For the love of God Kevscar I am so sorry! Is there nowhere safe? Is there anything to be done for this? An antihistamine 30 minutes before showering perhaps?

You must feel so frustrated and I imagine somewhat betrayed. Sorry you are having to deal with this additional problem.

Sending Healing Love, Littlepaw

No there is no cure means no more showers and I can't go in the pool we've just erected

Oh my Kevin, I'm so sorry your going through this!!! wow I cannot imagine. What do the doctors say? Do they even know much about this? Have they suggested any kind of emulsion cream to help so you can take a shower?

Sending healing prayers and hugs

so sorry...keep up the fight as best as you can....

Doctors know even less about this than they do about CRPS so nothing can be done

What a hiccup...in other words damn it! Is there ANYTHING you can put on the skin? I know this sounds silly but it might open a dialogue of something that you can do...

I use....snail goop...there I said it; it's the only thing I can tolerate on my face. Sadly it's was a trial and error...I can't even use the scar creams without my skin being at me...so I just wanted to Keep up the fight and know you have people who care....

Hi Kevscar,
I found some abstracts in PubMed that may be helpful to you. I just used the search term - Aquagenic Urticaria - . It really might be helpful for you to check them out.

Some were regarding antihistamines and one other I found mentioned using a barrier cream. Yet another mentioned that it could be made worse by heat or cold. Also mentioned was Aquagenic pruritis as differential diagnosis.

Anyway, I just wanted to mention this, so don't give up searching for treatments.

Just wanted to say hey, and see how you were doing? Any new news? Have been able to find out anything that will help, might let you at least get in shower? Hope somebody knows something and can help you SOON!!

I have another thought.... This reaction may not be due to histamine, but bradykinin instead.

Bradykinin is another biogenic amine that is released by various triggers. Usually physical ones.

It can build up in the body in people using ACE inhibitors for blood pressure. So Kev...if you are using a drug like this, you need to talk to your doctor to get another family of medications for any blood pressure treatments.

Some people have a hereditary genetic error in the metabolism of bradykinin. (This was discovered for me, when I had a huge reaction to Lisinopril for blood pressure). You can swell, turn red, and hurt tremendously. This is tested for with blood tests for Complement #4 and C-inhibitor.

The blow to your leg, is enough to release the bradykinin from cells and the red swollen appearance is typical. People with this problem also react severely to stings and bug bites.

Many doctors are unaware of hereditary angioedema...and so many people go without a diagnosis. This type of angioedema does not respond to antihistamines. That would be a clue that yours might be due to bradykinin.

Here are some links:
http://www.haea.org/patients/what-is-hae/

You can see from some of the photos, that the swelling can look very like some RSD...

I have had my left hand swell up for weeks, following an IV for a test.
Also I typically get mine in the abdomen and that is called GI angioedema. I was hospitalized once for 10 days with an attack in the 1970's....back then all the doctors were stumped, and I narrowly avoided surgery then. (they found twisted intestines though, saying I had those from birth). Sometimes I get it in my throat, but I have never totally closed up there yet.(thank goodness).

Hello Kevscar,

I am so sorry to hear this and to see those pictures. It may sound silly, but have you tried using purified, distilled water to see if it had the same effect? I am just wondering, if there is ANY possibility, that the impurities and additives to most water could be causing this? In other words, is it possible that this is a reaction to the H2O itself, or the chemicals that are present in water?
It may be a long shot, but can you try a purified, distilled bottle of water to see if your legs can tolerate that? Maybe you have already tried this, it is just a suggestion. It would be nice if distilled water was ok for you. Please do let us know. You are not alone.

Kind regards,
Morgan