Hi all,
I posted on here back in October/November. I began having cholinergic urticaria symptoms without hives in mid-September 2015. I did not have actual hives, but I did have the awful prickling/itching. This would occur whenever my body temperature rose regardless of whether I was actually engaged in physical activity.
I have 3 kids, all boys, and it was preventing me from doing any time of physical activity with them. Even in chilly weather. I should note that I also developed a strange skin colored rash that looked like goosebumps all over my torso and arms. It is hard to see unless you really look. I went to two dermatologists.
The first misdiagnosed me with a sun rash and then with KP. She recommended I purchased a bunch of creams which did absolutely nothing. She also performed a biopsy on my back and prescribed Xyzol. The biopsy came back as “possible urticaria” which to me, really means inconclusive. I never took the Xyzol as I had read it can give you hallucinations and make you drowsy.
In addition, around this time (early December) my cholinergic urticaria went away (although I still had the rash). I have no idea why. I did try running outdoors a few times and was able to sweat for the first time in weeks on my back and check. Unfortunately, this only lasted 2-3 weeks, as it came back. It did come back to a much lesser degree, but it is still very annoying and I have constant anxiety that it may go back to how it was before, which was debilitating.
I had read Ben’s book and was aware that it was likely to just be a guessing game with my doctors. However, I decided to make an appointment with an allergist. The allergist did not believe I was allergic to anything. But he did order a whole series of blood tests. I saw him last week to go over the results.
All of the tests came back normal except for Vitamin D. He told me that a normal Vitamin D level is “30” and that mine was “23”. He said someone is deficient when there level is “20” or below. I live at the beach and am outdoors quite a bit during the summer, but I am wearing sunscreen etc. which prevents the absorption of Vitamin D. Otherwise, I rarely am as I work long hours in an office and usually leave work after its dark. I started taking Vitamin D supplements last week. I’m hoping it does the trick. I saw a post on here from Hivesguy in 2008 about Vitamin D.
Has anyone else had a similar experience?
Thanks,
Josh
LezLee Bushfield says
I take a hefty Vitamin D supplement daily and still had the CU happen to me. Don’t think that is a possibility – at least in my case. Mine began after 2 bouts with scabies and has improved a lot since the weather has cooled off. Good luck!
Marcia Hildreth McGrath says
My son only has CU in the winter. This year has been the worst. The last 2 years he had virtually none. Before that, for about 10 years, it was just a few times during the coarse of the whole winter. This year, it has been off and on all day, every day, and severe. But it has NEVER happened in the warmer months. In the warmer months, he wakeboards, hikes, bikes, etc, so gets a lot of sunshine. That is the only difference in his life that we can come up with. You’d think if it were allergy related, or anything else, why wouldn’t it be year-round?
John says
First, instead of Vit D pills it would be better to get your Vit. D from the sun…I live in Florida but I never wear sunscreen. I do sunbathe 15 min. on each side whenever I can but not daily…then if you are going to be out on beach a long time you can then put on the screen or cover with clothes etc or try to go to beach at times when the sun is low and not a hazard. The sun exposure seems to correlate with less hivish times, but then summer is always less for me, and this could be because in cold weather we have more stess hormones and other hormonal changes that can be at work. Other than flying to the tropics for the summer I am not sure what to do than accept that it will be a little worse. Of course, the winter problems could be related to holiday foods, dietary indiscretions etc. etc. Few of us are as disciplined as Ben and we suffer for it with each person having varying degrees of hives. If the hives are the usual once or twice daily for 30 minutes type then we can just accept them as very impermanent and try not to fret too much while at the same time being aware of our eating patterns and lifestyle and continue to search for anything to avoid that could help.
Mel says
I posted early Dec about nettle leaf caps curing my hives ( many years ago), Recently the hives have reappeared and taking the nettles hasnt eradicated. When I started taking vitamin D as well there was a noticeable improvement. I’m still taking both and have almost no symptoms and when I do I take a homeopathic remedy ( Hylands Hives) which has them quickly fading. My hives are not caused by heat or exercise but something digestive?? as only come on after evening meal ( not breakfast or lunch??).