Flare up and having a life panic

Hi I'm new to this forum, never wanted to admit to my SLE before (hoped doctors would say they misdiagnosed me), I've been diagnosed for 2 years now (suffering since I was 15.. now 23). This is my second proper relapse since being diagnosed; currently 4 weeks in, (although not as bad as my first thanks to hydroxy...I had a massive flare during my second year of uni resulting in my diagnosis). I've been fine through a pregnancy and now a year on it's all come back so I'm having a little bit of a life panic. My lupus effects my joints mainly my hips, knees, elbows and fingers with muscle pains around those areas too making it very difficult to move/do normal everyday things at the moment. Fatigue, rash, mouth ulcers and hair loss are also there but I have also started to get really breathless, keep getting headaches and getting sporadic stomach pain which is new to me, I'm not sure if it's lupus linked or not, but hate going to the doctors all the time. Being a single mum to a 1 year old, currently not working I have started worrying about the future and how possible it is to work and bring up a family with lupus and what type of work are best suited (I've always been in education before now so basically starting again). If anyone has a similar story/ any advice please share.

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  • Are you having treatment for your flare? Steroids? Are you on any other meds? NSAIDs?

    Don't expect the worst. I should have been diagnosed ten years ago, similar symptoms to you, but some blood results got overlooked and I WAS misdiagnosed, sent away as post viral syndrome! I got slowly better and stayed well until last couple years, now diagnosed MCTD (lupus plus inflammatory Arthritis) so i had a natural remission without meds, I know I was lucky, but lots of people have good remissions, but probably being on the right, and enough treatment helps!

    I completely get the muscle pain, my neck shoulders elbows and wrists are worst affected and during a flare muscles get very weak.

    Are you photosensitive? I get worse in work lighting ( allergic to work!)

    Iam on prednisolone just now, and also on methotrexate and hydroxychloroquine, and best I have been for ages. I am a nurse and still work full-time, with adaptations you can do whatever you like when you have the SLE under control.

    See your GP or rheum nurse about the breathlessness, you could be anaemic or have some lung involvement. Getting control will mean you have to go to doctor less in long run, so its worth the hassle just noew. Where are you based? How often do you see rheumy?

  • Hi SLC03, living with active Lupus or any health condition is unpredictable & scary. The thing that's been getting me thru it is being positive (that things will get better), focusing on that moment rather than the future (less pressure), having faith that my current state is temporary (as Lupus changes forms), meditating (clearing my mind) gentle activities like yoga, walking (when Lupus is not active) & that tomorrow will be a better day. Also, there is a link to Mind, Body & Soul so if one is out of synch, it affects the others. I've had to change my mindset to adapt to living with Lupus & 4 other health conditions. I still haven't returned to work as health has been unstable but I've changed my diet to eat more fruit & veg. I don't have any children so I can't comment on how to cope with that but I guess the 'do what I can, when I can' mantra still applies. I pray that you find peace & for a speedy recovery. Positive blessings to you x

  • Hi. Sorry to hear you're having a tough time. Having an 'invisible' illness can be quite isolating and it can also make it hard to plan the future (or anything actually!). The silver lining for me is that I find I appreciate the small things so much more. I have SLE and Fibromyalgia, anongst other things, and like everyone have good days and bad days. I also have 3 children (4, 6 & 8) and when I'm having a bad day everything is such hard work but on a better day I appreciate all the blessings I have so much more. Eg though my children completely exhaust me and make pacing difficult to do, they are a distraction from myself and keep me going when I might well otherwise spend days in bed which wouldn't do me any favours! Because it's difficult to plan ahead it encourages you to live for the moment; get through the difficult days day at a time and appreciate the present moment without missing it whilst you're planning the future. The 'I love you Mummy' on the back of a scrappy bit of paper, the text from a friend showing they care, the offer of help from a kind stranger.

    I think I got carried away sorry! On a more specific note, it is definitely worth going to see a doctor. I can understand your reluctance, I often feel that way myself, but it's important to check these things out with a professional. Us 'Lupies' are often on several different medications and some suit better than others and a quick change can sort the problem. I have IBS (fairly common addition to Lupus) which is a pain literally but knowing about it helps me manage it better. I put up with breathlessness for a long time but found after talking to my asthma nurse that it could be the aspirin I was on. I'm now off it and am much better.

    Hope some of that is helpful! Please ignore anything that isn't.

    Love Tinksy

  • Love your reply Tinksy.

    Babs x

  • Thank you all for your comments, made me feel a lot better. I'm usually really upbeat and don't let lupus effect me too much just get on with what I can. Just had a particularly miserable day yesterday felt very alone and fed up (after a comment made by a so called friend who doesn't understand).

    I'm currently on hydroxy and etoricoxib (for the inflammation) looks like I need to head back to the doctors again. Might request to go on prednisolone as that was what I was on last time and seemed to help. I saw my rheumatologist just before it got really bad and he wants to see me in 6 months time.

    I'm a planner and used to work towards goals so I know I need adjust my own attitude to a reality of life with lupus and find the right balance (medication included) take each day as it comes. I appreciate all the little things in life already.. just worry way to much about how others view me (I'm working on not caring so much). My sister keeps telling me I should do yoga but I'm one of those who just gets the giggles. I will find something calming for myself though to give me a different focus.

    Thank you all again.

    Xx

  • I struggle with caring too much about what others think too. I think I will be working on that one the rest of my life! I used to find Pilates quite helpful. It helps your core strength but doesn't have quite so many weird positions to hold so maybe easier not to laugh?! I do remember one or two fits of the giggles still but that in itself was quite therapeutic! I think it must be doubly hard if you're a natural planner. I'm not particularly so it's probably easier for me.

    Glad you posted on here when you were having a bad day. I often do the same and it does help knowing there's others out there in a similar situation. None of us can be upbeat all the time. Hang in there and good luck with the doctors. Best wishes xx

  • HI SLC03,

    Welcome to the forum. I'm sorry to hear that you are experiencing another flare at the moment. Have you discussed your new symptoms with your GP/Consultant? Are they advising any changes to your treatment (such as increasing steroids) to help you through the flare?

    If you are considering the future and thinking about work, you may want to read our booklet 'I want to work - a self help guide for people with lupus'. It gives some advice about looking for work when you have lupus and about the support which is available after you start. You can download a digital copy at lupusuk.org.uk/working-with...

  • Hi dear

    I am a single mum had mine 3yrs ago. I was diagnoised in 2011 but started treatment in 2012 when i had a relapse. My son was just 3months when i went on my 1st hospital addmission. I have tried to get back to work but am too uwell

    I am blessed to have my mum to help me. Take care and God bless.

    Ijeasike

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