Hi ,like I said ,I am new to all this,and only found out about lupus 4 months ago via a facebook message but having read about the signs and symptoms I am absolutely sure that I have SLE.
When I read the s&s's it was like someone was reading out my personal medical history for the past 20 years.It has come as a great revelation to me as I had always felt (and been made to feel)that all my problems were in my head.I was constantly told that my symptoms were connected with the PTSD and depression I was suffering,that the mind could play nasty tricks on the body(which I dont disagree with as it goes).I have learned since that it was probably the PTSD that set me along this road in the first place.
When I suggested SLe to my GP he stated quite categorically that I didnt have sle as there "wasnt enough inflammatory stuff going on"-bearing in mind I had been suffering from tendonitis of both elbows and left hip for over a year,had dry eye,nasal and mouth ulcers ,breast pain for 6 months(which he said were a mind trick??),general aches and pains and the most unbelievable fatigue from the moment I opened my eyes in the morning.
I ,needless to say,changed my GP and now have one who readily admits he knows little about the disease but has referred me to a rheumatologist on 7th august. I pity the specialist in advance !
I have to say honestly that although I dont want to have SLE ,IF I have it at least I will know what I am up against (more or less!) I prefer that to feeling like I am sitting in a darkened room with my hands and feet bound and a sack over my head which is how I have felt for a very long time.
I long to feel free of the guilt of the tiredness.
I long to be able to hold my head up in a spike milligan way and say "I told you I was ill" (its on his headstone for those who dont know!)
I look forward to the day I can say to my husband "this is what I have" because he really does not have any idea despite my trying to explain(its rather difficult without a diagnosis at this point!even if I DO know).I long for the day we can sit down and discuss how WE are going to deal with it all and work around it.
right ,thats me and my "yet to be" Lupus.
I feel better for offloading ,so thank you !
best wishes to you all