1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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What are your symptoms?

Discussion in 'General Symptoms' started by Tulip, Mar 30, 2011.

  1. Tulip

    Tulip Guest

    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
  2. Francelle

    Francelle 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!

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