Are these signs?: I have recently (past month) been... - LUPUS UK


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Are these signs?

Holliee profile image

I have recently (past month) been experiencing awful joint/bone(?) pain especially in the hip, sweating during the night but being cold a lot of time during the day, noticeably losing more hair than I would normally, infrequent chest pain when breathing, weight loss (3-4kg since April), periods of extreme fatigue but now suffering from insomnia, itchy skin and dry patches on upper arms/back, blurrier than usual vision, small red bumps irking on upper arms/neck and face that are itchy.

Sorry if its a lot but i'm getting concerned and getting no answers from GP, being told i have anxiety and should deal with that when I am fully aware that what I'm experiencing is physical.

I did have blood tests/an x-ray done in A&E on tuesday when i went in concerned about the chest pains, x-ray clear but D-dimer results came back positive so they suspected a blood clot on the lung due to the pain....CT scan next morning showed no clot so discharged. Would the blood tests done have included ANA? I didn't ask at the time because i hadn't considered this.

Thank you :)

16 Replies

It could be a lupus flare. When were you diagnosed? Could you talk to your rheumatologist? X

Holliee profile image
Holliee in reply to Echo1988

Haven't been diagnosed! just randomly started getting all of these symptoms recently and GP's don't seem to be helping so I started looking into reasons myself...

Just wondering whether they sounded like classic SLE symptoms, I don't have the classic butterfly rash but generally itchy all over with dry patches on my arms

Echo1988 profile image
Echo1988 in reply to Holliee

It's hard when you don't have the answers. It's possible. It also could be a number of different conditions. I'm not medically trained. Either keep pushing your doctor for answers or get a second opinion. X

Paul_Howard profile image

Hi Holliee,

I don't imagine the tests you had done would have included ANA unless they suspected that the problem was autoimmune and requested the test specifically.

Have you discussed getting referred to a rheumatologist with your GP? I think it is important that you are seen by somebody with more experience of autoimmune conditions to help diagnose and treat the cause of your symptoms.

If your GP is not willing to make that referral, then you may want to consider seeing a different doctor.

If you need any more information about lupus and how it is diagnosed, I would be happy to provide you with one of our free info packs. Just send me a private message or email with your name and address and I'll pop one in the post.

Holliee profile image
Holliee in reply to Paul_Howard

Hi Paul!

Yes I didn't think a ANA would be standard as I think they were looking for something more physical but I know they wanted to look at my thyroid levels as I have lost a lot of weight recently. Never got told what the results of any of the tests were, only that the one test came back positive and that I needed the CT scan.

I've had a very hard time with GP recently as having anxiety does make them decide all of my symptoms are in my head and things such as my near constant night sweats are down to worry. Going to call haematology on Monday and find out which tests were run and then call my doctors and arrange for some more.

Which tests are the ones I should be asking for? I feel like I've read them somewhere but can never remember.

I have a lot of information online but thank you anyway :)

Paul_Howard profile image
Paul_HowardAdministrator in reply to Holliee

You can find details about the different blood tests for lupus in our factsheet here -

Hi Holliee,

It's a nightmare when a lot of symptoms are put down to anxiety when you really believe something else is going on too...

Unfortunately, anxiety can cause a lot of problems. But over the years when things symptoms keep coming and going, changing, moving about it is depressing. I hope you manage to push your GP to test more.. I gave up for a bit but after a trip to the dentist today (just posted about that) I might push for more tests again...

Good luck!

Holliee profile image
Holliee in reply to trueman

Its very stressful!

My mother won't even listen to me anymore because she came with me to the doctor and he was adamant I was just brining the majority of it on now she believes the same.

I am fully aware of my anxiety, and also fully aware of how my anxiety makes me feel so it is very off-putting to be told that you're essentially making it up!

I'm also only 22 which I feel makes the doctors less likely to take me seriously!

I'm going to find out what I had done the other day and then push for some more!

And you'll have to keep me updated on how your tests go! x

in reply to Holliee

Hi Holieee,

A lot of Lupies experience anxiety and depression. I did. I took meds and I felt better. I'm no longer on them, but I still sometimes get anxious. Ask your Doc to test for ANA test. It will tell a lot about what is going on. Your symptoms were similar to mine. I have SLE. Best wishes to you.

CosmoLupie 💜💜💜💜

Oh Hollie I really feel for you, your still just so very young and your mum doesn't believe you, that would break my heart if my mother ever just fobbed it off as me being silly or imagining it. My daughter is 17 and she has a few aches and pains and I said to her she should go and be tested, but she hates needles, so I will leave it up to her, but of course if she gets any worse and I think it's a true sign of Lupas, I will defs drag her to the Drs myself.

I wish you luck🍀 Hollie, and we here all believe you if that's any conciliation. Take care Darling. ❤️

Holliee profile image
Holliee in reply to Razoo

Thank you for such kind words! The people in these forums are keeping me sane lately! ❤️

I think my mother just wants to believe it's nothing and my GP saying it could all be my anxiety certainly didn't help as now no one will listen to me 😞

Hopefully getting more tests will give me some kind of insight!

I am exactly the same as your daughter, HUGE needle phobia but in the hospital I braved 5 of them as they messed up my blood tests a few times by blowing out a vein and then 'losing' some other ones!

Then I had to have a cannula for the dye injection for the CT. I got so upset that they used numbing cream to take blood etc. and it made a huge difference even if it was just that I was less apprehensive and felt like I had done something to control the situation 😂

So maybe something to consider for your daughter?

Thank you for being so understanding, and I hope your daughter conquers her fears like I have! 😊

Razoo profile image
Razoo in reply to Holliee


Hi Hollie. Hope you are good today. I find with the anxiety the best tip is to try to rule it out! So do all the breathing techniques, go for a little walk and take half hr out to relax somehow!

Do this every day and then if the symptoms don't go away just tell the GP you have been doing all the things you should...

Called the GP today, explained I was having night sweats that are so bad that I'm waking up because of it and struggling to get back to sleep.

Had to go in for bloods today but only thyroid tests, I was hoping when he said bloods that would include an ANA etc. but the nurse informed me it was just for thyroid. I can't imagine I have anything wrong with my thyroid because I'm missing a lot of the symptoms and showing ones not associated with it, but I'll find out Thursday!

trueman profile image
trueman in reply to Holliee

Well I've had the thyroid checks. Came back a bit questionable then went normal again. Hope you can keep pushing if still no answers. I get the sweating at nights too. I will check to see how you got on if you post. My results general bloods Friday.. And going to push for the SS blood tests too.

Good luck!


I had exactly the same!! I’m 35 and just recently diagnosed. For 3 years I would see my doctor for various symptoms. Joint pain (dr told me to loose weight), skin blisters (dr had no idea what they were but said was probably stress and anxiety) chronic fatigue (stress and low iron count) swollen knees and ankles (allergic to moisturiser) I’ve heard it all. Getting diagnosed with SLE & Sjrogens was in a bizarre way was the best thing! It made me feel like I wasn’t going crazy!! My family and friends I could tell were starting to feel like I was just making it all up. Although they were supportive there was always an undertone of “just pull yourself together”. Now they are the most supportive group and I feel blessed. I know it’s super hard but please persevere with going to your g.p and speaking to them. You are not alone I promise. Nearly all of us on here have gone through the same so when you feel anxious about it all just drop us all a line so you know we are with you every step of the way xx keep going lovely you will have your answers soon xxx

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