Currently going through diagnosis: Hey folks, i was... - LUPUS UK

LUPUS UK

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Currently going through diagnosis

starwalker profile image
8 Replies

Hey folks, i was told 2 weeks ago that i was to stay out of the sun at all costs and that i may have an auto immune disease known to all of you as Lupus. I had never heard of it and to be honest it was all a shock to the system, i had rashes all over my body in various shapes and sizes for the past 2 years, after appointments every few months with no success of clearing up my skin i stumbled upon my current GP four months ago and since then he has really tried to get to the bottom of this. I see the dermatologist tomorrow but all my bloodworks and symptoms indicate SLE. Nice to meet you.

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starwalker profile image
starwalker
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8 Replies
pattismith profile image
pattismith

Welcome aboard, brilliant site for help and advice :)

starwalker profile image
starwalker

Thank you pattismith, glad to be here, kind of ;)

Purpletop profile image
Purpletop

You are lucky with having a dedicated GP such as yours! Diagnosis is the first step - try not to panic and spend some time reading about the illness, whether on the forum or otherwise.

Just remember that each person is unique in the severity of his/her lupus, the symptoms, how the medication works, etc - so take everything with a pinch of salt because no one knows what causes this disease and there is no cure, only management of symptoms.

You will find a wealth of information here, try looking under tags for an overview of issues.

And welcome, you're not alone.

starwalker profile image
starwalker in reply to Purpletop

Thanks purpletop, i did panic at first as i was scared, i had went from being reasonably healthy to all of a sudden being told that i may have Lupus, i was putting the aches, pains and tiredness down to becoming a dad for the first time, i am the main carer of our son and work 22 hours a week which usually works out closer to 30, well i did until 3 weeks ago until signed off because of the unusual rash on my face that was not responding to antibiotics. I also have other rashes over various parts of my body some have been there for almost 2 years now, but the face got all the doc's attention, he quickly hooked me up with derm and rheumy specialists (as of yet i have got to see) first appointment tomorrow. Now though, i have not been working, the tiredness has never gone away, i will feel fine one minute then after playing around with our son or doing housework and the likes i drain very very fast, get chest pains and i just stop everything i am doing. I have always suffered from severe migraines and have had various un diagnosed conditions all my life but never put it all together until now. Sound familiar anyone ?

pretty similar with regards to the sudden loss of energy and chest pains. I too put it all together after diagnosis and started to realise it was all probably rekated to the Lupus. Sorry to hear that you've become unwell but welcome to the gang...you'll be looked after here.

It really helps to get things of your chest here, I've posted some things that I wouldn't have usually worried anyone about and then been really glad I've mentioned it as I've then gone on to learn loads because of all the input you get! :)

sorry, long sentance...my grammar is non-existant when I'm tired lol!

Hi i too am new on here and recently been told to have lupus. Its hard work when you have young children and you are tired and feeling generally unwell. One minute you are healthy and next you are so ill. Im finding this site very good and supportive. I think you will do too.

starwalker profile image
starwalker

Just back from derm specialist, she dismissed all my blood, urine tests and other symptoms and said i had eczema that i could go out in the sun and it wouldn't be a problem, the nurse put some creams on me, gave me bandages and i have to go back next tuesday so they can have a look, i went out for a walk with my little one to test her theory and my face has already started weeping and the yellow crust has reappeared after a week without it. I am to go about my business as she said it was definitely not lupus, no biopsy no blood test, she took a swab of my leg though. This was after being told last friday that i most likely had inflammation around my kidneys and heart and to stay out of the sun at all costs. so confused, but at least i am seeing people i suppose.

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