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LUPUS UK
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Am suspecting I have lupus

Having bloods done today for Lupus, I myself have asked the doctor for this who looked at me bizarre. I have been suffering weird symptoms for some time years really but lots of the symptoms sound like lupus for example I get a very mild spotty like rash on my face an chest which comes and goes. I always have sores on the back of my head again they come and go, I recently kept getting chest pains but nothing came up on an X-ray. I don’t sleep I wake up every hour or two I have dry eyes a lot and the other symptom is the cold sore type things I get around my nose all the time after weird sneezing fits that last a good 8 hours and then I wake up fine the next day and you would swear I was full of a cold. I have read that lupus doesn’t show up in blood tests so am expecting nothing to come up and then the doctor fob me off so we will see.

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Hi Geti76. I have had many of your symptoms for much of my adult life but I don’t have Lupus. I have Hypothyroidism and Sjögren’s.

Lupus usually does show up in the blood in form of a positive ANA and a more specific marker dsDNA - same with the other rheumatic diseases. This isn’t to say you can’t have it or others such as RA and Sjögren’s with negative bloods, but it is much more unlikely. Have your thyroid bloods been checked too? If not might be a good idea to get these checked as well.

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Could be lots of things. Luckily the treatments are all pretty similar. Follow through with all of your different blood tests and keep up the chase. It takes so long to figure out the right diagnosis and right meds. Try not to get discouraged!! Hang in there.

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Hi Geri76,

How did your appointment go?

It currently takes an average of seven years to diagnose lupus; there are specific tests and criteria that are required in order to make a diagnosis of lupus which you can read about here: lupusuk.org.uk/getting-diag...

Flu-like symptoms, oral/nasal ulcers and rashes are common symptoms associated with lupus. To find out what other symptoms are related to lupus please click here: lupusuk.org.uk/the-symptoms/

Oral (mouth) and nasal (nose) ulcers occur in around 45% of people who have SLE. We published a blog article on coping with oral and nasal ulcers which you can read here: lupusuk.org.uk/coping-with-...

Around a third of lupus patients have some sort of eye related matter such as ‘dry eyes’. We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u...

To read our blog article on 'pain management' click here: lupusuk.org.uk/pain-managem...

Regular exercise helps to improve sleep quality. Exercise should be done at least a couple of hours before going to bed; otherwise the mind may be too active, making it more difficult to sleep. We published a blog article on exercising with lupus which you can read here: lupusuk.org.uk/lupus-and-ex...

The NHS Choices’ website provides information on sleep hygiene which I hope you will find useful: nhs.uk/LiveWell/sleep/Pages...

Please keep us updated, wishing you all the best.

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Thank you for all this I will give it a read. I think I’ve been suffering for a long time if am honest. They just looked at me like I was stupid when I asked to be tested, but did agree as they agreed something must be going on with all my weird symptoms. I had bloods taken on Friday morning so I guess I will have to wait and see what they say. The bit I can’t cope with at the minute is the flu like symptoms it’s a lot like allergy sneezes, I sneeze for a full day and have like a fever so to speak and the next day it’s gone, am just left with cold sores in an around my nose. I have just been reading about a link with low vitamin d which came up in some tests few months back oh and high calcium. Will keep you updated. X

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