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Like millions of extraordinarily strong women before me, my symptoms are being brushed off as anxiety, PTSD, and a slew of other BS. Many of you may know at least some of the symptoms well: tingling, nerve pain, hair loss, weight loss, new food intolerances, tremors, fatigue, hot/cold hands and feet, swollen lymph nodes, heat/cold intolerance, acne, (self-diagnosed) POTS, and a folder full of “normal” blood work - so far. I’ve only had 1 really bad flare-up that lasted a couple months ago. My sed rate just came back as 8. My ANA was negative. Protein and ketones in urine were not acknowledged as abnormal. Neither were the high lymphocytes and bilirubin in the blood. I feel so defeated, belittled, and neglected. I am a woman, and I know something is wrong with my body that reaches beyond the boundaries of the “mind.” Doctors and nurses have made me question my sanity. Am I bulimic? Do I throw up and not remember? It’s amazing how much power we can give other people if we let them. I want to hear your stories. What tests were used to diagnose you? Which specialists? How many years did it take? I’m ready to give up and wait for whatever this is to eat me alive.
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