hi, ive had sle lupus since 2005, during this time i have experienced many different symtoms;
neasea, visual migraines, joint pain (everyday),fatigue(everyday), dry eyes, swollen thumb joints so i cant bend them, my legs are 100 stone each, stomach pain, blurred vision, weight gain,depression,raynalds.....these are a few of them as my memory is horrendous i make "job lists" everyday so not to forget anything no matter how trivial.
my rhuemmy said " its lupus, learn to live with it,adjust your life" but thats easir said than done when i need to work to pay our rent and bills etc. im on 200 plaquenil daily, did try 400 plaquenil daily as told by my rhuemmy but had a bad headache for 36 days so had to go back to lower dose. told to take paracetamol but thats it.
i write lists of how i feel when i see my rhuemmy but im getting no where, she says if im not well inbetween appts to see my GP, i go to my GP and get told "dont know enough about lupus,wait til you see your rhuemmy"!!!!!
im fed up of explaining to people who say i look so well that im not, lupus is a "hidden" condition that sneeaks up on us and can give us different symtoms from one day to the next!
i keep my condition to myself unless someone gets nasty.
i take iron and multi vits everyday as im always borderline anemic, and vit d as im to avoid sunshine as it wipes me out even more..........sorry to whinge but im chasing my own tail, ive been told my rhuemmy is the best i can have in my area and travelling to london (guys and st. thomas) isnt possible as money is sooo tight that we cant heat our home let alone travel there.
just dont know whether just to say stuff it to it all, not go to hospital appts at all? and the cherry on the cake is ive just had a patch of skin taken from my foot and awaiting results!..........anything else! i can understand why my family think im exaderating.
im not a doom and gloom person, i always put on a brave face but i havnt the energy to do so lately......sorry x