I have been diagnosed with tumid lupus with possible SLE. I haven’t been investigated for that and haven’t been seen my rheumatologist yet. I was just wondering what a flare feels like to other people and what to do?
I feel so horrendous today, my heart feels like it’s going to pound out my chest, I have an awful headache, my whole body hurts, I’m shaky and so so so fatigued. Is there anything anyone can advise to help me?
I’m still very new to my diagnosis and still trying to figure it out but I feel so helpless when I feel like this, I don’t know what to do to help it and starting to make me feel so down 🙁
Any suggestions or advice would be greatly appreciated 🥹 x
Written by
JLAR01
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Aww 😔🤗gentle cyber hug to you JL🤗. Sorry to hear you're poorly.A flare for me is much like the symptoms you describe. I also get insomnia so even though I'm exhausted I can't sleep. My skin breaks down n I get ulcers and rashes. I'm on treatment too so even though I'm on prescribed meds I still flare. I describe it as trying to walk through treacle..everything I try to do is so exhausting!! Have you heard of the spoon theory? It's a lady with lupus talking about how it is living with these conditions. It's helped me and I've shown it to family n close friends so they can understand what it's like for us.
As far as advice on how to deal with it..you have to be gentle with yourself. Chances are you're upset n tearful..if you wanna cry, scream or swear...it's ok. It's hard to get through these times when medicated but without treatment it's even worse.
Take paracetamol if you can tolerate it..every four to six hours for as many days as you need it. Rest...u must rest!! Trying to push on through will make you feel worse. Drink plenty of water. My appetite goes when I'm flaring too so small healthy snacks rather than a big meal will help. It doesn't matter too much if you can't eat but the water is important. Off gas it first. That means if your using tap water..fill a jug n leave it uncovered in the fridge for a couple of hours before pouring yourself a glass. It gets rid of the chemicals in tap water n makes it just as good as bottled. You can top the jug up as you go n add a cordial if you wish.
Write down your symptoms so you can relay them onto the doctor when you see them in the future.
Tell nearest n dearest how you're feeling..if you try n battle through they will assume your ok..you're not ok n you need to let them know so they can support you or give you some space.
Keep yourself warm n do whatever gives you comfort..a box set or a book..avoid too much social media time. Self care for you young lady🤗You're not alone 💜🌈🦋 xx
Thank you, so much 🥺 this response really did pull on my heart and made me cry, the support is so overwhelming 🥹I haven’t actually heard of the spoon theory! I’ll be sure to look it up! I really sympathise regarding flares, it seems for 2 days straight I’ve had one each day. I woke up feeling so energetic and did my food shop and now I’m exhausted as if I’ve just ran a marathon. Now I’m just sitting here feeling helpless. I’m taking regular paracetamol I’m hoping that will help me. I’ll defiantly do that with the water as I’ve been drinking tap water. Thank you so much 🥹💜
Keep a diary. You will find our what your first symptoms are, the warning signs. For me my scalp itches, dry eyes, dry mouth. Everyone different and I still get confused about what is flare symptoms re my condition or symptoms of an illness like cold, virus but I do find they com in tandem. An illness triggers symptoms of my condition. Keep reading up. Keep looking at old posts on here. Knowledge is power. But try not to get get stressed up in doing this.
If you need any further support or advice, you can call our helpline on 01708 731251, which is open Monday to Friday 9am until 5pm. I could also let you know of any local or virtual support groups that you could attend.
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