Undiagnosed - does this sound like Lupus? - LUPUS UK


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Undiagnosed - does this sound like Lupus?

FairFacedFairy profile image


I hate to post on here without being diagnosed but I am just in need of some help. I have been unwell for the last 5 years and I am yet to have a reason for all of this. Do these symptoms sound familiar to anyone?

*Headaches. Don't respond to painkillers (currently being investigated by neurology dep) I have always suffered hormonal headaches but recently I have had constant issues with my head last few months

*reaction to light. Feel very ill after being out in it, come out with rashes. ( and also really struggling with work lighting)

*long periods of time where I feel like I have flu, fatigue.

* enlarged, tender gland under left armpit

*swelling, painful joints. I was investigated for RA as my mother, sister and aunty have it - came back neg for this.

*dizziness,vision issues

*hair loss

* trouble with breathing. Developed asthma due to bad allergies

*Digestive issues


*my sister has lupus

*autoimmune diseases are really high on both sides of my family

*the conditions I currently have are: psoriasis, Endometriosis, Asthma

I have been seriously struggling since I went away on holiday and my doctor believes I caught a virus (unknown) either before or whilst I was away and I haven't been better since - that was in July.

Any help/advice would be greatly appreciated


6 Replies

Hi howarth90,

Please don't feel that you can't post in here because you don't have a confirmed diagnosis yet. Many people are in the same position as you unfortunately and this site is a great place to get some support and information from one another during this difficult and often stressful time.

Many of the symptoms you have listed are common symptoms of lupus or other autoimmune conditions. With a family history of lupus too, I think it is important that it is investigated further. Have you asked your GP about being tested for lupus or being referred to a rheumatologist for further investigation?

If you need more information about lupus and the process of diagnosis, I would be happy to send you one of our free information packs. Please send me a private message or email paul@lupusuk.org.uk with your name and address if you would like one.

Hi Paul,

Thank you for your response. I will PM you with my details as I think it would be helpful.

I haven't been investigated for lupus, mainly because up until now I have been in the docs and hospital alot with my endometriosis so that was my only focus. And also some symptoms were put down to that. Also my sister only found out she had lupus whilst routine blood tests for her RA so I never thought oh, my sister has these symptoms, I may have it too. I will definitely ask my doctor as I have another appointment in a few weeks. As some of my symptoms are being investigated already by neurology , it's hard for me to throw in something else to be investigated for.

Keep seeking more information, demand more blood tests, it took me 8 years to be diagnosed. If you have a high ana then most likely you have lupus. Be persistent

Hi Howarth90

I know how you feel - I believe I have mild lupus but my bloods keep coming back negative.

Like you I have UV allergy, migraines and periods of flu like illness.

Every other blood test I have my white cell count is lower than it should be but not rock bottom. I've had a miscarriage previously and I have unexplained jaundice which is attributed to Gilbert's Syndrome now. I have had Raynauds since I was a teenager and I have multiple allergies to meds and foods........ They don't seem to be interested though if the bloods come back negative!

Have you been tested for psoriatic arthritis? I used to have joint pains and swelling and in the absence of a positive RA test, I was diagnosed with psoriatic arthritis due to my having psoriasis and family member with PA.

I believe I actually had reactive arthritis as it came on suddenly not long after I had a flu jab which contained a live vaccine......immune system went into overdrive and attacked my joints as well as the flu virus! I got rid of my joint pains eventually by changing my diet - I don't eat tomatoes, peppers or aubergines otherwise the joint pains start again!

Keep pushing for answers if it's affecting your quality of life! I hope you get some answers soon x

Hi Zara-louiseD,

Thank you for replying. It's nice to speak to someone in the same boat.

I've been referred to a rheumy in the past, and had an ultrasound of my joints. Nothing came from that. So the arthritis route has never been investigated further.

Definitely going to mention this again next time I am at my docs.


If I were you I would get in contact with a rheumatologist as soon as possible. I don't know where you are from, so you may need to go through your GP if you can't go directly to a rheumatology hospital. Personally, I have lupus and fibromyalgia, and I do have a lot of those symptoms, but so do a lot of autoimmune diseases. If your gp only runs blood tests (ANA) to determine whether you have an autoimmune disease or not, then remind them that although it is a positive ANA in most cases, that is only one criteria, and not all autoimmune patients do have a positive ANA. I also suffer from endometriosis like you, so in all honesty I do get my symptoms blurring together with difficulty to differentiate which symptom comes from which condition.

I would say that it is important to get this investigated further, especially with a family history of Lupus and other Autoimmune diseases. Best of luck!

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