviated with analgesia (Panadol Osteo and Tramadol and I suspect Lyrica has helped too).
. Elevated Heart Rate
. Orthostatic Hypotension - now much better with Florinef
. Burning and irritated tongue - now mch better since four months antibiotics.
. Post Exertional Malaise. This for me is NOT fatigue but a total draining of all my energy, high heartrate and inability to even stand up on those days when it occurs, which fortunately is only a few days per month mostly.
. Cognition issues - inability to take on board new and complex information, concentration, mental fatigue!
. Nausea/ early satiety/epigastric fullness/vomiting - diagnosed with Gastroparesis on GES scan
. Feeling like food stuck in oesophagus - diagnosed with Oesophageal Dysmotility/paralysis with manometry
. Constipation
. Hyperreflexia

These are just the symptoms I remember from the top of my head but I know there are others, which musn't be too troublesome at the moment or I would remember them - lol!