Oh my gosh. I don’t even know what to tell you except that I support you. A lot of what you post, I am familiar with. In fact, you seem to post just after I’ve had a similar episode of my own. I wonder if we are in the same stage of degression or something?
I commend you for going to the hospital. I don’t really have the ‘cahunas’ to do so myself. When I feel that bad, I don’t need to be ‘kicked’. I just go to bed wondering whether or not I’ll wake up. I used to worry about having all of my affairs in order but, since I have little to work with, now I just sorta figure that ‘it is what it is’.
I, too, think my doctors might know something is wrong BUT they like to tell me I’m fine to pacify me or make sure that I don’t worry. Of course, that makes it worse! I know I’m not fine! I had a doctor tell me, recently, that my chart was well documented. It just doesn’t match up with how I’m treated when I see a doctor.
They now seem to be trying like crazy to refer me to specialists BUT unless the specialist understands connective tissue disorders and comorbid diagnoses, it does little good. If you separate the 157 symptoms, they don’t sound dreadful separately. They can’t seem to grasp them all – well, neither can I and I am ‘saddled’ with the mess every single day!
My cardiologist is wonderful and I specifically requested one that understands genetic disorders due to my EDS. They recommended him. I now realize that he specializes in congenital heart defects. Imagine how much good that does me. Just like Dr. Cheney says, he doesn’t correlate CFS with the exact diagnoses that ‘ties right to it’!. Also, CFS doesn’t sound that bad -BUT IT IS A HORRIFIC NIGHTMARE! It should be called something that sounds way worse than might be cured by a nap. Ugh!
Anyway, I support you. God bless you.