Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
wow,this is insane, is the definition of hell..how can someone be so sick without medical findings?! It seems like you are in a terminal stage cancer state without diying and go like this for decades.this is the devil on earth!..I am so sorry for this people,makes feel my symptoms a walk in a park..
yes..i definatelly understand! i was playing with fire. i get burned but fortunatelly not his badUnderstand now why you were warned not to overdo?
Or is this some kind of end stage that appears after beeing ill a few years?
3 siblings getting sick in diferrent times..it kinda suggest a genetic predisposition aswell..Here is a clip from a Norwegian news piece and interview of the 3 M.E. siblings shown in the documentary.
Did anyone catch the SCIG (gammaglobulin) dose the girl was taking?
While the need for hope is completely understandable, looking back, I think it undermined my efforts at managing my condition
Sorry for my confusion, but do you mean that having hope undermined your condition itself and made your symptoms worse or that putting hope in a specific treatment made you feel more hopeless if the treatment did not work?
and then risks it all, and is apparently encouraged to do so, by riding a bike, with a large trailer, up a hill for the benefit of the camera.
i'm very happy for her,but it seems a little bit dodgy, she can talk while riding the bike,so is in the comfort zone of exercise..from years of being confine to bed to be able to do that it's impresive if it's true..human body it's unpredictable after all,everything is posible..I agree and found that scene very strange both that her family and doctors would allow her to do such a physically demanding task after being bed-bound for six years AND that she actually was able to do it. I am thrilled currently that I can take a shower, wash dishes, and do laundry on my own. Driving a bike uphill while pulling a heavy trailer is beyond what I could have done before I got sick!!!
Thanks for that. It was very sobering to recall 22 hours asleep and too dizzy to stand. What fantastic mums! Watching Bjorn get a haircut was pitiful. thanks again
But then when I figured out some treatments that have actually helped me starting with moving away from mold, MCAS treatments, IVIG, etc,
@Gingergrrl Can you explain more about how your doctor concluded that IVIG would be an appropriate treatment, and for which condition? It's for the MCAS right?