LUPUS UK
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I've been just told I have lupus

Hi all I have just been told I have lupus I am new at this still learning I get rashes that come and go and omg I can sweat I'm also very tried all the time I feel ok in the morning but by afternoon all I do is want to sleep. Any input

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Hi Suzieq0571,

Welcome to our community forum. I hope that you find it a great place to share as well as receive support and learn more about lupus.

Do you find that there is anything that causes your rashes to flare up? Exposure to UV, stress and tiredness are quite common triggers for people with lupus.

Fatigue/tiredness is one of the most common symptoms of lupus and often described as one of the most debilitating. We have an article about managing fatigue on our blog which you may find helpful - lupusuk.org.uk/managing-fat...

If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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Hello Suzie 👋👋👋👋

Welcome! Glad you found us...this wonderful Lupus UK forum has made all the diff to me after my diagnosis 5 years ago...and I'm not the only one.

Paul's links are full of really good explanations & advice re the symptoms you're experiencing.

Now you're diagnosed, you & your lupus clinic will begin to get to know your version of lupus and which meds can help most.

Do you have an appointment fixed with your consultant? I hope so

🍀🍀🍀🍀 coco

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Thank you I have an appointment this coming Monday

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I have a question how do i get my boyfriend to understand this whole thing about lupus?

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This link takes you to advice about explaining lupus to family & friends on the Lupus UK website:

lupusuk.org.uk/family-and-f...

And on the Lupus UK website there are great info leaflets you can download...one may be especially helpful to you & your boyfriend : 'my lupus, what you need to know', so this link takes you to the Lupus UK publications section where you can download this leaflet:

lupusuk.org.uk/publications/

It's really good you have this appointment on Monday. Here is a link to a great recent discussion on forum with helpful links re preparing for appointments:

healthunlocked.com/lupusuk/...

Hoping you'll let us know how things go on Monday

🍀🍀🍀🍀 coco

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Thanks I will I just want feel better .

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Treatment really can help you feel better, Suzie...try to talk openly with your consultant about your hopes...and come share with us when you can

🍀😘

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Hi !

Welcome and sorry you have this illness but at least with a diagnosis you can get on the first step of dealing with it.

Do have a look at the Lupus linksPaul replied to you plus read through / search this forum for previous posts as most of us have been through or experienced a lot of what you will be dealing with and have learned a great deal from each other.

Have a look at "the spoons theory" by googling it .Always a good way to explain the fatigue side of things.

Also Lupus UK do a whole host of leaflets/downloads regarding most aspects of Lupus which are not only good for you to read but a great tool for showing to those around you for them to understand .

Here's hoping your upcoming appointment brings extra help to you .

Come back here to ask anything,cry,laugh,moan,rant or just to share ,

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Well dont feel to bad I jus found out myself I been notice n hw tried n painful my joints was but was taken pain killers didnt no dat it was lupus am so afraid

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I was told for three year's it was fibromyalgia then when white blood came back abnormal now it's lupus. I've had joint pain also. I wish everything be ok .it us very scary.

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