Hi. I don't know if this is the right thing to do to introduce myself but here goes! I am a 34 year old mum of 2. Have a busy NHS based job when I am not on maternity leave.
I don't have an official diagnosis of lupus yet but have just started the ball rolling. My symptoms have been ongoing since 2001- I was diagnosed with ME in 2004 but it never sat right as a diagnosis with me.
Over the course of the last 16 years I have had chronic fatigue, joint pains (mainly my feet/ ankles and wrists), spinal problems (herniated a disk in my back from picking up a couple of cd's. ..), migraines, mouth and nose ulcers and most recently and still ongoing incredibly itchy, sore red discoid rashes on my feet and back that I scratch raw as I cannot bear the itch. I have had a butterfly mask on three occasions but all disappeared before I got a GP appointment (in the days when you had a pager instead of a camera mobile phone! 😂). I pretty much stopped going to my GP as they made me feel like a bit of a hypochrondriac or that I was making things up or just kept giving me fungal creams for my skin which at best did nothing and at worst made it worse.
The last explosion of skin problems has left me really sore and desperate though so after googling like a possessed woman for the past 6 months today I went back to my GP. Finally convinced him to "humour" me and I have had blood taken for FBC, LFT and ANA. I don't want lupus- I am sure no one does- but after 16 years I want a name and a treatment to end this so that I can manage it and live a fuller life with my little girls rather than being so cripplingly tired all of the time.
Does anyone have any similar story? Will the tests ordered reveal if I have/ haven't got lupus definitively? Is anyone in the Liverpool area and able to recommend private or NHS specialists and what speciality I should get an appointment for?
Lovely name and welcome to the forum. Hope you find it helpful. Yours is a very familiar story sadly, diagnosis of ME first which doesn't quite fit and then later maybe a diagnosis of lupus due to worsening symptoms. Sorry you've been struggling so long but thank goodness your GP finally listened and you've had blood taken.
What you need is for the ANA to be positive because then your GP will refer you to a Rheumatologist for further testing. The ANA whilst non specific for lupus, does show if positive that there's something wrong with your immune system that needs further investigation. Keep all photos of rashes for the Rheumy and or maybe a dermatologist.
An anti histamine tablet might help the itch so that's something else to ask GP.
Hope that's helpful and good luck for blood results. Keep us posted. X
Welcome to the LUPUS UK community forum. I hope that you will find it a helpful place for support and information.
I'm glad to hear that your doctor has now requested some tests - you've been putting up with these symptoms for a long time.
Lupus (and other autoimmune conditions) can be very difficult to diagnose and because there is quite a bit of overlap between them, they generally have various diagnostic criteria. The ANA test that you have had requested comes back positive in 95-98% of people with lupus, so is a good starting place. It is not sufficient by itself to confirm lupus though because it can be positive in other autoimmune conditions and a small percentage of healthy people too. A positive result will indicate that further (more specialised) tests are required. You can read more about the blood tests used to diagnose and monitor lupus at lupusuk.org.uk/wp-content/u...
The nearest specialist centre for lupus to you would be the Kellgren Centre for Rheumatology at Manchester Royal Infirmary. This is actually a LUPUS UK Centre of Excellence.
If you would like more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...
Hiya! My story is similar to yours in a way. I was diagnosed with fibromyalgia about 11 years ago although I have doubts about this diagnosis. Main symptoms at the moment are feet, they burn and swell mostly at night and swelling on both arms (repeatedly) and leg pain omg my calves are the worst! I am currently waiting to see a rheumatologist as they are looking into previous ANA positive tests that I had done.
It just seems that everyday a new swelling occurs, if its not one thing its another.
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