I've been just told I have lupus : Hi all I have... - LUPUS UK

LUPUS UK

31,569 members27,966 posts

I've been just told I have lupus

Suzieq0571 profile image
10 Replies

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

Written by
Suzieq0571 profile image
Suzieq0571
To view profiles and participate in discussions please or .
Read more about...
10 Replies
Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

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...

Barnclown profile image
Barnclown

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

Suzieq0571 profile image
Suzieq0571 in reply to Barnclown

Thank you I have an appointment this coming Monday

Suzieq0571 profile image
Suzieq0571 in reply to Suzieq0571

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

Barnclown profile image
Barnclown in reply to Suzieq0571

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

Suzieq0571 profile image
Suzieq0571 in reply to Barnclown

Thanks I will I just want feel better .

Barnclown profile image
Barnclown in reply to Suzieq0571

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

🍀😘

littleeffie profile image
littleeffie

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 ,

Cola2424love profile image
Cola2424love

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

Suzieq0571 profile image
Suzieq0571

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.

You may also like...

hi to all just been told i have lupus antigen sle

in this illness at the moment my mind is all over the place any help or advise out there ...tracey

Just been told what I have is lupus and maybe more autoimmune things

neurologist and get lung test as very breathless .I also have Raynauds in my arms all my face...

Just been told that I have tested positive to S.L.E.

Off lately I am getting very dry lips and I do feel very tired and exhausted all the time. Don't...

I have just been diagnosed with SLE Lupus.

I'm 19 and I'm finding it hard to cope with.. And I has blood test that is showing protein in my...

I have recently been diagnosed with SLE Lupus

have been having problems sleeping, even though I feel extremely tired I just can't seem to fall...