I have skin lupus but I feel like I have other symptoms too? I have no idea about my condition pls help!

[Paellaqueen]

hi all, I apologise in advance as it’s a long one and also if this comes across as dumb but -

I’ve been diagnosed with lupus for 12 years and I still am none the wiser to my condition than when I got diagnosed. My main symptom is skin rashes that appeared on my foot but I was in my early teens when I got diagnosed and remember feeling extreme fatigue that everyone (including docs) put down to puberty/ being a kid. I’ve struggled with headaches pretty much every day since I was about 15 and now in my 20s I have major gut issues that I’ve been told is ibs. I get flare ups during winter (have been told it’s heat and sun that cause them I.e summer months) and when I am having a flare up I feel like I’m experiencing fatigue and other symptoms along side the rash. Is it all linked ??

I currently see a dermatologist on the NHS and have told her about these symptoms but she tells me I have strictly cutaneous lupus which only effects the skin and all doctors have always found it weird that my rash has never been on my face. Over the years the rash has started appearing in my places on my body other than my foot - knees, elbows, hands and now today my face. I just feel like I’m being gaslit every time I see this dermatologist because I know how I feel and why after 12 years of being diagnosed does it seem like my rash keeps progressing and now quite prominently on my face?! I guess I’m just asking if everything I’m pretty sure I’m feeling (all my symptoms not just the rash) is legit or am I going crazy and it’s just a rash that itches a bit? I never feel justified that my lupus is ‘that bad’ or even bad at all? I think today has tipped me over the edge because it’s never appeared on my face and I’m concerned what that means? I literally have no idea about this condition at all and I think I just want to feel more in control!

If you read until the end thank you very much and sorry for the ramble !!

[Graystar]

I’m not a doctor or dermatologist but too me it sounds all connected. I’ve definitely noticed my symptoms are worse as the years go on, so what I do now, if I feel I’m not being listened to, is literally track anything new or more frequent in a journal and I also take photos of anything visual. This has helped when I see the rheumatologist or my GP. It keeps the appointments short and on track and provides the evidence we need to highlight any changes. I hope my suggestions help you and I really hope your listened to in future xx