Newbie to this forum, and to lupus.

Hi I'm Zoë,

I've just joined this site :) - So after 16 years of problems, it seems I am close to gettting a diagnosis of lupus. Until a few weeks ago, I had never even heard of it (apart from the odd episode of 'house' but never paid attention. Ha) I've been reading a lot about it, and everything just seems to make sense now. I'm feeling really scared, but also a sense of relief. Every time I get poorly, I get worse and have new symptoms. This week I have the rash on my face for the first time, my scalp and ears feel like they are sunburnt, my legs and hands have swelled up with a nice rash to go with the swelling, and my wrist and ankle joints are very sore and stiff. I'm a single mum of two, a full-time university student, and volunteer worker. There's still so much I need to learn about lupus. Has anyone got on advice on how to simply manage day-to-day life without making themselves poorly?

6 Replies

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  • Hello Zoe & welcome 👋👋👋👋

    Am glad you're here. This forum is exceptionally good...more than just an excellent source of sound information, it's also full of really kind, considerate friendly people. Lupus usually means we have lots of multisystem issues, so we also tend to spend time on forums dedicated to our collection of secondary diagnoses. Which means everyone here brings their own special, broad perspective to discussions here. As a result, in 6 years, I've never asked a question that didn't get great replies

    Your question is a big one...I guess "lifestyle management" is the simplest answer....no matter how much my daily prescription meds are helping, I still am conscientiously lifestyle managing my conditions: pacing activities, getting plenty of rest, exercising enough, watching what I eat & drink, protecting myself from light, heat & cold etc etc. The Lupus UK website has really good info on lifestyle management...here is a link to publications you can download: I read all of these when my diagnostic process began 6 years ago...I've reread them several times over the years...the more I understand about lupus generally & my version of lupus in particular, the more straight forward it's become to manage day-to-day life while helping myself to be as well as poss

    lupusuk.org.uk/publications/

    I'm sure you'll get great replies

    Take care...you've a lot on your plate at the mo....but, now you've got the health system acknowledging the nature of your immune dysfunction + working with you to establish an effective treatment plan + you've found Lupus UK, I'm sure you'll get the hang of life with lupus

    🍀🍀🍀🍀 coco

  • Hi Zoe. Im glad you've found this forum, it's a really great source of support and information. I too remember being diagnosed with lupus which I had literally never heard of. My husband googled it and was shocked to his socks but the reality is that if your lifestyle is sensible, your goals are realistic and when your treatment plan is effective, it can all be very manageable. Over time, you will learn what triggers your flares - for me it is vaccinations/injections, stress, sunshine and certain medications. How old are your children - are they old enough to help you yet? It can be very hard 'being there' for other people when you hardly feel well enough to look after yourself but being up and moving is therapeutic in itself - it reduces stiffness and improves mood. Fresh air, for me, is hugely beneficial and I make sure I get as much as possible every day. Building a good relationship with your GP and rheumatology nurse will help you feel less alone - I rely heavily on mine. Don't feel scared - it's not a dreadful diagnosis but it does take some managing. I have had it for over 25 years - I can't remember life without lupus!

    Take care, Clare x

  • Thank you Barnclown and Clareb67. This site has been so helpful, and already feel prepared and I will be a little bit clued up to terms that the Rheumatologist might mention to me. I have a fantastic doctor, so now I request him whenever I need to go. It's mad how after all these years of different problems, he's been the only one ever to link them up.

    My children are three and seven so they are not so understanding, but this is as new for them as for me. I guess after time it will be easier for them to understand.

    The links to the publications you have given me have been a great help.

    There's mixed messages when reading around in regards to diet. I tend to eat generally healthy as it is, but does anyone find cutting down carbs for example helps?

    Thank you. :)

  • Hi Giorgi

    Welcome to the forum, glad you've found it helpful already!. You've had two brilliant replies from Clareb and Barnvlown which I completely agree with and can't add to. I can reply to your carbs question as I have cut them down to lose weight and it has helped despite taking steroids. You sound like a very busy lady so it's tough to suddenly become ill and trying to get treatment and help!. Are you waiting for a Rheumy referral?. Has your GP run the usual blood tests?. Your doing all the right things learning as much as you can about the illness, but don't assume it's lupus until you've had the right tests. There are other immune illnesses with similar symptoms. As someone whose diagnosis journey hasn't been easy , your certainly not alone and I hope you'll keep us posted as to how you get on. X

  • Misty has made a very good point in that you can think the lupus diagnosis is in the bag only to have it changed or retracted at any point. Mine was immediate but most are not and my current Rheumy did try to query it a few years ago - unsuccessfully, I'm relieved to say.

    Paul Howard has done a poll this month on people's dietary experiences & recommendations which you may find helpful xx

  • Hi Zoe,

    Welcome to the LUPUS UK HealthUnlocked Community.

    Have you had blood tests done for lupus yet? If you need more information about how lupus is diagnosed and the blood tests used, you can find it in our free pack which you can request or download at lupusuk.org.uk/request-info....

    We publish a variety of lupus factsheets ranging from ‘Lupus: The Skin and Hair’ to ‘Lupus: The Joints and Muscles’ which you can download via the link: lupusuk.org.uk/publications/

    We also regularly publish articles on our blog which cover various topics and include loads of great self-management tips. You can read them at lupusuk.org.uk/category/blog/

    Wishing you the best of luck, let us know how you get on.

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