Going insane with itching :-(

Hey again guys. Does anyone else get severe itching for no apparent reason? My scalp is on fire and my eyes, then random spots all over my body. It's driving me insane. But what I have noticed is it seems to get ten times worse when I've been out in the sun. Wonder if it's connected? Anyway, just wanted to rant Becuase I'm sooooo itchy!! Argh!!

17 Replies

  • Finally found someone going through the same problem . I haven't yet been diagnosed with lupus but I'm being sent to a specialist soon .. I tend to get really itchy on my knees , thighs , and arms . I also get hot flashes and of course all the other symptoms like joint pain and stiffness in the morning . Also got a huge headache.. But recently ive been itching bad and when I scratch my skin goes red easily as if it's a rash ..

  • I'm currently on fire. My scalp and face and eyes :-( hope you get a diagnosis soon xx

  • Hate to repeat myself but keep covered up from the sun.

    I wear hat/cap and 50+ sun factor on all over even under clothes as am very affected by Sun plus strip lights etc.Itching,sore,burning then flu like symptoms if not covered up enough.

    If it continues ask your gp about it.

  • Thanks :-) funny you said that Becuase I also have flu like symptoms at the moment. Didn't think it could be connected !

  • Yes, yes and yes. My new glasses started it but I didn't make the connection. I got contacts and it helps. Clobetasol helps also. I have been told that I have lupus... So guessing my immune sys is wacky. Originally diagnosed with psoriasis... A guessing game? Don't scratch. Your hair will fall out from it. Go gently. Allergy pills have helped with the itching. OTC

    Good luck.

  • Thank you x

  • Yes, you must use uv protection clothing & hat for the sun. The sun drives your body crazy.

  • I'm starting to notice that. Which sucks! I used to living Australia and I loved the sun! Good job I'm not still there or I'd probably ove scratched myself to death!

  • Hello.

    I can totally relate to the itching thing. I have posted about it myself before. I have always suffered from dry skin/eczema, allergies & migraine. Is it called Atopic illnesses? But when the lupus kicked off the itching got out of control. I have driven my husband mad with it. It generally occurred at night, when I'm trying to get to sleep. Legs, feet, scalp, palms of my hands, the tips of my fingers etc etc. He would often tell me off for itching as I inevitably made myself bleed. I take 2 antihistamine, due to hay fever - grass pollen, allergies to pet dander and house dust, plus I was told I had varicose eczema at one point, so the Atarax one makes you sleepy - I take it at night, so that it helps me nod off and stop itching.

    I have tried various creams, E45, Cetraben, Palmers Cocoa Butter, Holland & Barrett lotions and aloe Vera gel etc. Aveeno works best for me, at the moment anyway. The itching has eased recently and I think this is because I am getting my lupus under control. So for me, itching only really relieved when illness is under control.

    I have Subacute Cutaneous Lupus (SCLE), which is a sub group of SLE & DLE. So I am sun sensitive, in fact with this type the sun is my worst enemy. So limiting my exposure is crucial. I have 3 children and so I can't hide away inside all of the time, but I have rash vests, sun hats, sun glasses, factor 50+ from the doctor, a UV protection umbrella for the beach & a new parasol for my holiday. I could talk about this for ages, as I've had a real learning curve since my diagnosis 2.5 years ago. Sorry! I hope this is all useful!

    Last summer my feet swelled up and looked so ugly with dry skin. I think the summer has an accumulative effect on my skin and by September my feet have had it.

    The only bits of my body that ever see the light of day are my feet, my hands and my head/face. Factor 50+ sun cream isn't enough protection for me, so I always have trousers and long sleeves on. Factor 50+ on my face all year around. I learnt last year that my feet can't cope with sandals every day, even with sun cream on, so this summer I am alternating between my FitFlop trainers and my sandals. My feet are definitely much better - so far. My Dermy doesn't understand my sadness at being a woman who can't wear pretty sandals every day - men!

    Anyway, if you want to ask anything else, please do. In the meantime, cool shower, slap in the moisturiser and get off to sleep.

    Best wishes


  • Hi Wendy, thanks so much for the detailed reply and advice! I did get some hay fever tablets that were for itching and also some anti allergy eye drops and they helped a lot. I use coconut oil for my skin. It was sucking be stuff up it was so dry! Thanks again, hope your well.

    Stacey X

  • 👣👣👣👣👣👣👣👣👣👣👣👣👣

    Hi Stacieann;

    Try coconut oil? I use coconut oil at least twice daily. Every morning after shower/bath I apply it from top to bottom, I try to stay undressed for at least 30 minutes to let the coconut oil absorbe into the skin. I use it at night also. I do use it during the day if my skin gets dry.

    I don't know if it will help you but, it works for me, and if nothing else it will keep your skin soft. Also coconut oil kills bad bacteria. I can't use deodorant (it will make me itch like crazy) so I use coconut oil under my arms for deodorant, it actually works!

    As Wendy stated I do know what it's like not to be able to wear shoes, sandals, and or flip flops. Due to lupus issues on my right foot, I have had to go barefoot for the last 2 years. (Summer and winter). Everything I do and everywhere I go I have to do it barefoot. And I am a guy.

    I hope you have a good weekend!


  • Hiya! I use

    Coconut oil every day! I'm obsessed with it :-) it does seem to help with the itching. Thanks for the input ! X

  • Hi stacieann1989 I'm reading your post whilst itching the hell out of my scalp and body! I itch all the time but for some reason it always seems worse when I'm in bed!! I totally sympathise 😣

  • Hello stacieann, Right now I am itching ... not sure which part of me is the itchiest! I am trying hard not to scratch or that is me for the night. I have one wee hint , don't rub your moisturiser cream too hard, just 'slap' it on. This has helped me if only for a wee while.

    Oops even thinking of the itching makes me even itchier!! Temptation is not a box of chocs! Oh dear I have just given in to a 'quick scratch'!

    Wishing you an itch free night, very best wishes Pixiewixie

  • Thanks for the reply? It's awful isn't it ! I had a few days break and it's back again today 😱

  • Snap xoxo

  • Hi stacieann1989,

    The sun does trigger symptoms in most people with lupus. You can learn more about this and get advice for coping with light sensitivity in our blog article here - lupusuk.org.uk/coping-with-...

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