My genetic doctor told me, in a non-insulting ‘duh’ sort of way that chronic fatigue is part of EDS.
I have a bit of a tough time calling it fatigue because the general population believes they can relate to it and thinks, ‘well, take a nap’ or ‘get some rest’. I have to call it weakness (though that doesn’t describe it either). Exhaustion, however, people think that after a good night’s sleep it resolves. It shouldn’t be described by a mainstream word. There is no escape, no relief, no end… It’s a trap that makes no sense. It’s as if I haven’t slept in years. I realize how incomprehensible that is. I am fully aware of how illogical it is. I, myself, am dumbfounded by what I experience. I can’t believe it myself – and, yet, I am trapped in it – every day! Crazy, right?!
GiveMyDaughtertheShot, You describe our fatigue well. Do you also run out of whatever you need to think? I told my neurologist that I was running out of something, what could it be? I told my husband that with this type of “fatigue”, if the house were on fire, I wouldn’t be able to move — it would have just burn around me. I just made the last (I hope) tweak to an over-the-counter medication that should correct this (unless there is hidden cancer or something the doctors missed). I will announce it soon, OK? I wanted to be VERY sure I hit everything (genetic defects, propensity for autoimmune problems) and then I needed to be certain we didn’t develop a tolerance for it, and I needed to be sure it kept working! Yes! I ran a small trial in order to get the patent (and to be sure it wasn’t just my kids and I who responded). This is something you won’t need to ask your doctors for! YAY! Give me about 2 months and I’ll get it out, OK? Hopefully, it will be about the same time the info about Diamox gets out. Then we’ll have more control about these aspects of our illness and won’t need to work so hard to explain it… Good grief. POWER TO THE PEOPLE! ha. More layers to come, but these first two are a HUGE step! 😉