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Painful, Burning Facial Flushing

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.
5 Responses
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Avatar universal
Rose, my daughter Julia has the exact same symptoms. I truly could not add or take anything away from your description. She has been to several docs but no one has a clue. A dermatologist treated her for Rosales with a laser treatment. That has not had any effect yet. Have you found anything about what you might have?
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1 Comments
Treated her for Rosacea.
Avatar universal
Have you found out what caused this to happen yet.  This sounds like my symptoms
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Avatar universal
I'm going crazy get this burning my face and neck and one ear like the worst sun burn on fire turns red doesn't last long could come back in 10-20 minutes could have up to 20 a day.Been to five doctors they had no clue went away for months it's back again.Started 3 years ago weeks after I had a flu shot.Need any advice or help I can get I don't know what doctor to see next.Patty
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Avatar universal
Thank you for your reply. I will ask my neurologist about the possibiity of RSD.
What if any treatment will you receive for RSD?
Happy Thanksgiving. Wishing you health!
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Avatar universal
I have somthing what you have, but I have burning hands and feet and at time all over my body.  Medhelp said I might have RSD, Reflex Sympathetic Dystrophy.
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