I’m maybe up 2 hours a day. Heating food my mom makes for me (I’m 42) and go to the bathroom. Rest of the time I’m on the sofa or in bed. I can do more but I don’t feel like it. What’s the point of it? My life is over too.
I watched that Pentad video again and it’s freaking me out. That spiral is nasty. And he says stuff like ”it’s all falling apart for them”. Are you guys getting worse with time? @dyllanmurphy ? It has only been a few months but I can’t imagine feeling like this or worse for the rest of my life.
I'm sorry to hear that. It sucks that this is the new normal for us. It's looking more like EDS for me and if it is, it'll progress with time. I think my ME/CFS is being caused by EDS.
Everyday just feels like another endurance day to survive only to repeat it the next day. In the US we don't even have the option to die with dignity unless we are within 6 months of dying verified by doctors.
I wonder if a cure or even just better treatments will ever happen in our lifetime.
They have a more specific video re treatment.Did anyone tried these supplements from the presentation ?
Dr Andrew J Maxwell talks about something he calls The Pentad. It’s about EDS, dysautonomia, mast cell activation, GI dysmotility and autoimmunity. It’s a theory about how these things gets triggered and then a negative spiral is started. (It’s not good news)