She has just had her first round of tests that show a positive for lupus. She hasn't seen the rheumy yet. My friend writes:
"I live in Weston-Super-Mare, the hospital I was taken to is Weston General and I haven't been able to see a rheumatologist there despite asking... and ending up there twice!
I have an appointment on the 14th sep at Bristol Royal Infirmary to see the rheumatologist there - perhaps someone on the forum has a number for the lupus nurse there, or the rheumatologist's secretary?? (I've speeded up hospital apps in the past by hounding the secretary before... although as you say, they don't want to know you until you've had your first app.)
The pain has been worst in my kidney's (to the point that it makes me pass out when it gets really bad) but it has also been bad in my chest, heart/lung area, joints (this has been really bad - mostly in my arms/hands/legs) also abdominal pain, bladder, and period type pains in my ovaries etc despite not having my period. Also my skin has been very sore - likes its all bruised and hurts to touch. The pain also keeps moving around... so one minute my chest will really hurt, the next my hand is too sore to pick up a cup of tea... so it's kinda odd...
My breathing has been painful on and off... not too bad today, although when I was in hospital they did a chest x-ray - didn't show up anything obvious which is good I guess!
My joints haven't been red or swollen, my face hasn't been burning, although I've had a very faint butterfly rash - not very notable to someone who doesn't know me, but I know that it isn't there normally (unless I go in the sun).
I have just about managed to go to the loo etc unaided, when the pain lulls I can sit on a chair for a little before getting too sore, or potter a little, otherwise I don't leave the bed because it's the softest place! Cooking/cleaning etc is too difficult due to the pain (plus I'm a rather tired!) "
Any advice welcome. Thanks.