hello everyone.
I have always been a really active person. I consider myself athletic and constantly keep myself busy.
But have been struggling with fatigue for a few years and put this down to IBS and getting older (late 30’s) but despite my IBS being well controlled now, recently my symptoms have become more noticeable. Some days I wake up and feel like I haven’t slept for days, like I’ve been hit by a train.
More recently I have also had joint pain. Sometimes more of an ache and other times a sharp seering pain. This is usually in the knuckles of my fingers and wrists and right knee. Sometimes I get redness in these areas too. And I generally feel stiff, like I’ve got cotton wool in my joints. My limbs feel tired and heavy. I described it to my doctor as I feel aged before my time, usually these symptoms are in the morning. This alerted me to see a doctor as my mother has rheumatoid arthritis and wanted to check myself out.
I also find I get what I think is a malar rash after I get stressed or tired. My cheeks feel hot and they go bright red but I wouldn’t call it a rash, more of a blush. It doesn’t always go over the bridge of my nose but some days it does. I get dizzy easily, I get more motion sick than I used to, more headaches, and I also have Raynauds when I’m stressed or cold. I’ve had a fever during one of these extreme tiredness days, but this is not a regular thing. I do get intermittent night sweats but these are quite rare.
Some days I am completely normal, others I have one or two symptoms, and some days all the symptoms. It’s completely random but I do find stress or doing too much really brings on the symptoms. Some days my symptoms are for a few hours, other days it all day or for several days
When I saw my doctor they did some basic haematology and biochemistry tests which were all normal, as were my hand X-rays. So she said I was normal and felt Rheumatoid arthritis was unlikely. Thankfully I have been referred to a rheumatologist regardless but have several months to wait for this appointment.
I have medical background and have a diagnostic mind, so I felt unsatisfied with the lack of clear cut results and with the feeling of not having an answer so I got some more in depth bloods done abroad. Most of this was normal except
ANA 1:320 and Anti sm u1-RNP weak positive.
I know ANA is not very sensitive or specific. My ESR and CRP were normal. So I’m struggling to know whether it’s still possible for me to have lupus.
But the symptoms of lupus seem to marry up with what I experience so well. Except I don’t have photosensitivity, hair loss, ulcers or any renal issues.
From what I have read diagnosis can be slow and frustrating firstly because everyone’s symptoms vary and there’s not one clear diagnostic test, but I so badly want to understand what’s going on so I can manage my life and for people around me to understand why I can’t get out of bed some days. How did everyone cope in the lead up to their diagnosis?
I have recently been diagnosed with SLE Lupus
Just diagnosed with possibility of having Lupus
do you think i have lupus, please? x
