First and foremost, I just want to express how bloody grateful I am that this support network exists — scrolling through even just momentarily has given me so much more comfort and awareness surrounding CIU than any doctors or websites ever have, all thanks to your selfless contribution.

I’m approaching 12 months with CIU — I lost many onset/progress photos when my previous phone died but I’ll attach what ones I do have. The severity fluctuates day-to-day but overall it seems to be getting worse. I have had countless extensive blood tests, a colonoscopy/gastroscopy, ECGs, skin biopsies, a H. Pylori breath test (and likely more tests I’ve forgotten to mention) in addition to multiple medication, dietary and lifestyle changes. Still no answers!

While I credit myself for continuing to roll with the punches (as we all should!), I simultaneously feel like an exhausted and emotionally fragile shell of my former self. I’ve developed a “f*ck it” attitude, questioning why I should continue taking care of my health when I’ve done it all along and still developed CIU. And YES I beat myself up daily for allowing myself to get so down about this when I know it’s not a death sentence and that I have so much in life to be grateful for.. just can’t shake this feeling of being suffocated and wanting to claw myself out of my own skin.

You’re all absolute legends. I’m saddened to see so many others affected by CIU, but knowing we have a place to both vent our own frustrations and provide support to others feeling the same way is awesome.

Discussion

Jessica Anderson Welcome to the group! I feel how you’re feeling. It’s like why bother trying if it’s still going to be here? I know we need to stay positive and not stop looking for answers but it’s hell. I’ve had CIU for 16 months now. I’ve never been more depressed, suicidal, or all around in a bad mental state. You described it perfectly. It’s like being suffocated. I always say if the military is looking for a new torture tactic, itching non stop is the way to go. I’d literally give my kidney and my arm if it meant hives stopped. It’s hell. My face randomly swells, my hives blow up my fingers, my body is just in pain. You’re not alone on this journey, message me if you ever need anything 

Chetan Dhamecha You should detox body by alkaline water

Nicole Carrie Chetan Dhamecha I started to do that when I move back into my house after it being remediated from black mold and the hives started a few weeks after I had been drinking alkaline water for a month. Do you feel like this was die off symptoms?

Tiffany Lee Have you been tested for parasites?

Muquddas Haider Qureshi I have had it for 20 years now. Luckily I have been able to almost control it. In my case medication actually made it worse. Some dietary changes and probiotics actually helped.

Brian Benedictson Find a good allergist and there is a bunch of treatments that progresses to cyclosporine as a last resort.
It worked instantly for me and I was off it in 5 mos