New on here: Hello I am new on here. Been having a... - LUPUS UK

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Wrexlu profile image
Wrexlu

Hello I am new on here. Been having a few troublesome symptoms over the last few months. Do any of you suffer with the sun and then what that brings to you? I have had two horrible throat infections, a bleb under my nose and a sore in my nose, sore joints and general tiredness. I have also been suffering with terrible uti and kidney infections for 4 years and the pain is acute going up my back making it feel pleuritic. Am in such a mess so please bear with me. Thank you.

7 Replies

Hi Wrexlu,

Welcome :)

I was diagnosed a couple of weeks ago now, but I’ve suspected lupus for a long time.

When I’ve been in the sun (which isn’t often now as I go out looking like I’m in disguise-hat, glasses, factor 50+ and covered up), I develop the butterfly rash across my nose and both cheeks. I also tend to just generally feel lousy and poorly, quite other worldly if I’m in the sun. Also my eyes feel uncomfortable and this also causes headaches. I have Sjögren’s do eyes get irritated and dry anyway. I have a dry mouth too so plenty of water is essential.

If I have really cocked up and spent too much extended time in the light, this could cause me a big flare up over the next few weeks-this would involve swollen mouth, mouth ulcers, hair loss, joint pain, butterfly rash, hives (usually over my legs), flu like pains in joints and chest, headache, fatigue, foggy head/worsening memory. It’s horrible!

I’ll be honest even when I’m not in full flare I generally still feel quite ropey-I nearly always have mouth sores, fatigue and a headache at the very least.

I’m lucky at the moment as my bloods don’t show any organ damage but I am taking hydroxychloroquine in order to prevent any future damage and reduce flares.

I hope that’s sort of answered your question.

Take care

DJK99 profile image
DJK99 in reply to Serser

I hear you serser... these days I describe the sun as my kryptonite. And it's just not cricket! X

Serser profile image
Serser in reply to DJK99

So true DJK99! My daughter (who incidentally is wolf and vampire mad), calls me her ware-vamp mum due to me always making the house as dark as possible and having lupus! She’s told her friends, so they are all looking forward to coming over for Halloween, I think they may be a little disappointed! It’s all in the perspective I guess!! Lol!!

I hope you are feeling okay st the moment. I never say ‘well’ because I know how it feels to have to explain all the time why you don’t feel 100%, especially when you look okay!

Lovely to meet you :)

DJK99 profile image
DJK99 in reply to Serser

Thanks so much for replying. I've always lived in ;near darkness like a mole too! I never realised why until my diagnosis. I also sleep like a doormouse! And yes the "keep well" bit is a bit er... I ketp saying it on here but frankly it's a case of peeps like us just pushing pushing pushing - with intervals of face down in the carpet for couple of days. Mind you, we're lucky to have not much kidney involvement and all the rest - mind u I have a creatine stuff so keeping an eye like they do on us all - and heart stuff too - AF and leaky aortic valve - It's just congenital from birth. So - may u be as good as you can be on this lovely weekend.., moi aussi with hat, and slathered in the F50! Hug d

Sorry you're not well Wrexlu. I've had nasal problems with sores and dryness, have it under control now but it was a struggle for a while. Fatigue was a problem as well, not as bad since taking meds but some days I could sleep the clock round

As for the sun, I can go for short walks in it but I never sit in it as I burn so easily and I'm left feeling unwell so I avoid that. Nice to sit in warm shade when the suns passed over the house. Hope you're feeling better soon xx

Wrexlu profile image
Wrexlu in reply to chrisj

Thank you for replying

Chanpreet_Walia profile image
Chanpreet_WaliaAdministrator

Hi Wrexlu,

Welcome to the LUPUS UK HealthUnlocked community!

Many people with lupus experience a flare of their symptoms when exposed to sunlight. The most common symptom is for rashes to appear on the skin, affecting areas that are frequently exposed such as the face, neck, hands and feet. Sensitivity to light can also cause lupus patients to develop a migraine, experience nausea or joint pains; joints can become tender to the touch and swollen. We published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...

Oral (mouth) and nasal (nose) ulcers are one of the most common features of lupus occurring in around 45% of people who have SLE. We published a blog article on coping with oral and nasal ulcers which you can read here: lupusuk.org.uk/coping-with-...

We published a booklet on lupus and the kidneys which I hope you will find useful: lupusuk.org.uk/wp-content/u...

To read our blog article on ‘managing fatigue’, click here lupusuk.org.uk/managing-fat...

Please keep us updated, wishing you all the best.

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