My Early Symptoms Were
Myofascial pain in legs, paresthesias so bad that it feels like someone is poking me with a cattle prod, electrocution in both groin nerv, then the all over generalized ache from what feels like the worst flu ever; you know the body flu, aches which don't seem to go away for days and days
How Long I Was Sick Before Diagnosis
89-93 was the terrible time; before diagnosis; drs' would dx me with something, take it back the next week, and this went on for years. dx, then retracted, dx, then retracted again. Makes one feel crazy, and then, a spinal differential by anesthesiologist, who told me that my pain was real.
How Many Doctors I Saw
Have lost count over the years. Trauma from work, sexual, then attempted violent trauma, from female boss, dodged her, didn't dodge the pedophile.
How Doctors Treated Me
from doctors treating me like i was crazy and needed psychiatric help, after trauma from drs. not believing me, yes I needed to see a psychiatrist. Been validated by rheumatologist, and anesthesiologist, who did spinal differential test
How I Felt Before My Diagnosis
Helpless, hopeless, painful.,couldn't walk without aids, neuralgia in groin nerves excruciating; labial pain, now I know is called vulvadinia. (sp), tmj, IBS, Fibro-fog induced crazy feeling, all from the medical community. Med comm treated me poorly until diagnosed, then validated and treated with a modest amount of respect and belief. The pain in groin nerves are so painful that it stops you in yur tracks, makes you scream out, which is embarassing, to say the least. People just look at you as if you are crazy, or have tourettes syndrome,
How My Diagnosis Changed Things
Dx changed things for me, because finally someone believed the strange laundry list of symptoms I had been complaining of for four years. It said, I am not CRAZY, this pain is real. Validated, yet traumatized by medical community for so long; sometimes still am, and getting help to Learn To Deal With It, as I was told i would need to do, has helped; cognitive behavioral therapy with psychiatrist for years and years, learning how to think, (when I can) in a totally new and different way has helped my psyche, but not my pain.
Advice
- rest
- give yourself permission to do nothing if that is what it takes
- don't ever give up finding, or trying to find good doctor, who believes in you
- give every modality a go, as some work for some, not for others.
- try to find good Doctor of Osteopathy, who will do soft body work.
- good psychiatrist to help you "deal" with past traumatic Drs. app'ts.
- stay away from hospital E.R.'s as they will just label you "drug seeker"
- find good rheumatologist, who believes in the condition, and knows test for it.
