Am I Normal?
i didn't discover I had cold urticaria until I was almost 60. I suddenly began hiving up with everything. A cool breeze. The AC in the car. Misty day with slight breeze. The refrigerated section of the grocery store. Ice cream. A frozen drink sent me to the ER.
it took several days to figure out what was causing the reactions. When I did there was a battery of tests. I discovered I had hep c with a high viral load. We thought that is what triggered the disease. I was treated and cured and we thought symptoms would go away. They lessened, but did not go away. As I learmed more about the symptoms I realized I'd actually had CU for a long time. As far back as I can remember I would get little needle prick sensations on my skin after I showered. Especially if the air was cool. Or if a fan was blowing. It wasn't really painful, more tingly. Like that mouthwash burn. I thought this was normal. I thought everybody felt like that. Imagine my surprise when I started mentioning it and asking others. It was far from normal.
Then other things started making sense. I had a lot of pain when getting shots. Many times the nurse, or dentist, or doctor...would look at me funny. I was told that shouldn't hurt that bad. Of course now I have them warm the meds before injecting. Wow. What a difference. IV fluids would burn my veins so badly I my veins would rebel. Causing the port to be moved more frequently. Now we know why.
I'm so thankful that my symptoms really did not interfere with most of my life. But, I have heard from so many who are young and suffering. No one believes them. Teachers send them out in cold weather. Medical profession ignore pleas for warm fluids. national rare disease day has events every year in February. I hope we will all try to speak about CU. Get the word out.
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