So, 5/6 years ago I landed myself in A&E (ER) due to being unable to walk due to extreme pain in my hip which had been building up over a few weeks. I also had a horrible rash which appeared on my face after being sunburned one not so summery UK day. This began the investigations which led to me being put on hydroxychloriquine and a diagnosis of Lupus even though my ANA has always been normal. My Vit D levels were dangerously low at the time and they said way back then that a couple of my other levels were indicative of Lupus.
So here we are, 5/6 years down the line of living with Lupus and having also been diagnosed with Rosacea, Sleep Apnoea and Tinnitus I went to see my Rheumy on Monday for my 6 month check (although it's actually been about 10 months and I've given birth since I last saw him). Anyway, I didn't get to see him right away but had to explain everything to his 'minion'. I told her about my sore hips, sore pelvis, sore elbows. She asked me if my face is always this red, she bent me this way and that and she pressed all sorts of places around my joints that almost called for a team to come peel me back down off the ceiling ~lol~ She then left the room to discuss my case with the main Rheumy and they both then came back in for a chat with me.
They've decided now that I haven't actually had Lupus all this time and have now diagnosed me with Fibromyalgia instead. They're still questioning Lupus with one last set of bloods and an appointment to see me again in one years time but for the most part I was given an information leaflet, told that I would be given an appointment for Physio, that my treatment would all now be GP led instead of Rheumy led and sent me on my completely confused, merry way.
I feel so strange. A part of me feels completely robbed... like I've been living a big lie for the past 5/6 years and also kinda like I've had my membership to this amazing club here revoked suddenly and then the other part feels as though I was handed a get out of jail free card.
Anyway, I really just wanted to drop in and let you all know what's happening with me in my neck of the woods. I've been very quiet as of late as my 10 year old has been diagnosed with sensory problems, my 8 year old is being assessed for ADHD and I have a 9 month old baby all keeping me highly stressed and grey haired!
Hope I can still come hang out with you guys even if they do fully retract my Lupus diagnosis ~lol~