Hear from others like you who are living with CIU.1,2
Hear patients tell their unique stories living with CIU and reflect on their journey to diagnosis.
JENNIFER: My name is Jennifer.
MELINDA: My name’s Melinda.
ROBERT: My name is Robert.
DONNA: I’m Donna.
ALL: And I have CIU.
DONNA: I remember very vividly the first time I broke out in hives.
JENNIFER: I had just moved into a rent house.
MELINDA: We were on our honeymoon.
DONNA: And I was out back doing some yard work that day.
ROBERT: I noticed a uh, itching sensation around my waistline.
DONNA: And when I looked down, I saw I was covered in hives.
JENNIFER: I noticed that I had a small spot under my breast that was raised and extremely itchy.
DONNA: Immediately, I thought it was something outside.
MELINDA: Just some mosquito bites.
JENNIFER: And it didn’t take very long before the hives completely covered my body from my scalp to the bottoms of my feet.
ROBERT: It was something new that I hadn't experienced before. I just figured I was having a rash, a heat rash.
JENNIFER: And it was almost hopeless at times because you didn’t know what was going on with you, what was causing this. I felt frustrated. I was doing everything that I knew I could do to try to find a solution or a trigger or an answer.
DONNA: I had gone through at least 10 doctors minimum, and everyone had a different opinion, a different diagnosis. They weren’t answering my questions. So, that's when I started doing my elimination diets, don't eat this, don't eat that. I started being concerned that maybe it was something I was exposed to in the past. Was it environment? Something I ate? I tried different clothing, I tried different detergents and nothing seemed to make a difference.
MELINDA: It’s just really puzzling, and you want to find out why.
ROBERT: It was just a part of life at that point, where I had them on a regular basis for a good two years before I found uh, the right doctor.
DONNA: I remember after I had an exam with the allergist, he came into the room and he says, "Yeah, you have CIU." And finally, I had an answer.
JENNIFER: It’s an awesome feeling to not have that as the very first thought when you wake up in the morning is, “Ugh, what am I gonna look like today, what’s going on?”
ROBERT: I’m very happy to say that I have been hive-free for four months now.
ROBERT: It truly comes down to finding the right doctor that can uh, diagnose your problem, and, and get you on that path of recovery.
DONNA: Don't give up. Be your own advocate.
JENNIFER: I look back and I think of the long journey that I had. And they always say that you can’t really truly enjoy a rainbow without going through the rain. And that is very true. With that being said, it’s really nice to be on this end of the story.
You are not alone, hear four different stories of people with CIU. Listen to others as they share their experiences and messages of support.
Robert, long-time delivery service truck driver and Florida resident, describes his struggle living with CIU and the steps he took before finding the right doctor.
ROBERT: My name is Robert. I am 60 years old. I live in Florida, and I have CIU. I've been driving a delivery truck for 30 years now. The first time I got hives, uh I noticed a uh, itching sensation around my waistline. It was something new that I hadn't experienced before. And I just figured I was having a rash, a heat rash, at the time. I tried to wear looser clothing, maybe get a bigger size pants, uh which I didn't like wearing. I really truly thought my hives was related to my seatbelt being, you know, tight around my waist for a 10 to 12 hour day.
As far as my lifestyle, I'd like to think, I don't drink alcohol, I don't smoke. I eat pretty much anything um. And you really start thinking, well, what can I cut out that might be the cause? Years prior, we had some allergy testing done, very extensive. And we got little cards, what we were allergic to. But, it was just a part of life at that point, where I had them uh, on a regular basis for a good two years before I found uh, the right doctor. And it was just, just part of life. I would come home and I had them. And I kept rubbing topical ointment on it with no luck. When I was first diagnosed with CIU, I just happened to have a new specialist moving on my route. And my very first visit with him, he diagnosed me with CIU. I felt excited, because I've never had any doctor or specialist tell me what my problem was. I really thought it was just from sweating. The key factor in the CIU is, it it truly comes down to finding the right doctor that can diagnose your problem, and, and get you on that path of recovery.
That's the hardest part, is getting a hold of somebody who has experienced those symptoms, and uh, then you can share with them what you've been through, and uh, hopefully lead them on the right path. I'm here today to encourage others who might be battling this same situation that there is hope out there, so seek a specialist and find that hope that will change your life.
Jennifer, contract petroleum landman and resident of Louisiana, shares her story of going through 23 doctors before finding an accurate diagnosis and relief from her CIU.
JENNIFER: My name is Jennifer, I’m 36, and I live in Louisiana, and I have CIU. The first time I got hives was in 2013. I was living in West Virginia. I had just moved into a rent house. It was warmer weather outside, and I noticed that I had a small spot under my breast that was raised and extremely itchy. I noticed the next day that it had spread and there were more spots that were also round and extremely itchy and raised.
I knew then that it wasn’t a heat rash that I thought it might have been, and I needed to go to a doctor. And that’s when I was diagnosed for the first time incorrectly. And it didn’t take very long before the hives completely covered my body from my scalp to the bottoms of my feet. I had hives consecutively every day for two years. The only advice that I got from the doctors when I went to see several of them was, “Don’t stress."
So I began on my own to log everything, everything I ate, how I felt, what I did that day, what clothes I wore that day, any kind of contact that I had, because at some of the diagnoses they thought it was an environmental trigger. And it was almost hopeless at times because you didn’t know what was going on with you, what was causing this, and I would kind of prepare myself every morning when I would wake up to go into the bathroom and face myself in the mirror because I never knew who that was gonna be or what that person was gonna look like. But I tried to always go in with a positive attitude. I was first diagnosed with CIU by an allergist specialist, and the first thing I did was call my mom and tell her that this was a real thing, it did exist. I went through about 23 doctors before I had an accurate diagnosis of CIU. It’s really nice to be on this end of the story versus going through it at the time.
My best advice for others who are having the same symptoms is to go and see an allergist. My allergist knew immediately what was going on with me and started a plan to help me.
Melinda, city manager and Utah resident, recalls breaking out in hives during her honeymoon and road to finding a path forward for treatment.
MELINDA: My name’s Melinda, I’m 43, I live in Utah, and I have CIU. The first time I remember having the hives was the morning after I got married. So we were on our honeymoon, and I thought at first they were just some mosquito bites. And throughout the week they progressed and got worse to the point, when I got back from the honeymoon, I said to my husband that, you know, “I need to go see a doctor.”
And we went to urgent care and they told me it was hives um, but it was pretty severe by that point. I had no idea what was causing the hives, and so you kind of go through this whole thing in your mind of, maybe it’s my detergent and should I change that? Washing your sheets or washing your clothes to make sure there was nothing that might have impacted what was causing the hives. I tried changing my diet and eliminated some things. That didn’t seem to help.
It’s just really puzzling and you want to find out why. I had a good support network. My husband took a lot of time off work and would go to doctor’s appointments with me. It took really about I would say eight weeks from the first time I saw a doctor to getting an official diagnosis. I was really fortunate to be able to find a specialist who knew what CIU was, and he knew that’s what I was suffering from.
It was a difficult decision for me to decide whether or not to talk about CIU. My job can be very public, I work in city government, and so you kind of question what things you might want out there. But I ultimately decided that it was something that I wanted to help others, and if they could feel like they weren’t alone, because they could see someone else who was suffering with it. I think it’s important for people to see an allergist because they really have
The tools and the knowledge to help you deal with your CIU and to find treatment options that will work for you.
Donna, former locomotive engineer and New Mexico resident, vividly remembers the first time breaking out in hives and recalls her journey to CIU management with her allergist.
DONNA: I’m Donna. I'm 56. I live in New Mexico and I have CIU. I have a set of 13 year old twins that I share with my partner and her ex, and that's a full-time job. But when I'm not with them, I have my own hobbies. I do some silversmithing, I keep bees, I do snake relocation and I'm very proud to be a chaplain for our local fire department. I remember very vividly the first time I broke out in hives.
I was living in Arizona, and I was out back doing some yard work that day. And that evening, I'd gone inside and I noticed that I was itching like crazy, and when I looked down, I saw I was covered in hives. And immediately, I thought it was something outside, like I’d gotten into bug bites, because of the itching. So I grabbed a flashlight, I went outside and I looked where I was doing my work, and I couldn't find anything that I thought was the cause to my hives. Usually when my hives come on, I can feel them tingling.
What happens is I start itching, and then I get these really big, red welt-looking things all over my body. And when they leave, I end up with a big bruise. Before I went to my allergist, I had gone through at least 10 doctors minimum, and everyone had a different opinion, a different diagnosis. So, that's when I started doing my elimination diets, don't eat this, don't eat that. Was it environment? Something I ate? I tried different clothing,
I tried different detergents and nothing seemed to make a difference. I remember after I had an exam with the allergist, he came into the room and he says, "Yeah, you have CIU." And finally, I had an answer. He explained to me that there was no cure, and, but it was manageable. I felt like I had come full circle. Like, finally, I had answers to my questions. I was very fortunate in that I have a fantastic partner that is very supportive. She has a lot of patience with me, a lot, which is needed, and gives me room when I need it. I'm very open with my CIU. I think it's important to be, so that people know they're not alone, and that you know you're not alone. My message to others would be don't give up. Be your own advocate. Don't settle for somebody that doesn't quite understand it, because there is a way to management. You just have to get the right help, and you do that by being persistent and open with your CIU symptoms.