An hour's crazed itching after my nightly bath is usual these days. Today, for some reason it's decided to take hold while I am sitting innocently in my chair and the nearest water is in a glass on the sideboard.
It's OK. I know it's this aquagenic thing that is quite common. I've read all the other posts here about this so I don't really need any solutions - unless you've found something magical, of course!
Just posting to distract myself and stop the neighbours calling the police "There's the weird yelping sound coming from next door"....
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whisperit
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it's a combination of cleanliness and the only time I get some physical relaxation and even pleasure (aside from when I eat a family bar of CDM, and that has its own side effects) x
Unfortunately lupus does require you to make some lifestyle changes, as in if sitting in a hot bath gives you a problem, you need to switch to cooler and quicker showers instead and find other ways to relax (yoga, reading a good book etc.)
I've learned to really enjoy a shower and do not soak in hot baths. You can of course make the choice to continue with them, but you pay the price and it is not good overall to do things that trigger lupus flares because you could be doing other internal damage to organs etc by encouraging situations that trigger immune responses. You need to find ways to alleviate stress that don't trigger your disease.
What sort of soap do you use? I finally got Badger onto ultra mild hypoallergenic soap + cooler bathwater...result: his "itchems" have damped down to a more tolerable level. Crohns set him up for this...his version is definitely autoimmune-related. He has had a dreadful time for many years. If i had my way, he'd bathe nightly in diluted emulsiderm emollient only (no soap at all)..but he can't stretch quite that far yet....he puts aveeno moisturiser on after the nightly bathing...he ❤️ Aveeno
Thanks, coco, i do use a minimum of soap and have sometimes bathed without any. It makes no difference. Just got some aveeno on your earlier recommendation x
oh, my tops are always decorated with a dusting of - ahem - snow, so don't apologise. 'm experimenting with aveeno now to see how best to use it. Thanks M x
I'm sure you've heard/ read so many suggestions by now, but i'll just add this one cos i'm not sure it's something most people will have considered- milk. I use milk baths for mild kp (sometimes with a pinch of salt too) and I find them really soothing. I'm not sure how well it will work for your itching cos it's different causes and all, but it softens and soothes my skin pretty well so it might be worth a try (it's sure easy after all). Just a pint of milk in a not too hot bath.
As for general itching relief I always found aloe vera does wonders.
Anyway the main reason I'm here... Big hug and best wishes. x
thanks Bubblemonkey. I imagine it has to be asses' milk a la Cleopatra for the full effect...*claps hands to summon imaginary handmaids, finds they have rebelled and joined Margaret Atwood's insurrection, puts "aloe vera" on shopping list* x
Ouch sounds awful. I can well understand how the bath is a pleasure but what to do about the itching? I don't know what you are using but how about just bathing in coconut oil? I use it to shower and it's fine for cleaning (I also use coconut oil, bicarb and arrowroot for deodorant). I first got it for my daughter who has eczema and it's quite effective for that. Seems to deal with the itchies really well.
There are no doubt lots of potential reasons for this itching but the liver is one consideration.
I've just bought The Sjogren's Book which arrived today. This says that approximately 6% of Sjorgren's patients have autoimmune liver disease. It refers to Primary biliary cirrhosis (PBC). In the early stages patients complain of generalised itching and tiredness. The diagnosis is suspected with these symptoms, abnormal liver function tests and a specific blood test. I hope it's not this and that you're able to resolve soon.
I feel your pain. It stops me sleeping when it's really bad. I've even had itchy finger tips and itchy palms before. Last night, the soles of my feet were itchy! I have to say I don't bath, or only about twice a year when I get chance to really relax and enjoy without the kids disturbing me. I am a shower person. I have had dry itchy skin all of my life. I had eczema and asthma as a child and later migraine, so am atopic. Plus I'm allergic to grass pollen, house dust and dogs. Then there's the lupus. I have found that unless all that is under control, I am itchy. I have scratched various parts of me until I make myself bleed. I am on hydroxy, MMF and mepacrine and 2 antihistamine a day to help allergies and itching. I can still itch until I am sore. I have used aloe vera gel, cetraben, coconut oil etc etc. My latest favs are Aveeno and their oil mist spray stuff - spray it staright on after my shower - I don't dry first - spray first and then pat down. That is good. Nothing really gives 100% relief though. I also have tried to limit my showers. I try not to shower every day. I will generally when I am going out and about, during the school week for example, but at the weekends if I know I am staying in, I'll leave my shower and give my skin a break. I think you can over wash and the natural oils in your skin don't stand a chance. I am always afraid that if I scratch my legs too much, over my varicose veins then I will end up with a nasty infection or ulcer, but I still can't always stop myself. Might seem insignificant to some people, but it can drive you nuts. I hope you find some answer soon. x
It is horrid, isn't it? What makes it worse is that it is the stinging kind of itch - it's impossible to ignore as its so sharp that my leg (or arm or whatever) does a sort of reflex jump if it's ignored.
Thanks for the benefit of your experience - all hard-won, I know! x
I'm trying to copy and paste a picture from the cartoon of Itchy and Scratchy but without success! I don't think I get the stinging. Are all your bloods OK? Have you discussed it with the doctor? These kind of issues usually get pushed down our list of symptoms to discuss as other more pressing issues occur.
you guessed right! no, i haven't mentioned it yet for the very reason that it comes low down on the list of worries, but it's now risen a whole lot nearer the top...x
I don't know of either of these will help but I've been taking Gabapentin on and off for years for pain but in 2016 my new doctor told me to take it (300 mg) for my itching fits that would last for days. It was THE only thing ever to stop my itching. I cried when I realized that it worked. I also switched soaps to Kirks Castile (peppermint and hemp _ blue package). Any Skin issue outside of the Lupus sores are kept at bay.
I know this isn't what you wanted but I read something further down and decided to share what helps me! 😇😀
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