anyone else get "invisible" butterfly rashes??

i get normal rashes; butterfly, or around my mouther etc, but i wondered how common it is t get the *sensation* of a rash, but no visible symptoms.

i get a noticeable prickling sensation, which is actually stronger than with a visible rash where its often only a faint sensation.

the invisible rash is in the butterfly rash area, but 95% of the time there's nothing to see, 5% of the time its a little pink.

anyone else get this?

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  • This is interesting. I had what seemed like one a couple of days ago. A friend had popped in to see me and I felt that the malar was coming out. I asked her and she couldn't see a thing, so I just applied my cold hands to cool whatever it was. This could be a one off for me - the skin on my face is always super sensitive.

  • thank you.

  • Yes, you describe what I get perfectly.

    I get the visible rash very often; it is usually pink in colour but, I often get the "feeling" of the rash but it cannot be seen at all. I agree that, it is somewhat ironical that it is more irritating when it is invisible. I find it doesn't just tingle, but also burns and itches when it cannot be seen.

    I used to get really self conscious of it, because I was sure I looked like a very embarrassed teenager despite actually being a grandfather!

    During the time I've had SLE, I have learned to expect the unexpected.

  • thanks : )

    im not actually diagnosed, so I'm just trying to figure my way through the maze.

    i googled this repeatedly but nothing came up. its a hot prickling on the top of my cheeks. on my chin, i get what i call hot chilli; as though i've rubbed hot chilli flakes into skin. and yes, that hurts a little sometimes.

    its weird how different it is once you speak to people; the text book definitions are very different. thanks for helping put my mind at rest!

    in the nicest way possible, I'm glad I'm not alone :P

    thank you!

  • I been thinking of your description and wondering if it's like one of my symptoms. I found that my cheeks tingle, no sign of redness, it started in my left hand, then my right and then my cheeks. The rheumy specialist in London said I am more sensitive to uv. then first thought. I am usually covered head to toe, but realised my hands are exposed and I didn't think I needed to wear 50factor on cloudy winter days, got that wrong and wear 50 factor all the time and gloves to cover my hands especially driving this has helped. So that a possibility for you? I should mention I hide from the light as much as possible. ...ml

  • no, it's not from sun exposure. with that, a few days later i get general malaise, aching joints and severe brain fog.

    in fact, anecdotally, i think i've hd the prickling with invisible rash more through winter than in summer, and i have curtains drawn at home anyway.

    i experimented last week by being out in the strong sun last weekend a bit, and then totally forgot. then on thursday was REALLY ill; aching joints, low energy, feeling crap. couldn't work out simple phrases, just really bad brain fog. eventually i remembered i'd been in the sun, ha ha.

    what I'm talking about i've only had on my face, though I'm sure there's nothing to stop it happening elsewhere on the body. it feels like you have a rash, but there's nothing. its in the places i get worst rash; upper cheeks and chin. sometimes the pores will be very open, which is unusual, but that's the only visual evidence of anything happening.

    thanks though : )

  • I was a real mess before the hydroxy, rash that spread face, chest, back, arms and like you flu like symptoms, foggy brain, tiredness, achy joint's until meds kicked in, even now i know I've overdone it when I too tired or can't finish a sentence... It seems UV light can be just as bad in mist and winter that the tricky bit.... Let me know if you get any answers....can feel my cheeks now been indoors all day...ml

  • Yes I do. On both my arms and shoulders. They are like pink patches that show up on my skin. I very often notice them when i am having a bath. And they do prickle to. And sometimes itch. I also get tiny blisters on my hands that itch and burst when I scratched them. I don't know what they are not what causes them but no doubt it's the Lupus again. Sometimes it feels as if there isn't a single part of our body that this bloomin Lupus doesn't attack or affect. My biggest fear of all is if it should ever attack my brain. I already have a terrible memory at the age of 57 and my mind goes completely blank very often when I am talking to somebody due to not being able to remember the word I have needed to use. I guess that's what they call Brain Fog . But it is something I fear having my brain attacked by this disease.

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