21,104 members16,728 posts

If I only knew then what I now know!

Oh what a disease this is!!! I just found out that my cold urticaria which I have had for the past three years is from the lupus. They think that I have had lupus much longer than they knew. When they connect the dots, it all fits they say. five years ago they started treating me for low blood sugar, they thought the symptoms fit, but when I almost passed out from the cold my regular doctor did an ice cube test on my arm and found out I had cold urticaria. My fault is not telling that when I touched something cold my hands would swell and burn. If I told them when it started it would have clued them in on something. Now since the lupus was just diag. this past March they are finding that things that have been wrong for the past few years would have pointed to lupus, but no one did the tests. Until January when everything just went completly haywire.

On the cold urticaria, I live in the US in Michigan our winters can be quite bad, so I cannot go outside without being completely covered and then only minutes when it is really cold. I have to have an epy pen just in case I get stuck somewhere where there is no heat. Imagine being in your car dead of winter and it breaks down I have roughly 15 minutes to get inside somewhere warm. In November our temps go down to the 60-50's that is when I start to have issues. It just gets worse the colder it gets. Some people would say move to warmer climate but then there is the aircondioning factor to worry about. In grocery stores you have to have gloves on in the cooler section I touch anything cold, does not need to be frozen, and I have reactions. I breath cold air and it affects my throat and nose. Thus the need for the epy pen. Now throw in the lupus and the sun issues.

Love our Immune Systems!!!!!

4 Replies

You are between the Devil & the deep blue sea, hot or cold climate that's the ?

I wish you well.

Love & Sunshine



HELLO well since last May I have been suffering from real coldness even in the heat (if we get any sun in UK) also I have goosebumps from my head down. I have Raynauds but this is certainly different. My husband tells me off for putting on the heater its a wierd sensation.

All the best


Hi on the urticaria front I too had cold induced urticaria but as my consultant predicted it has almost disappeared after 6 years - I also have the other cold issues of feeling cold when it's warm - taking calcium has helped this. I know yours may be different but I hope this gives you some hope x


I have had cold urticaria since I was a small child and realized that I have symptoms of Lupus but I can't find a doctor that will listen to me. They look at me like I'm dumb. I have never met anyone else with cold urticaria but have been searching my whole life to find someone that I can relate to.


You may also like...