Water in shower hurts me

[lynnieb]

I have it on the coldest it'll go, but I still find it feels far too hot. It really burns. Anyone else have this?

[janep37]

Yes. I`ve joined this community on behalf of my son who has had exactly the same problem with the shower. He also has red,painful flushing of the face and hands, which were originally diagnosed as Rosacea. His symptoms are much worse with increased heat but also with increased cold. He finds outdoor temperatures of about 10-15c optimum. I did find some tips about coping with the shower problem which included dabbing dry with a towel and not rubbing, and using simple soaps/shower gels. I met a lady recently at an MPN forum meeting who had the same problem as you with intense itching as well. I undertood from this meeting a small number of people with E.T experience skin burning, flushing and itching but no one knows exactly why. Two ladies at this meeting said that they had stopped showering altogether, realising that we probably all over wash anyway, and they managed with minimal strip washing as required and were much happier for it.

[lynnieb in reply to janep37]

Thanks for that reply. My problem with not showering is I suffer intense hot flushes when my temp shoots up to 38 degrees. I get soaked, so a shower is a necessity. I just have the water as cold as I can tolerate. Everyone else moans if they get in after me as it is so cold!

I too was diagnosed with rosacea, and get flushing on my face. My toes used to burn badly, but aspirin has helped that a lot. I'm also hampered by the fact I have neurofibromatosis-1. Great life, eh? Anyway, I hope your son is ok. Sharing info has been very helpful to me; I hope it is for you two.