Lupus rash? And symptoms

[Drewbedo]

I look awful in the picture! I started with symptoms of possible lupus in September 2023. Extreme fatigue, muscle and joint pain, face rash, dry hair (even my hairdresser commented it had never been like it before), headaches, raynauds. I've had multiple visits to the GP, who thinks I have fibromyalgia/cfs. I had a negative ana blood test. My face rash is now getting worse and I also have painful, swollen stiff fingers. Just after other people's experiences really and advice? I'm utterly miserable at the minute. Not been able to work, hardly leave the house.

[Newsystem23]

My symptoms were very much like yours. My blood tests didn't show lupus but my skin biopsies were positive. I was noticing how red and blotchy my face was after being in the office all day. I've recently found out the my skin is light sensitive. By the way you do not look awful but you probably feel awful. I know I do, when my face starts to burn under the lights in hospitals, dentists, supermarkets. I was told to always use spf 50 plus sunscreen, both in and outdoors. I also use no 7 protect and perfect which is a type of BB cream with spf50. The tint tends to tone down the redness in my cheeks and gives me more confidence to venture out. I hope you get all the right help and my advice would be to ask your gp to refer you to a dermatologist rather than keep prescribing steroid creams. It took two referrals for me to be seen, so don't give up. 👍

[MrsMarigold]

Hi. I agree dermatologist and hopefully referral to rheumatologist. My blood tests did not catch up to my clinical symptoms for years/ I’m in USA. My face today looks like yours. Sometimes it means a flare is coming. Sometimes it just hangs there for several days and then I wake up pale. You don’t look bad like you think. Some things that help me is pure aloe (Amazon) no steroid creams ever. They backfire eventually and make your skin red permanently. I do not understand how dermatologists recommend this awful advice. Eat no sugar. Drink a lot of water. Limit carbohydrates. Despite what the world of beauty throws at us: wash your skin with cool water only. I use a mild cleanser once a month. Use no moisturizer except on dry areas. I mostly use aquaphor. Or another cream mostly based with squalane—non oily cream. If your face burns, you can place an ice pack on for a few minutes at a time. Not all day. Sucking ice helps. My hair is what is called by some, lupus hair. So dry. I’ve just now cut it for the last time very close to my scalp and I slick it back with a gel. I’m ready to wear hairpieces full time. Cutting your own hair is incredibly empowering and it gave me a feeling of control over my disease.

This all being said, you don’t know what your diagnosis is yet. Just please know you are going to be okay. Eat well. Sleep. Silence your worry with the proactive steps: get doctors lined up, call friend or family, if possible, go back to work. Let us know how you get on. Big breath. You will be okay.

[BonnyB]

Hi, I posted a couple of weeks ago re diagnosis , the information on there might help you. I'll put a photo on of the cream dermatologist advised me to get. It's from amazon. It has a tint to help with redness and its lovely on the skin, doesn't feel as heavy as other factor 50's I've tried.Plus a book, that really helped me in the early days to understand what was happening. You can get it off ebay for a few quid.

I hope you get to see a specialist soon.

X

[Howdoi]

hiya I’ve just joined this group and how crazy my symptoms exactly the same face rash but I had some go blistery painful fingers and feet blood negative dr thought fibro I ended up having to go private as waiting list so huge for nhs