LUPUS UK
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Lupus diagnosis

Hi, I don't have any questions but just wanted to share with you my experience with Lupus. I got diagnosed with SLE on March 2017, i was 40 years old then. I did not have severe symptoms, most of my tests were negative other then my ANA test and Complement 3 (C3). The rheumatologist described Plaquenil 400 mg per day and I'm on it till now. I have to tell you that at the beginning of my diagnosis i was terrified, so depressed and couldn't accept it at all. I had to go to psychiatrist cause I was sleepless for days, not eating well at all and all i was doing was googling lupus and reading symptoms. I took an anti-depressant for 5 months then i stopped it gradually. Now i have to say that i am accepting my illness much better and dealing with it. My advice for you specially the newly diagnosed is that Stress and depression will only make it worse. All you need to do is take your medication, have faith, listen to your body, take a rest whenever you can, don't feel guilty and don't stress yourself with loads of work. Just do a priority list and stuck to it, other then that nothing is more important then YOU. Have a good day, stay positive, stay strong and you will conquer anything 💪

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You've hit the nail on the head there Douny , I think when we first get diagnosed it's like a hammer blow and takes time to accept, but as you say we adjust and now having had RA for nearly 4 years I've come to understand that we have to pace ourselfs and I don't let RA rule my life, I put it to the back off my mind and get on with life

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Thank you for sharing. I went through a similar experience of 'googling' everything I could about lupus following my diagnosis. My husband even threatened to disconnect the internet. Luckily a coworker, that also has lupus, helped pull me out of that tough time by telling me two things. First, you can't waste time worrying about things that haven't happened to you yet and second, you will have bad days but that doesn't mean you have a bad life. I have found that making the decision to keep living my life and leaving lupus in the background has helped me tremendously.

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That sounds like me too!

I was diagnosed June 2017 at 42 and I accepted I had it but not the limitations it brings - after years of whinging on holiday about walking up hills now I can’t I actually miss it. Am still struggling with diet, meds and the work/life/lupus balance but hopefully getting there

The most damn stressful thing is the appointment person at our rheumatology dept - well don’t start me on that I’ll be typing all night 🤬

I’m getting there now and friends work and Hubbie have all been great, but if I had a £1 for every time someone told me I look (a) crap or (b) fine I could retire 🙈happily and to somewhere mild

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I LOVE this post!! I'm just going through symptoms and diagnosis and I'm feeling angry that I've been robbed of my energy just as I've taken early retirement from an all consuming, stressful (but enjoyable) job. I need my energy back to enjoy the fruits of my labours. I don't want to be collapsing on the bed all tired and whinge!

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I understand your feelings exactly, I have lived with SLE for 20 plus years, I take each day as it comes, somtimes it is hard to keep upbeat, but I try to keep a positive attitude

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