Has anyone gone into major flare - literally too painful to move - after becoming ill?

On Monday A&E diagnosed pleurisy (breathing inc. painful, like tight band round chest, and felt like being stabbed in back through to front with huge spear) and put on anti-bios; 36 hours later was in so much pain couldn't get up or stand or walk or raise my head or even brush hair . . . I have no strength in any of my limbs, my feet feel like they've bee ripped off and I'm walking on jagged stumps, except for big toe, which (like middle arthritic finger) is agonising . . . by Friday started to panic so got emergency GP appt and sent for bloodtests; given Oramo*** on top of usual (high-dose) painkillers so at least managed to shower this am - but it's only lessening the grip of the pain a very little. I have never had this before and am pretty frightened. Anyone suffered the like? Any ideas?

3 Replies

oldestnewest
  • Yes ive had this pleurisy combined with massive flare, however it is how i got lupus diagnosis. Its an unbearably painful condition i also had a percariditis at the same time & boy did i suffer! I was in hospital for 3 weeks on oxygen until my breathing was controlled - i couldn't get deep breath, yawn and was short of breath, i think this was a lot to do with percarditis though. The back pain with pleurisy is horrendous i couldn't lie down or turn on my side! To be honest i now get chronic pleuritic pain as my lungs became damaged from it i still have pain & struggle to deep breathe & yawn lol - not nice! Don't want to scare you every case is different but just to let you know i understand how your suffering, anyone who hasnt had pleurisy on top of lupus just doesn't understand. Be strong get plenty of rest & if your seeing no improvement soon go seek further medical advice, i did as i was in sooooo much pain & when i was admitted & scanned severe percarditis was seen - & required immediate drainage! If ever your very unwell keep going back to Dr, they kept fobbing me off with antibiotics but i cried to get into hospital - now thats bad !! Hope you feel better soon :)

  • Yes I have had pleurisy twice, terrible pain and also pneumonia more times than I care to mention and it always makes my lupus worse (I feel I have lupus but have no formal diagnosis just Hughes syndrome). I also react badly to the antibiotics... Get every single side effect going. They always bring on oral thrush &sores in my nose. Luckily unlike Sophieh I've not had pericarditis but I totally agree keep going back to your GP. Do hope you feel better soon but I'm my experience it always takes well over a month to start to feel a bit more normal! Best wishes to you x

  • Thank you so much, Mariad and SophieH - you probably both know how helpful it is to know that you're not alone. It seemed to me to be obvious cause and effect - body fighting huge infection = autoimmune conditions ramp up - but doc won't treat until she knows what she's dealing with, and she hasn't seen this before (and as I said, rheumatologist not convinced I even have Lupus - MariaH, like you I guess. So if I have to suffer this to get the diagnosis, then that's a small silver lining, I guess. Although right now, I'm beyond seeing any good in anything except that little bottle that must be the Victorian equivalent of laudanum! SophieH, I might just take your advice when I go back to the doc tomorrow - won't be hard as tears are never far this week. Once again, HUGE thanks for support. Jo

You may also like...