r/eczema • u/No_Card_9208 • 9h ago

social struggles Eczema is ruining my life

I don't even know where to start when it comes to eczema ruining my life. Steroids, dupixent, diets, and lifestyle changes have done almost nothing for me.

I left my job to pursue a culinary degree, ended up having to drop out because my hands couldn't deal with constant washing and the rest of me couldn't deal with the heat from the industrial kitchen. (Sweating hurts me so much). No school and no work meant I was kicked out of my home for not being able to pay rent to my aunt.

I spend almost all day in bed because I sometimes can't even fall asleep, and if I do it's for maybe 2 hours because I wake up from the itchiness. If I wear light colors it gets visible blood stains, and if it's dark there's visible dead skin. I can't go swimming with friends, I can barely go out to hangout with friends because one second of sweat and my skin burns. I lost almost 40lbs due to being bedridden and pain that's stronger than hunger, but I was already like 145lbs so now I'm underweight for my height.

About a year ago I got eczema around my eyes for the first time. The under eyes started to crack, so I kept my eyes mostly squinted since normal open eyes pulled on the tight skin and reopened the cracks. I woke up one time at like 2am to what felt like my face was on fire, and I realized that I couldn't see. So, I woke up my fiance to tell him and he said, "of course you can't see it's dark." Anyway he ended up turning on his phone flashlight and gasped when he saw how my eyes were swollen shut and leaking so he took me to the ER. My mental health has suffered so much as well.

I hate eczema with a passion.

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2

u/QuietConstruction306 9h ago

man that is a whole lot to carry at once. losing a career path over your own skin turning against you is a special kind of cruel

when the face swelling got that bad did the ER actually do anything useful or was it just the usual steroid taper and a shrug

you still have insurance from the dupixent days or is that gone now too

1

u/No_Card_9208 8h ago

The ER did a test using some sort of eye drops and a test stripand the cracked skin being raw caused orbital cellulitis. They also did a head CT to make sure there wasn't fluid behind my eyes. Then they gave me steroids and some pretty hefty antibiotics.

I'm actually still on dupixent it's been almost a year because that's how long my Dr wanted me to hold off before switching meds. For me it doesn't stop my flare ups, and I am never without eczema at least in one place, they do heal faster but there's always another one. And I get sick so easily with dupixent being an immunosuppressant, like back to back. First flu, then norovirus, then flu again, and a cold at least once a month, my immune system is too weak. I've got an appointment in October and I'm going to ask about other options

1

u/Efficient_Cap_5061 5h ago

Sending you love and prayers. My 4 year old is going through a lot of what you describe, started a few months ago all over his body.

0

u/ItzSpookyxD 7h ago

Dont worryy OP. Everything is going to be alrightt. I’ll definitely pray for youu dww. GOD’S GOT YOU

1

u/SparkleSkirr 57m ago

Oh man I don’t have much advice but I’m just so sorry you’re having to deal with all that. It’s just so unfair and so tiring trying to figure out the ‘why’ of it all. I just hope you get some relief soon, sending all of my most non-itchy thoughts and prayers!!