Just been diagnosed

Hi All,

I have just (19th Dec) been diagnosed with Lupus (SLE specifically) and I am finding it hard to digest and come to terms with it. I just wanted to get some support with dealing with questions and concerns with family members and work when you first tell them that you have it.

Also I have a sense of feeling of not trusting my body, for example not being confident to hold things because my fingers are really inflamed and painful at times. i have experiencing hair loss, blurred vision and blood shot eyes, feeling really hot (burning) in random places on my body. (does any one else get these?) and also afraid of things getting worse.

How do you guys manage this, and deal with symptoms? Is there anything I should look out for.

Many Thanks :)

13 Replies

  • Hello Mrs TMP

    I was diagnosed just over a year ago and this site has been incredibly helpful. It's such a relief to find other people in the same situation. There are a lot of weird symptoms of SLE but I have not had that burning although I had unbearable itching on my arms and legs ...

    It is a tough journey but there is a lot of support and understanding here x

  • thank you for getting back to me, i really appreciate that.

  • We understand the difficulties in taking in the news. It was hard for me too when i first found out 4 months ago. I however have SLE with overlapping diseases (RA & MCTD). If the doctor hasnt already they would most likely give you meds like Pred to help with the inflammation in your fingers and joints. Hair loss unfortunately i heard is also common and im also experiencing that too.

    Things would feel better as long as you take your meds and stay positive. Posts and forums like these have helped me alot. Family and friends have also helped. Finding someone who also has Lupus so you can talk to them about your symptoms help too. Unfortunately, i havent told my job cause i got diagnosed when i got hired. But if you have a good relationship with your manager or supervisor you should be able talk to them. Its important to let them know just in case a Flare arises and you cant go into work.

    Cant promise that there would be days you get bad or worst. I fortunately have mini flares that only last hours or just the day. I have a friend that it last for weeks. I dont get warning signs before my flares. However, I try to stay postive everyday so i can get thru the day. Try to do as many normals activities as you can. Exercising is ok when your joints get better it also helps. Try to not over do it. Know your limits.

    Stay on this forums they help alot. We all understand. 😊

  • thanks for getting back to me,

    my manager is really supportive and understanding so that really helps, and my family have been also

  • Hello. I was diagnosed with Lupus 15 years ago and it was a shock. At the time I didn't know what Lupus was. Lupus UK and the local support groups across the U.K. have been an amazing support. I would recommend checking with lupus Uk where your nearest group is to attend the next meeting.

    I find it useful to keep a Lupus diary detailing daily or weekly symptoms and flare ups so I can discuss my progress with my consultant at the next appointment.

    Talking to family and friends about my symptoms also helps too. There are many contacts with Lupus UK who are always able to talk by phone.

    Stay positive and together we will all support each other

    Best wishes

  • hiya

    thanks for the advice I am defo going to keep track of it with the journal and i will look into the local help groups aswell

  • If asked what Lupus is. I just say "An autoimmune disorder where my body does not recognise the difference between 'self' & 'other' & can attack any organs/systems in my body" Good luck it's all pretty tricky at first & takes a while to get your own mind around the new life before you. Kaz x

  • thank you that was really helpful, i think its defo just about me getting my head around it xx

  • Hi there just behind you diagnosed early Nov and yes I get hot tingling and chronic hot flushes. GP today saying could be steroids. Stay positive and I sent my HR the leaflet on employer dealing with Staff that have Lupus which I believe helps them understand our condition...good reading for us too.

  • thank you for that. I may find that and give it a read also. I will speak with my Doc tomorrow about it.

  • You will be able to get that leaflet and others from here if you contact Paul the administrator . What medication have you been put on for your lupus ? It does take several months for the medication to take effect and you may find that they will change medication sometimes to try to find the right medication or combination of medicine which works best for you , everyone is different what works for one person may not work for others , eventually they will hopefully be able to stabilise your condition , you will still have flares from time to time though that's the nature of the disease unfortunately but the medication will help you . The most common is plaquenil and steroids , if you have organ involvement you will probably be put on an immunosuppressant drug aswell , these drugs suppress your immune system to try to stop it attacking your body because lupus is a disease were your immune system starts to attack healthy cells in your body . It is scary at first finding this community early will help you , I have had lupus for 15 years and only found this community a few months ago , I have discovered more about lupus on here than from anywhere else and a lot of it has been so helpful . Ask as many questions as you like no matter how minor you think it might be , you will always get help and advice from here . Keep in touch with us and let us know how you are getting on x

  • The burning sensation seems fairly common. I get it randomly at varying levels of discomfort. From feeling like I've been scalded to having actual stabbing pain in the area. One aspect of Lupus is that you are always wondering if what you experience is Lupus linked or not. Kelpie21 mentioned hot flushes. I just had that and assumed it was a change to my usual method of hormone delivery - from pill to patch. Now I'm wondering.... also coincided with a flare. Is there a link? Seeing my consultant tomorrow so might just mention the hormone thing now. Thanks all!

  • Hi MsTMP,

    Welcome to the site, I hope you find it a useful source of support and information.

    If you want more information about lupus for yourself and to help your family understand the condition, you can request or download one of our free packs at lupusuk.org.uk/request-info...

    We also have a few short animated videos which can be helpful for explaining the basics of the disease;

    We have a series of blog articles which have loads of information and advice about coping with various symptoms such as fatigue, brain fog and hair loss. You can find them at lupusuk.org.uk/category/blog/

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