Help newly diagnosed and feel so sick! 😢

[MissFG]

I'm obviously having a flare right now of both lupus and hypothyroidism and feel so sick. Not sure what I should do? My anxiety is sky high as I'm so down from feeling sick. I can't ever see myself feeling any better or leading a normal life again and it scares me. If I go to my GP is there anything he can do to help I don't think so?!

I keep getting thyroiditis but my Endo can't do anything as I'm on all the drugs he can prescribe and after starting on T3 in January my levels are now optimal. I'm on hydroxy but I know it takes time to work. But I don't think I can continue feeling so ill. I'm struggling doing anything and actually don't want to as I haven't got the energy.

I've appointments for lung tests and echocardiogram which worry me too. I feel like I'm trapped in a vicious circle of symptoms anxiety and seeing my health decline over the last 14 months.

I've just got help to fill out my pip forms which I've been avoiding. To see what my life has come to in writing is just so sad. Is this all I have to look forward to? How and will I ever feel better? 😢

[Tripitaka]

So sorry you are feeling so unwell at the moment. Life can seem overwhelming with illness, especially in a flare. Anxiety doesn't help matters, or health. I am wondering if you are able to just move out of your routine for a bit. Time to have a break from the mundane of being unwell. There must be something you are still able to enjoy doing, even if you don't feel like it, try and give it a go. Life does change, and it will change for you....there will be better days....

Take care

TTxx

[MissFG in reply to Tripitaka]

Yes your right! I'm planning a holiday very soon I think a break is just what I need x

[Sami1982]

What I've realised myself is lupus really does change your whole life. I was diagnosed not long after having my first child, it was a harsh realisation that my life was changing in so many ways I just wasn't prepared for it. Rather than do what must people do (go back to work after 12 months life returns to a familiar routine) I felt like I'd lost everything. I'd moved County so left my job of 3 years plus all my friends. To start a life of just feeling tired and alone. My partner has stood by me but it's made life really hard. I've lost 2 jobs in the past 12 months due to sickness but I dont qualify for PIP (like you I filled out the form but didn't bother attending the interview as I didn't think I could convince someone who didn't know me to see an illness that can't be seen). I try to stay positive by trying to make sure my little one isn't effected but sometimes I just don't see the point. I used to be full of life and always smiling now all I do is mope about feeling tired. This isn't really any help at all but I know exactly how your feeling. The anxiety and depression creep in because all you know is how to be you and when you change to a point where you don't even recognise yourself it's hard. Just take each day at a time is all I can say.

[MissFG in reply to Sami1982]

I do understand exactly how you feel! I just don't know what to expect or how bad I might get. It's just scary and upsetting feeling that my life is on hold.

Please try applying for PIP again! I requested the forms 3 times before. This was my fourth attempt. But I made sure I got help filling the form out and I'll go to the assessment as financially I can't work and really need the help. Plus it's what we're entitled to. So ring up and apply again x

[Paul_Howard Partner LUPUS UK]

Hi MissFG ,

It may be worth telling your GP if you are currently feeling so unwell. They could consider a short course of steroids if they think you may be experiencing a flare?

What brand of hydroxychloroquine are you taking? Quite a lot of people with lupus experience adverse effects like nausea when taking the Quinoric brand and may manage better on the Zentiva brand. Perhaps this is something worth looking in to.

If you are newly diagnosed, it will take time for you to find the treatment regimen that suits you and for it to take full effect. Most people with lupus manage relatively well on treatment and with some adaptations to lifestyle, so you do have things to look forward to.

If you need to speak to anybody, perhaps you might want to go along to a local lupus support group meeting? You can find your nearest group at lupusuk.org.uk/regional-gro...

We also have trained volunteer telephone contacts, so if you would like to chat to one of them, please just let me know whereabouts you are based and I can provide you with details privately.

[MissFG in reply to Paul_Howard]

Thank you Paul that's very kind of you to share this information with me. I'm going to see my gp and ask for some steroids short term. This has been something I've tried to avoid but after 14 months of ongoing health issues I think it maybe a good option.

I'm also on the Zentiva brand but tbh besides having a delicate stomach I've not noticed any other side effects. So I'm going to try to improve my diet and cut out alcohol and coffee and I don't tolerate these well.

I'm also looking at reducing as much stress and anxiety in my life as I can and I also think finding out my local support group would help. Thank you