Hi, it's me again - the "this is so damn miserable and feel like I can't take it anymore" woman.
After 1.5 years of utterly disabling GCA symptoms (after never being sick in my life - very active), I am literally running on emotional and mental fumes.
It took months of demeaning (too young; just stress or hormones; work on my anxiousness and any emotional problems; or, I see migraine people all day long and no one complains about their symptoms like you) appointments and treatments before I found a neurologist who would clinically diagnose me with GCA. I have the classic symptoms in spades and smart people here have agreed with me.
I have been on 6 months of prednisone - only thing that touches the pain - I have been still just barely functional from pred side effects and deep fatigue. MORE Importantly, my inability to taper at all (even with pain med help) made my neurologist wary of the diagnosis. I was feeling pretty "stuck" too.
So, went to GCA specialist who said "I have bad news for you - I don't know what you have but it's not GCA. You must come off pred and we'll biopsy in 4 weeks after and put that diagnosis to bed once and for all.
So, as I am really struggling with pred side effects, and was making no progress at all, I am ok coming off the pred. Relieved even,
But, this will take months and this hS been going on so long. My life is so very small.
I feel I live in a ghost town of my old life.
It's so difficult to be in this awful place ever day, 24 hours a day. No breaks,
Other people seem much better than I on this board . I just cry a lot and wonder how to get through the next shitty 24 hours.
Any feel despairing? I often do.