Feeling down

[Dooters]

Hi im a 47 year old female. For the past 3 weeks i have been experiencing widespread pain a lot of pain in the ribcage area and a low grade fever. Have been to the doctor and waiting on bloodwork coming back. Very fatigued. Does everyone have to have the classic butterflty rash to confirm lupus. My doctor said if all my bloods come back normal she is going down the fibromyalgia route. I would be grateful for some feedback

[Natura]

Hi Dooters...my bloodwork shows no lupus. Did once. I have a lot of symptoms still. Not good in the sun, inflammation in my lungs, scarred kidneys, clottIng gene, scabs on my scalp with itchy redness, joint pain, digestion issues, liver not right, dizziness. I could go on. In fact, I woke up today with a strange rash on my neck (posted today). Never had the butterfly classic rash across the cheeks. Doesnt mean I dont have.

I always get a copy of my bloodwork, because if I am one number outside the range, drs says its negative. If I have symtpoms, and the numbers are lose, could that be a positive. They call it seronegative if bloodwork negative, but symtpoms show.

[Rubylu]

I stumbled across this webinar, which I thought was a really useful presentation on RA and SLE. I hope the link works. youtu.be/iqpRW2RraYw(Not working as expected?)

[Jicci7 in reply to Rubylu]

note to self ~ watch this

thank you

[Rubylu]

I'm sorry you're feeling so unwell and fed up. I hope the doctor follows this up with you so you get some answers or appropriate referrals.

[Dooters]

Thank you so much everyone. Dont feel so alone anymore xx

[lupus_01]

Hi i have also got ribcage pain along with various joint pain but no rashes.

I have lupus antibodies but ana negative. Hla b27 positive.

Have been told i have overlapping lupus and ankolysing spondylitis. Still having more tests but i am on hydroxychloroquine and aspirin as i refused methotrexate.

Still dont think doctors really know anything and to be honest if i listened to some of the website forums for lupus i would probably top myself. I am firmly blaming the menopause for increase in symptoms so hope if i can get through next few years things will settle down.

Do what suits you. Keep hitting your head against the brick wall when dealing with the medics ( one of these days they will get it!)

[Charliebear68 in reply to lupus_01]

Hi Dooters,

I'm still on the process of getting a diagnosis that 'fits' my symptoms.i have pain in my joints and ribs,fatigue, mouth and nose ulcers, headaches, brain fog....I do have a rash but they are querying rosacea...it isn't easy when you keep on being told it's in your head. I've just seen a rheumatologist but have requested a second opinion as he didn't listen to me, he was more interested in my blood results and my GP letter stating I had CFS. I have tested positive for anticardiolipin, low vit d, low calcium, stage 1 CKD...amongst a few others ( can't remember off the top of my head) but he just stated all (except anticardiolipin) was normal. He took no history from me or asked how I was or examined me. After i disagreed and said i wanted to see Dr D'Cruz, his attitude changed. He suggested I get repeat bloods done for anticardiolipin in a few weeks (12 weeks in between required) and if I wanted to see another rheumatologist he suggested a few of his colleagues. I declined. I was so disappointed but as you will learn on here - we know our own bodies and you are well within your right to say no! I have and now I'm waiting for next step.

Unfortunately, we have to fight for everything when dealing with autoimmune disease but the support on here gives you strength and knowledge to know when you're being fobbed off!

Keep fighting and you will get support from here!

Charliebear xx

[Chanpreet_Walia LUPUS UK]

Hi Dooters,

Welcome to the LUPUS UK HealthUnlocked Community!

Have you informed you doctor about the pain you are experiencing?

Flu-like symptoms and extreme fatigue are symptoms that are commonly associated with lupus. Lupus presents differently in everybody, therefore, it is rare for two people to share the exact same symptoms; not everyone will experience a malar (butterfly) rash. In fact, according to our booklet ‘Lupus and the Skin’ (lupusuk.org.uk/wp-content/u... only about a third of people with lupus develop it.

Fibromyalgia can be commonly diagnosed during early stages of lupus. There are a few blood tests that are checked when diagnosing lupus. These are discussed in our free information pack; to download or request the pack please click here: lupusuk.org.uk/request-info... .

Wishing you all the best, let us know how you get on.