Desperate for help (Long I'm sorry)

Sorry if this is hard to follow as I'm extremely sleep deprived.

Ive been dealing with CSU for probably 3 months now, the first 2 weren't so bad, I had hives everywhere but the itching wasn't ruining my life, 1 zyrtec daily was enough. It came on randomly out of nowhere, I have a shellfish allergy so I thought maybe I had eaten something crosscontaminated. After about 2 weeks they weren't going away and I had been trying to limit things I was taking/eating to try and figure out what the cause was. I had been taking advil daily for like 3 months for migraines, because sometimes I get really bad periods of them but during this "trial" I cut it out. Then I had awful joint pain so I took one, my lip swole up BADLY. I thought wow i must have developed an ibuprofen allegry or something. went to the gp and she thought that was the case, told me to avoid NSAIDs and she gave me a prednisone pack. 2 months later and it was still here but it suddenly took a turn for the worse. for the last 3-4 (idk anymore) weeks its been devastating. I have abolustely no quality of life, I spend probably 6 hours a day just bawling my eyes out becauase the itching is so miserable. I can't sleep, when I'm lucky I maybe get 2-3 hours of sleep after probably 12 hours of trying at times. I'm so insanely exhausted but bed just makes my flare that much worse, when its already intolerable. I got bloodwork done recently- though limited- as I do not have insurance. I found out I have hashimotos (runs in the family my mom has it) and my tsh levels were almost at 5 and TPO 89 iirc. Low in vitamin D as well. I found out during all of this we had someone in the family who has CSU as well and that you can take 40mg of zyrtec daily. So I've been doing that for minimal relief. I'm taking pepcid ontop of it when I get the periods where all I can do is cry, in a desperate attempt to help, I can't tell if it does or doesn't. However, when I was on prednisone again last week , 20mg for 5 days, I had no relief until I added pepcid. I had minimal hives for like..? 3 days ..? I genuinely cried because I was so insanely grateful I thought I had gotten through a really bad flare but, it's back. Idk what to do or try- my situation is a little tricky at the moment. I'm engaged and my fiance is British(I'm American), and I had just submitted my visa when this shortly came on after. I currently have no health insurance as it wouldn't make sense because I'm moving so I dont work ATM. I tried to look at maybe like rhapsido etc to see if maybe starting something like that would be an option for me, (if they could prescribe a few months of it ??). I couldnt find any financial aid i could apply for though, as my parents claimed me as a dependent and our household income was too much. My parents CANNOT afford the medication so I'm really confused what I'm supposed to do while going through this entire visa process. Once there I'll have to apply for another visa then start the wait for a specialist so I need to have some sort of "life is tolerable" bridge for a few months to a year (I'm not sure how long it'll be). I'm taking 40mg of zyrtec daily (tried allegra didnt seem to work as well but I cant really tell), vit d 50,000IU, magnesium, k2, and pepcid as needed. treating migraines as needed with maxalt and tylenol. I'm going back to the GP today and I'm going to ask for sigulair, (Doxepin (AI suggested this idk)), but ideally cyclosporine. I can't afford going to a specialist or to continue going back so I've mostly been doing my own research and trying to notice what helps me or doesn't. I know heat/pressure/friction drive me insane, I only wear bamboo clothes now cus I cant tolerate any materials. The other day I had bad lip swelling and half of my throat was swollen as well as my entire lower face. I was too scared to go to the ER because I'm not sure if it will affect my visa and I can't afford it. The visa process is very expensive and we need our savings!!! That day i ate pad thai and I'm not sure if the soy was a trigger or high sodium- idk. I've had severe lip swelling three times now and i get bad bad bad joint pain in my elbows and wrists, I beleive because of angioedema, and i get random super swollen part on my body. Sometimes even my entire hand ,like my ring won't even fit those times :\. I'm currently eating a low histamine diet just in case, as well as gluten and dairy free because the gp suggested it for hashimotos. My mom does this and said it helped her levels but idk I see mixed stuff about that online, but I'm desperate for any solution. I try to sleep with the fan on with loose bamboo clothes with only a sheet (which I hate because my cold intolerance is so bad). IDK what to do anymore, I have no quality of life. This was supposed to be a great step towards our future and an exciting time for us but it feels my life has been stolen from me. I feel like a burden. I'm desperate for any solution if anyone knows any? I know about xolair and rhapsido but I have no access to it atm. Idk how I'm going to function for the next few months on about 2 hours of interrupted bad sleep a night. I didn't even realize humans could survive on this little sleep. I barely function, I can't think clearly, my emotions are everywhere. I'm so so so exhausted, I want nothing more than to just sleep. If anyone has any suggestions please let me know, I'm so desperate. Or how to cope with all of this. It feels like a marathon, a workout without an end, or like every minute is an hour. My life was only starting but now I feel it's gone and it's a struggle to get by hour by hour. I know this was a lot so if anyone went through all of this and read it thank you and sorry about that, I'm genuinely just so desperate. I'm fully grieving the life I had.

Posted Aug 18, 2026, 12:07 PM UTC

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