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  1. #1
    Junior Member
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    Jul 2013
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    Default Severe dryness and hypersensitivity, please help me

    I have an unholy trinity of very very fragile pale skin, Sjogren's syndrome, and neurogenic rosacea. The result is rather extreme hyper-sensitivity and general agony. Severe dryness that presents as a sort of painful, dessicated tightness rather than flaking or scaliness; flushing; painful facial redness and swelling that changes the shape of my face; severe sensitivities to heat / cold / wind / sun; allergies to EVERYTHING. My face is so reactive I feel like I have no skin barrier. Lotion doesn't absorb, but sort of sits on top of my skin and gets progressively grubbier looking and more irritating as the day wears on. I am essentially allergic to the sun and am incapable of being outside in anything but 60-65 degree, non-windy, dark or completely clouded over weather. I can't wear a scarf or wear my hair down or let anything touch my face at all, really, because every touch steals precious moisture and the skin is so sensitive it feels like ripping a band-aid off a sunburn. I have to slather my face in huge gobs of vaseline and sleep on a silk pillowcase just to make it through the night.

    I've tried the usual 'sensitive skin' products- Eucerin, Vanicream, Cerave, Cetaphil, etc- they all burn. I don't know what I'm reacting to in them, but the only product lines I can use are the 'intolerance' products from Avene and EltaMD's sunscreen for people who've just had skin procedures done. Makeup is completely out of the question as even the most basic and 'hypoallergenic' products leave my eyes raw and swollen for days after. I'm in the midst of my first real Sjogren's flare, and that combined with the seasonal change has made my skin even more intolerable (which honestly I didn't know was even possible but here we are). I am genuinely afraid of what will happen when we turn the heating on in the next few weeks.

    I can't bear another 6 months of being so swollen I can't open my eyes all the way or recognize myself in the mirror. As much as I hate being trapped inside all the time, at least I can hide in the shade and air conditioning during the summer. There's no escape in the winter, it's back and forth between icy wind sandblasting my face and hot dry air roasting it. It feels like my entire face has been rug, sun, and wind-burned all at once and then sat in front of a fireplace for an entire day to dry out. It hurts to smile and open my eyes, and sometimes the swelling is so bad it's physically hard to do so.

    I will take whatever advice you can give me. Dermatologists have been extremely unhelpful, they hear 'rosacea' and start pushing the sulfur soaps and metronidazole. The last few have just sent me to their esthetician who has been equally baffled. I have also developed what appears to be erythromelalgia or some kind of neuropathy with intense flushing in hands and feet, don't know if that's common around here but no doctor has been helpful with that either. Please help me, I am SO MISERABLE.
    Last edited by Eclara; 3rd November 2016 at 10:56 AM.

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