I really need your help.The symptoms described below began in Feb 08. As yet, there has been no conclusive diagnosis and the ailment is impacting every part of my personal and professional life. I have been to 50+MD's and the Mayo Clinic in FL 5 times. Please send me any information/suggestions that may help identify and treat this condition, and also kindly forward this email this to others. I know a cure is out there! Thanks for helping me get my life back.
(age44, white female, engineer, no meds, excellent health until 2/08, non-smoker, no alcohol)
Severe painful burning, facial flushing began mid Feb, became debilitating in May. Frequent, 20-30xday,extremely painful burning, red, slight swelling, facial flushing mainly on cheeks, sometimes nose, forehead or ear, not always symmetric, sometimes random area on face 1-3”diameter. Burning sensation feels as if a hot iron is pressed on my skin and is unbearable. Flushed area is hot to the touch, doesn’t perspire. Symptoms triggered by: lying down(I sleep sitting up),bending over, tilting head, warm place(74+),lack of air circulation, humidity, physical exertion, emotion, spicy food,hot food/drink, hot shower, sunlight, bright artificial light, computer/TV screen. Symptoms occur sometimes w/o trigger. Painful symptoms wake me up every 2-3 hours at night. Flushing is only relieved by pouring cold water over area, blowing with a handheld fan and eliminating the trigger. It takes 20-60min to relieve. Often 1or2 cheeks will stay red, slightly swollen and burning most of the day.I am confined to my dark home since June-as walking outside in heat, daylight, evening humidity, in a car in daylight triggers, immediate very painful facial flushing. I’m unable to go into stores, offices etc, I react to bright lighting, and lack of air circulation. Even in my cool dark home, I put cool water on my face every 20-30 minutes to relieve burning. I am unable to work as my profession requires work on the computer and outdoors. Often with the facial flush the rest of my body (hands, feet) is cold. Symptoms began 2 weeks after completing Carac fluorouracil cream treatment on nose for AK precancer lesion.
Thank you so much.