This forum is brilliant

[MsAndyIvy]

As you may know I’m still Lupus undiagnosed and have been fobbed off with ME, fibromyalgia and chroocymigraine. I’ve tried to interact with said forums and by ‘eck they don’t match up to this one.

Lupus lot... my hats off to you. Thank you xxx

[Lupiknits]

Thank you !

[Treetop33]

I agree. It's been a lifesaver.

I can't remember your previous posts but have you tried going private for your diagnosis? The first person I went to see was Dr Kaul at the London Lupus Centre, and he was brilliant.

[MsAndyIvy in reply to Treetop33]

Hi TT

Yup tried private as well!

[Treetop33 in reply to MsAndyIvy]

Oh sorry...how frustrating.

[whisperit]

You're right, MsAndyIvy! x

[Cann]

Because the symptoms are so varied and widespread, I can understand why doctors are reluctant to diagnose lupus especially when blood tests appear normal.

By sharing our experiences and symptoms and even how we attempt to deal with them, we can do a lot to help ourselves.

I know that when I have a lot to do and don't rest enough my symptoms become far worse, but I need to be active to a point or my immune system over reacts - it is like a balancing act and good to read so many are like me.

I am affected by the extreme cold and heat, but this time of the year is bad for me, too, with the high pollen count and UV index. I wonder if I belong on this planet!