I’ve been experiencing what I’ve deduced to be heat hives since the age of thirteen. It started a few weeks after I abruptly stopped taking an HGH Medicine named Genotropin. When the first time symptoms hit it felt like an odd tingling sensation all over my body except it didn’t hurt. Whenever the summer of that year occurred It soon developed into the “needles and pins” feeling. There have been periods where CU has completely gone into remission and I was able to live without the fear of feeling it. I’ve never had a skin rash or any immediately noticeable effects. However, I do start to sweat once the attacks stop happening.
I’ve had my blood drawn 5+ times, the doctors looking for thyroid issues, and nothing of the sort was found. My pediatrician assumed I was talking about herpes. A dermatologist prescribed Zyrtec to no avail. A neurologist assumed I was making things up and decided to do a regular checkup instead of suggesting a fMRI Scan or even having me run in place to see if I was lying.
To continue the story: During summer and I had to walk a quarter mile from the bus stop to my house. Which is a relatively easy stroll, except It felt as if I was being enveloped in a fire but pinpointedly all over my body. I was usually crying at my doorstep while waiting for my older sibling to answer the doorbell throughout the summer. I explained the symptoms to him and assumed he would tell my Father. Mysteriously, nothing was done about it. Instead of doing something about it myself I escaped into online video games day-in-day-out.
Fast forward to the age of 15 and I have to deal with high school gym class. It felt as if I was running through a valley of spikes nearly every single class. Before our warmups, I sat down mindlessly trying to enjoy the time before I had to exercise. Making sure not a thing that would stimulate my body temperature. Because being looked at as a freak instead of trusting my fellow peers and being accepted was too difficult of a concept at that time. I attempted to describe what it felt like to a gym teacher, however, they told me to get a doctors’ note. Again, I felt if the authorities in my life wouldn’t believe me, why would a doctor? I haven’t been able to live my life out of fear that a person will trigger the “hives” and then judge me for scratching myself since they aren’t visible.
They’ve caused further psychological problems such as depression, anxiety, undiagnosed agoraphobia and possibly undiagnosed PTSD. I’m not searching for a cure since that can be done by simply going to a sauna or exercising every day. What I want is a diagnosis for peace of mind. I plan to schedule an appointment for an allergy immunology doctor and to see if my Primary Care Physician is able to recommend me to a respectable Neurologist in order to see if the pain is detectable through a fMRI.
If there’s anyone else out there who’s struggling I hope this helps to see that you’re not suffering alone.
-Ajani
Nathan says
May 12, 2018 at 5:59 pmHi Ajani,
Hope you’re doing well! Just wanted to let you know that everyone on this page understands and has probably been through what you’re going through, keep staying strong and fighting! Don’t feel like you’re alone because we’re here to support you !
Marcia Hildreth McGrath says
May 14, 2018 at 6:50 amMy son almost never had anything visible either. Once in a while you could see a little pinkness on his skin, but most of the time, nothing. But he said it felt like he was standing in a hill of fire ants, and thought he might just lose his mind. So you are not alone. His was helped immensely by good diet changes, primarily, he eats no sugar, and no fruits but apples. Try changing up your diet some and see if it helps. But no, you are not crazy. A good Dr. should be able to validate your condition.
Coty says
May 14, 2018 at 12:19 pmAs others have said, you’re definitely not alone. I’m at year 11 of having no visible symptoms and a whole bunch of people who don’t believe me.
I found this website about 6 months ago, after 10 years of misdiagnosed CU and doctors, friends, family members doing all of the same things, writing me off as making a big deal, thinking it’s something else, thinking I’m making it up entirely.
– “I’m not searching for a cure since that can be done by simply going to a sauna or exercising every day. What I want is a diagnosis for peace of mind.”
I am right there with you. I want to know for sure and have proof to justify my behavior, to myself, and also to my peers. Sometimes it feels like it could never get worse, but then someone you’ve come to rely on decides they know better than you what you’re going through.
I visited a doctor after figuring out about CU (called around, one that had dealt with it before) and explained my history, symptoms, and my thoughts. She immediately started talking treatment options with me. I explained to her exactly what you said, I want a diagnosis because I’ve been made to feel crazy and question my own mind for 10 years. She told me that it was expensive and wouldn’t do me any good, that fixing the problem is a better route to take. I really tried to explain to her that I wanted a diagnosis, not for her to decide if I was correct, but she insisted that it was a waste of time and money, and that she wanted to help me get better instead.
I can definitely take her responses as meaning “I know you’re right, you explained it like you couldn’t be making it up” and that does make me feel better, it makes me feel like I’m not crazy. But, I still get those moments of panic when I’m around people I’m not really close to, if I start to itch, or turn on the fan at my desk to cool down. I’ve began being very very open about my condition with the people I see in my day to day life, even if we’re not close. To make it easy to understand, I tell them “I’m allergic to heat and sweat, imagine if your whole body had an allergic reaction at once just because you climbed some stairs too quickly”. Some people will get it, some won’t, some will treat you like you’re special/dying/frail.
I spent too long being held hostage by the fear and decided that I am no longer putting myself in situations that make my hives worse. I will leave mid-meeting to go cool off, skip social events that I know will stir things up, whatever it takes to feel better. You just have to decide which is more important to you: feeling better or APPEARING to feel better. It took me 10 years but I finally picked feeling better.
I really hope you get your diagnosis, and that if you don’t, you’re able to ignore the critics and keep yourself comfortable and sane. Nobody should have to deal with this, or feel like they have to.