Back in hospital 😞

[dar58]

The petechiea started to go away, and the pain meds took hold. That was just for a few days. Petechiae is back and severe pain in my bones, deep. I can't take this pain its from just below the hips down both legs to the feet. Even if you touch the bones, the pain is terrible. I hope they find something soon, so as to be able to treat me. I keek telling the Dr this isn't a lupus flare or MS flare, this pain is so different. Trying to send pics, they are non blanching petechiae.

[Rubylu]

Gosh, how horrid. I hope you're being screened for sepsis if they are non blanching. You're obviously in the right place and I hope they can manage your pain soon too. Poor you. Get well soon.

[Patricia2015]

Poor you

The pain sounds neuropathic. Gabapentine should help.

Hope you get pain relief quickly. Sending you lots of hugs.

Get well soon.

[EOLHPC]

Hello again dar...am so glad you've kept close to your medics about all this....am vvvv sorry things are now especially tough...and am vvvvv glad your medics have revved into action...you're in the right/best place now...am sending you lots of Easter Best Wishes...please let us know how things go

🌷🐣🐰🐝🍀❤️ coco

[Hidden]

Have they ruled out Vasculitis, some patients develop it secondary to Lupus but it's rare.

[Hidden in reply to Hidden]

resources.lupus.org/entry/v...

[Hidden]

Sorry you are having such a bad time. I have had very similar pain to what you describe in my legs coming and going for about 4 years now and petechiae that come and go and look much like yours.

Mine is flaring just now and I'm told by my neurologist that it is presumed to be small fibre neuropathy. I did end up in hospital a few years ago the same pain started affecting my face and my inflammation levels were off the charts. None the wiser still although I've since been diagnosed with Sjögren's - probably primary - and small fibre neuropathy is a major symptom for 20-50% of sufferers. It is excruciatingly painful. I take Mycophenolate and also have secondary Raynauds which I was told might also be responsible for the awful nerve/ bone pain (I call it toothache in my feet and legs.

I don't know more about the rash as it's starting to fade again now and I've not asked doctors. When I had it previously up both legs too, it related to Nifedipine and Methotrexate I believe - but it always seems to tarry with flares of the SFN pain in my legs now.

I have taken photos of latest batch of spots to show my new rheumatologist on 25th of this month - but my previous rheumy just shrugged and said he wasn't sure what it was - some kind of follicular rash. This was a few years ago when I was mis diagnosed with RA. The second rheum said if it came back he would like to check my cryoglubulins for Vasculitis immediately. I have left it this time as I'm already on an immunesuppresant so am assuming it can wait.