lupus flare?

The past few days iv been so tired all I want to do is lay down. my body feels like it's ran a marathon and no matter how much sleep i get I feel done in and my leg muscles feel so weak. is this normal and do others feel it ? I'm still off work . I'm a support worker but since being told bout the lupus in September it's been a trial and error to get meds right and try bring in my lupus under control but the fatigue and tiredness in my job i just can't see myself doing my normal job again .

its just not fair and I know there's worst people off as I'm told daily but it's not nice feeling like an 150 year old

2 Replies

Hi Andreabm

It can take a long time to get the balance of medication right with Lupus making it very tough. What do you take?. Could you do less hours at work?. Are they supportive?. Hope you feel better soon. X


Hi Andreabm,

I know exactly how you feel; at diagnosis, my symptoms were not visible (no rash, no swollen joints) but everything ached, I felt weak and exhausted. I was only given hydroxychloroquine and low dose steroids and told to take paracetamol. This went on for 4 years until i moved and got a new team of doctors who gave me a higher dose of steroids (initially) to calm the lupus then started me on stronger immunosuppressants. It was the only thing that made the pain (mostly) go away, also the fatigue improved. Looking back now I wish that I had pushed my rheumy harder to let me try stronger meds earlier, as I suffered for 4 years trying to work full time while in pain and being completely exhausted. So, my advice is to contact your rheumatologist or lupus clinic nurse if you have one, and tell them you cannot cope with your normal life and work despite being on your current meds, and your symptoms are flaring once again.


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