Aquagenic Pru-what-us?

I'm about to sound crazy.  I used to think I was.  Now I know that I have something called Aquagenic Pruritus.  I'm sure you've never heard of it.  It is rare and not fully understood.  So, what is it?  It's a skin problem that is triggered by water.  It's almost like an allergic reaction.  How ridiculous is that?!

For as long as I can remember, I've gotten itchy after bathing, swimming, or otherwise getting wet.  It isn't every single time and the severity varies from time to time.  The word "itching" doesn't really cover it, though.  It's really intense and prickly and the sensation can last over an hour.  Some people describe it as bugs crawling under the skin.  I think of it as the worst "pins and needles" sensation ever.  The prickling is mainly on my legs but sometimes on my arms, as well. There is no visible issue--no bumps, hives, etc.  Scratching helps for a moment but then I feel like scratching my skin off.  Lotion doesn't help because it's not dry skin.  It is intense to the point of distraction and tears.  It's frustrating.

A few years ago I was suffering from a particularly bad bout of it and decided to Google it, on the off chance that I wasn't alone.  Sure enough, my search for "itching after showering" returned thousands of results.  That's when I found the term aquagenic pruritus and accompanying information.  I found support groups full of people who suffer with it to the point of avoiding bathing altogether.  I was amazed!  Not only was I not crazy, I wasn't alone, either!

That's when I started looking for treatment options, which is when the bad news came up.  There are ideas and suggestions but no "cure" or guaranteed treatment.  Antihistamines and antidepressants can help some people, and I certainly get relief from mine.  When I started taking both daily was when my symptoms lessened.  Some people get relief from certain water temperatures but I haven't noticed that for myself.  I seem to do better if I bathe at night or if I drink water before my morning shower.  None of that is full-proof but it's better than without.

Obi-John, God bless him, didn't bat an eyelash when I mentioned my search results to him.  He had seen me curled up in the fetal position, scratching, and in tears so he knew what I was experiencing.  Then I got brave enough to mention it to my primary care doctor, expecting doubt from her.  Instead, she knew about it and listened to me.  She didn't have any suggestions but appreciated hearing what works for me so that she could pass along ideas to other patients who are suffering.

I don't know if any of you have these symptoms--I've always been nervous about sharing my symptoms with others since it sounds crazy--but I hope knowing that you're not alone helps.  Gentle hugs!