Could I have Lupus?: Hello I was tested for Lupus... - LUPUS UK

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Could I have Lupus?

Hello

I was tested for Lupus nearly 2 years ago and my blood came back borderline. I saw a rheumotologist where I was diagnosed with Fibromyalgia. I also have Hashimotos (Auto-immune disease causing an under active thyroid) and Endometriosis.

I was told I don't have Lupus back then, but still have symptoms of the disease such as hair loss, joint pain, extreme fatigue, mouth ulcers, chest pain and I have woke up today with a small rash on my cheek. I also get really dry skin on my face and body.

Do I need to persist on being tested again or am I worrying? Also has anyone else had borderline Lupus bloods before and then later being diagnosed properly?

Thank you in advance, I am worrying a lot at the moment with it!

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Hello Sophie1304

It's impossible for us to know the answer for you personally. But maybe a way forward would be to take a look at the LUK leaflet on diagnosis and symptoms, then talk it through with your clinician. Ask specific questions about whether your blood markers like ANA and ds-DNA are clear enough to rule a particular diagnosis in or out and what else might account for your symptoms. Don't leave until your worries have been addressed and you have a clear plan for further monitoring, assessment and care. lupusuk.org.uk/wp-content/u... x

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Thank you!! x

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Hi

I was borderline lupus 9 years ago, they diagnosed Fibromyalgia back then. Was diagnosed in January this year with SLE positive ANA positive DSDNA 😩 Good luck x

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Take a picture of your rash immediately and call your gp. With your Hashimoto’s, borderline tests, and other symptoms you are likely being watched carefully. Your doctor will want to know about the rash. The ulcers may be not be lupus related. Some are cancker sores. The hair loss may not be typical either. You might want to ask you g.p. what the rheumatologist thought. He may have diagnosed fibromyalgia at that time but told the g.p. to keep an eye on you. That is what is usually done.

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Hi Sophie1304,

Fibromyalgia can be commonly diagnosed in the early stages of lupus. Some of the symptoms associated with fibromyalgia overlap with symptoms of lupus such as tiredness, stiffness of the joints and increased sensitivity to bright lights. Mouth ulcers and rashes are recognised symptoms of lupus. We published a blog article on getting a diagnosis of lupus which discusses the certain criteria and tests that need to be met to make a diagnosis. You can read the article at lupusuk.org.uk/getting-diag...

Below, I have included some information links which you may find useful:

Oral/Nasal ulcers: lupusuk.org.uk/coping-with-...

Hair loss: lupusuk.org.uk/coping-with-...

Pain management: lupusuk.org.uk/pain-managem...

Managing fatigue: lupusuk.org.uk/managing-fat...

Skin: lupusuk.org.uk/wp-content/u...

As KayHimm mentioned, it would good if you can take photos of your rash so that you can show your doctor at your next appointment. Being tested for lupus when experiencing a flare is encouraged as this usually means disease activity in the body is at a higher level.

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

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Thank you everyone, I love this forum, it is so helpful.

I took a picture of my rash, it went pretty quickly though.

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My mum has been going through this for year's. I was diagnosed quickly with Lupus, but she's been having test's for the past 9 years and they keep finding nothing. She's even had a biopsy on her lung's to test for Sarcoidosis and that was inconclusive. She has all the same symptoms as my only in a milder form and hers have presented later in life. When I spoke to my consultant about it she said that there are so many autoimmune diseases that it's sometimes hard to nail down exactly which one someone has. She then told me that they believe I have another one other than Lupus, but they don't know what it is. This was the first I'd hear about this in the 9 year's since I'd been diagnosed. My mum has been advised to wait until she is having a bad day and then ring her GP to get blood test's done on that day. They've said that could be the only way to really get answer's. I know my test's are always worse when I've got the rash badly so it might be an idea to try and get tested whilst the rash is present.

Sorry I couldn't help any more, but I hope you get sorted.

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Thank you! Yeah it’s annoying as I will see my GP when I’m at my worse but bloods are a few days maybe weeks later when they have an appointment so by then the flare up has gone

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If you speak to your GP they can give you a priority appointment thing, where it's on your file that you have to have an appointment that day. I have it on my file and my mums just got it on hers, so try and ask for one of them if you can.

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I will do thanks. I feel like I’m constantly trying to find something wrong with me and the doctors are so fed up of me!

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We know our own bodies and we know when something is wrong so don't give up till you get that diagnosis and the help you need.

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