Think I may have Lupus 😔

[Fray]

Hi I’m new to this forum, since 2012, maybe even before I have had a butterfly rash across my nose, severe pain in my neck and shoulders, a rash on my leg, pain in my wrists (diagnosed with carpel tunnel) pain in elbows, ankles and knees, hair loss, severe fatigue, low mood etc. I have obviously seen the doctor and have seen a rheumatologist, had an MRI of head and neck, seen a consultant, been put on a pain management course, CBT, physio and have had a half hearted diagnosis of fibromyalgia and/or ME. I am 99% sure I have lupus and have mentioned to the GP before that I thought it may be lupus and looking at past bloods he dismissed this? Anyway I think bloods came back pretty much normal normal but my liver test ALT result was 59 and the Range should be below 45. Also CRP was 9 and Range is 0-5 and have had low Vit D, anyway I feel ill 24/7 and am at my wits end and don’t seem to have any answers, I hardly ever go to the doctors as they just infuriate me, I have booked an appointment as I am in so much pain with my joints and neck at the minute but the earliest appointment I can get is 12 Dec! The only medication I take at the moment is Gabapentin and that’s for my neck pain fibromyalgia. I don’t know what else to do, why does the GP just dismiss my concerns? I feel so ill , sorry for going on but I don’t know where to go from here I just want some answers 😔 just wondered what you all thought with the symptoms I’ve been experiencing, this has been going on for at least 5 years now and frankly I’ve had enough. I attach a picture of my leg rash, this has been there for years and never gone (apologies)

[puffyface]

Have you had your ANA checked and antibodies? Have they given you any diagnosis? I think they find it all pretty hard to diagnose....but that makes it horrible for us!

[Fray in reply to puffyface]

Thanks for taking the time to respond. Think he checked it a while back and it was negative so gave me the diagnosis of fibromyalgia but the rash across my nose/cheeks has been there since 2012, together with my neck/joint pain/fatigue

[Paul_Howard Partner LUPUS UK in reply to Fray]

Hi Fray ,

I'm sorry to hear that you are having difficulty getting a diagnosis for your symptoms. If it is lupus causing your symptoms you could be one of the cases where the symptoms develop gradually, this does unfortunately make it more difficult to diagnose, especially if you do not have positive blood test results.

leslieliesel 's suggestions of requesting a skin biopsy could help with getting some clinical evidence for a diagnosis. It is also worth repeating autoimmune blood tests if they haven't been done recently.

If you want more information and advice about getting a diagnosis of lupus, please take a look at our blog article here - lupusuk.org.uk/getting-diag...

Let us know how your appointment goes.

[leslieliesel]

Tell your GP to do a biopsy of your rash....That is how I was DX'd

[Fray in reply to leslieliesel]

Thank you for taking the time to reply, I will ask that when I see hi on the 12th thank you