How common is this condition and how bad does it get? Is it a life sentence with truly only a 5% chance of recovery like I have read?
I haven't been diagnosed with this but I've been unwell with a huge range of symptoms for over 3.5 years on and off now since my second child was born. I've had periods where I've felt ok and periods that have extended my symptom list such as after covid and my moderna booster vaccine.
I definitely have dysautonomia symptoms which began during my first covid infection in Oct 2021. I think I mainly fall just below the POTs criteria, but something is off there. Some days worse than others. Sometimes have lowish BP - recently had a few spells of feeling like I'm about to faint after sudden air hunger and an off balance/adrenaline rush feeling - scary! Adrenaline rushes without an axious mind, some temperature dysregulation, nausea, ectopic heartbeats, fatigue, burning feet, tingling patches, headaches, blurry vision, tongue ulcers, breathlessness, slight tremor, air hunger, restless legs, limb weakness, malaise, sore throat that comes and goes - there are probably more!
All of these symptoms come and go. Some days I will have 1 or 2 symptoms, others I could have 10. I don't have any autoimmune conditions, have had 2x normal brain and spine MRI's, numerous ultrasounds, 2x chest x rays, 2x nerve conduction tests and around 100 blood tests! Everything looks great...but it's not.
I do NOT have anxiety or depression - only these symptoms cause that. I'm not on any medication. I am seriously contemplating booking in to see a functional medicine doctor in London during the school holidays (I'm a teacher), to get to the bottom of this. I can't wrap my head around being perfectly healthy and normal to now living like this without a cause.
Interested to hear of other's experiences with M.E/CFS and your thoughts!