Feel like I'm on Titantic & sinking fast...thru deep fog into a deeper dark sea... Pain, overwhelm, dysfunction....
I've been swimming in pain & Losses... of abilities to do or even think ...
what to do? where-how to get thru THIS ??
try to spit out something tangible.
After years of going Drs, neurologists, tests, medicines... I feel worse, more confused, Lost .... what's happening??when did it really begin??
with the accident 10 years when Hit by car?? "minor" traumatic brain injury--concussion along w/ other injuries that took long to heal w/persistant pain;
Dx of post traumatic Fibromyalgia, covered much --chronic pain, fatigue, sleep problems, other "strange" manifestations--but not all esp. the episodes of "drop attacks" , which look like Cataplexy. Tests "ruled out" sieuzes and Narcolepsy. my PCP Dr. at that time felt may be due to cervical spine -acquired Chiari. Consulted Neurosurgon who only stated did NOT need surgery. In years since many more "falls", head injurys-concussions- one of worst since hit by car, was in a freaky accident weeks ago. Wheelchair lift on van thrust out & cracked me in head; split open, knocked me out. Since, have constant headaches, nausea, confusion, memory, fatigue, sleep problems, more.. that seems to be post concussive disorder that's not resolving. My current PcP felt these symptoms from Pain meds I've been on for years, and now on drug holiday. Since I stopped the long acting narcotics, which previously had been helping me -except for the crazy making neuropathic pain that hits hardest at nite & prevents sleeping, I feel much worse. Pain has exaccerbated as have sleep problems. Old pain disorders resurrected w/ a new vengance. Chronic pelvic pain, stabbing pains in old trauma areas--legs, neck, back; and more, worse neuropathic pain, and weakness esp. on left side.
My old neurologist, had dx'd "idiopathic" neuroapthies many years ago, then dx of CIDP (which was "contested' by other specialists) I was treated w/ IvIg for few years (neuro felt IvIg could help other "problems") tho I did NOT experience the relief many other patients reported, did see worsening decompensation when off Ivig. Neuro reordered Ivig last summer but denied by new insurance. Appeal for Ivig in limbo...
I'm sinking... what to do, what is "wrong", what is right!!
I'm rambling, as I just want to get something out & try to begin again.
Perhaps thru Community (tho big & difficult for me to navigate)

My history is a bit complex, I've been to many Drs, have tried MANY meds (hoped something would help but allergic or adverse reactions to most meds

I went to new DR/rehab physiatrist (spelling??) DO specializin in brain injuries & treatmt of neuro & chronic pain dis. He seemed concerned about head/brain injury -is referring to neuro-specialists for more tests, But like most docs focus on symptoms. #1. need for SLEEP
I agree. I've tried many meds , herbs, etc. and because of my Hx of adverse reactions, often opposite of intended benefit , I'm ...apprehensive, but try to stay open to things that may, can help...
I'm losing my thought train & energy now... but want to get this out, hoping it makes some sense, that someone may have suggestions, support ....or even answers to some of the many quesrtions that brought me here to this Big community in my Quest, for Help, support, more..
I've been trying for so long to find something for my problems
these chronic pains & resuling challenges (Sleep, daily function, Life)
I'm overwhelmed again w/ fatigue-for me the worst--Not having energy. My mother & brother used to say when going thru various phases of their (terminal) illness--"Can [usually] tolerate the pain but fatigue... is like not being alive"...
I've said more than intended but perhaps not enough... or in best way, but for me now it's the only way I can. "When I know better, I'll do better..." In so many ways I do know better... I know I "should" be eating better but don't (nausea, taste & smell distortion); exercising!!! would be great but it's a challenge to walk to bathroom; meditaion, imagery, "positive" thinking-- Wow, would be wonderful,
not sure what else to say except

Blessings to all...