I have been having the exact description of all these symptoms since I was 5 years old. I’m a now a 24 year old male.
I’ve been to doctors to test me for Lupus. My pediatrician told me I had “idiopathic urticaria” and told me to take Benadryl. I honestly felt so alone. People told me they get heat rashes too but not like this. The burning, the itching, the looks from people who think I have some awful contagious disease or something has just been hard dealing with.
After 19 years of not knowing what was wrong with me I stumble across this webpage and I’m so glad I did. I now have this sense of relief that there is a name for this condition and there’s other people who have the same experiences and troubles I do. I’m a Registered Nurse and never once even learned about this in school.
Even professors were baffled when I’d be stressed in class or from exerting myself in clinicals and thought I was having an allergic reaction to something. My only concern is the website states the average person had these symptoms for about 7 years or so. I’ve suffered from this for more than half my life. Is this really ever going to end? Will I have this condition for the rest of my life?
Thanks,
-Cody
This post as submitted by a reader.
Anonymous says
I Too Can Remember Having Symptoms Since I Was Five. I Also Suffered From Dry Itcy Eyes And A Shocking Sensation On Right Side Of Face When Drinking Or Eating (It Was Random). Very Few Times Did I Break Out In Hives.
When I Was 28 I Was Allergic To The Sun And Would Break Out With A Rash.(For 6 Yrs)
I Still Suffer The Itches Without The Rash.
2001 Went To See A Neurologist Because I Could Not Handle It Anymore I Was Ready To Jump Out The Window. He Had No Answer And Put Me On Gabapentin. tHis Med Did Help Because I Still Had The Itch But It Was Much Milder.
The Stingy Itcy Sensation Used To Be Lower Legs. Now I Have Them Full Body Including Top Of Head.
Neuro Refered Me To Rheumy And Here It Is 2014 And They Say I Have Dysautonomia, Sjogrens, Blepharitis, Raynauds, Degenerative Back Disease.
My Labs Were Positive ANA 640 Speckled And SSA 9 SSB 2. Positive Lip Biopsy For Sjogrens.
Good luck
B says
I never had any major skin issues, but have had some photosensitivity where the sun sorta hurt so I didn’t stay out in it for a long time. Then about five years ago when I stayed out in it (or exercised, took warm baths, ate spicy foods…just got HOT!) started breaking out in these awful painful hives! They’re truly awful. NO one can truly get it I don’t think, unless they’ve been through it.
I have had autoimmune thyroid issues since I was 16 and was diagnosed with lupus. And then undiagnosised with lupus. I think the bloodwork that was off could be due to the thyroid and the thing they were seeing on my face – he thought was the lupus rash, but it was jsut barely warm in his office and now that I know my urticaria better, I think it was just the beginnings of my hives coming out. They seem to look different on my face (more blotchy) than the pinpoint hives everywhere else on my body. This “disease” is so weird – and does seem to be part of other things.
I do know my shift in diet has helped a lot – altho not perfect. And it seems to have reared its’ ugly head this last week when I had a virus. I truly hate this thing. GGGRRRRR. I’m sorry you’res has been with you for so long. I pray that mine will be ONLY 7 years… but I fear it will be with me forever. As much as I hate it… it seems almost normal to live in this state of pain and fear.
Which is really sad.