Autoimmune Hives (Urticaria)

I understand!!! This is my second year in a row getting all over hives. No changes in lifestyle. Both times it happened in November and lasted for a week or two. Both times it started on my elbows and eventually moved to all of my joints (wrists, knuckles, knees, ankles), behind my ears, and eventually to my palms, the back of my hands, tops of my thighs and upper arms. Never any hives on my torso (belly, chest, or back). Both times when the hives start to subside I get some soreness and stiffness in front of my heel on the bottom of my feet and in a few fingers. Please let me know if you get any answers!

I get weird hives, we've never been able to figure out the cause, except they're worse when I get really hot (summertime, showers, etc) and they do concentrate on my feet, knees, and hands. The only thing I've found to help is make sure all of my soaps, detergents, etc (except shampoo, simply because I cant find one that works easily) are all hypoallergenic/perfume and dye free. I still get them when I get really hot, but they arent all over anymore and usually arent as bad. The worst they ever were I was so red my mom said the only thing white on me was my eyes (and I'm usually the palest girl around).

Good luck finding something that works!

OK. Three cases.

Mine was chronic urticaria. 8 years of it. First it was caused by saccharin. Then aspartame, then it was just constant and we couldn't figure it out. 8 years it was partially suppressed by a combination of Singulair in the morning and Zyrtec in the evenings (I was under the care of a doctor). It was only after we found out about my children, that I learned what was causing mine - I had food sensitivities to gluten, cow dairy, eggs, and to a smaller extent, soy.

My younger daughter, on the other hand had cholinergic urticaria - a completely different type of hives, but also brain symptoms (see http://www.ItsNotMental.com ) and was even on heavy-duty psych meds for most of her childhood. Her hives and allergies and later on asthma as well were partially suppressed with 4 meds - Singulair and BOTH Zyrtec and Allegra, plus an emergency inhaler. COLD helped subdue her outbreaks of her type of hives, and any increase in body temperature caused worsening.
Again - food allergies/sensitivities were problematic for her and she was found to have a problem with gluten (Celiac), cow casein, egg whites, soy. She turned out to be severely not absorbing some nutrients.

I was upset with our allergist who was NOT the one who found this. He had only given an IgE allergy testing. Had never told us about IgG and IgA testing, or even a suggestion to try gluten-free to see if that helps. Gluten intolerance is increasing globally.

Third case is my niece. Hers was simple. She was allergic to the laundry detergent and we switched back to the hypoallergenic kind used for babies (like Dreft).

Lookup "urticaria and secondary adrenal insufficiency". and "urticaria and thyroid".

It is no accident that steriods made them better for a bit. It is most likely the fact that your adrenal hormone cortisol is low- that you get them. Drug compaines make man made cortisol (steriods) for those whose body doesnt produce enough. hydrocortisone is the best form.. A really potent man made cortisol is called prednwsone . Do your research.

All the things you are doing are treating the symptoms - sometimes successfully, sometimes not. It's not curing anything.

I've worked with quite a few people with various autoimmune diseases who have had phenomenal results by strengthening their immune systems. While it may not "cure" the disease, it can reduce or eliminate the symptoms or at least their severity, and not have you taking medications to which you are sensitive. If you are interested in talking more about this, let me know. You've been waiting for 20 years -- maybe a 20 minute phone call would be worth your time. I can connect you with other autoimmune sufferers and have you get their experience.

I wish I could help you because I do the same thing you do, each and every year and I don't know when it will hit. I break out only when I am on the road, staying in motels. I have never had the hives begin at home. I have been unable to put my finger on what triggers them but I think it may have something to do with detergents motels use in washing their sheets and pillow cases. I always break out in my sleep. I have a real problem with the facial swelling, especially in and around my eyes. The itching and hives on legs and arms I can deal with with Benydril or prescribed antihistamines. I have had problems in different towns in the motels I stay in from Hamptons to Days Inns and other chain motels. I am going to find out the next time it happens what the motel uses and trace them in the next two years.