Hello , back to hospital next Monday for MRI and had to have bloods taken today due to increase of symptoms and fever last night .Is it common to have knees be in pain but then flash and swell purple and be in absolute agony last from ten minutes to all day/night. Her fingers have been suffering with this and yesterday was at school for an hour when I got a call asking me to get her as she could'nt hold a pencil to write , she had an awful day . Had to carry her to bed as could'nt weight bear . Today similar and the knees and feet becoming more frequent with this purple rash and heat at least three times today and twice unable to bend her leg . Also does anyone else get content sore throat and dry ? She also keeps saying things taste funny ? She also says every thing hurts all the time but then bits of her hurt more . Can't believe how brave kids can be and how sad it is that they just try and get on with it without fuss as if it is the norm. Also - sorry ! Stabbing pains lots of this going on , chest, stomach, fingers, toes , eye, back of head . I am using heat pads, hot water bottles and electric blanket which I have to say is amazing for relaxing the muscles for her , but gets fed up with it if left on to long . I know it's hard to truly comment with a loose diagnosis I of systomatic vasculitis , but for me it really helps to understand and ask the right questions when I next go. Many thanks
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