Hello.

[Ladybelle2015]

Feeling brave and decided to take the plunge and post.

I've been reading and following boards and feel a bit of a fraud. I don't have a formal diagnosis but have all the markers for lupus and feel that's most likely why I have been feeling so ill for a few years. For the past 3 years I've been back and fore to the GP as I've been having probs with bruises, headaches, joint pain and swelling, dizziness, awful itching, fatigue, insomnia and a painful/sore rash on my face.

Having read everyone else's experience I realise I'm doing ok. I'm able to work but that's at the detriment of everything else. I spend my weekends zombified on the sofa so that I can eventually drag myself out of bed for the work cycle again on Monday.

I've but on a ton of weight, despite eating less and I look bloody terrible. I've been for so many blood tests but always told their "normal", and I feel my GP's think is "in my head". Last year I was in Africa for three months so the malaria treatment did clear my face rash, but since coming back to the UK it's been back and more or less constantly there.

I just want my my life back.

[SLC03]

Hey, by the sounds of it you have lupus/ something similar. I had the doctors sending me away for many years saying I just had on going relapses of flu and depression (I'm a very happy upbeat person and I knew they were wrong)! It was only when I went to uni one of the doctors took notice and referred me to a rheumatologist. My blood tests would also return as normal as the bloods the GP will do only test for things such as blood count, thyroid, anemia etc. Ask them to check your ANA and DNA also your B12 levels I think it is. Have you mentioned lupus to them? If so I would go seek a second opinion and request to be seen by a rheumatologist . Unfortunately many people don't get diagnosed for years so do your best to push it and put pressure on a diagnosis so you can get on the correct medication. I was lucky seeing the doctor I did otherwise I'd still be living with it and arguing with the docs every time!

Good luck! Hope you get it sorted. Xx

[LUPUSadmin]

Hi LadyBelle2015,

Sorry to hear you've been having so much trouble. As has already been stated, I would encourage you to go back to your GP and ask for a second opinion from a rheumatologist. If you'd like more information about diagnosis you can find it here: lupusuk.org.uk/publications/ There's a factsheet called: 'LUPUS: The Symptoms and the Diagnosis' that might be particularly helpful. 'The Diagnosis of Lupus' is a booklet available on there, which goes in to a little more depth. Have you been tested for lupus? These documents will help you to understand the kind of tests that might lead to a diagnosis.

You can order or download a free information pack here: lupusuk.org.uk/contact-us/.

- George

[Ladybelle2015]

Thank you for taking the time to reply. Definitely woke up on the wrong side of the bed this morning.

I'm not great at going the the GP, and find it draining to battle with receptionists to be honest. I haven't mentioned lupus - as my doctor really doesn't like people "diagnosing themselves". I'm sure eventually I will get sorted out, and from reading these boards I'm in a much better position than a lot of people.

Just tiring isn't it?

[SLC03 in reply to Ladybelle2015]

I felt exactly like that. Even now I hate going when somethings wrong. So tiring arguing with your doctor but they don't know exactly what you feel especially as majority of lupus symptoms are invisible without the right tests. Ask to see another doctor or just bite the bullet and mention it... You'll not be worse off for having mentioned it to them! X

[Penelope-Mary in reply to Ladybelle2015]

Good luck, keep going and try not to feel dishearten, we are here on this forum, for you.🌷

[Wendy39]

Hello. Sorry to hear you are poorly and feeling frustrated by your medical care. I did actually go to the doctor and say, my husband thinks I have lupus. The GP I saw that day agreed and said I needed to see the surgery's skin care specialist the next open day, which I did. She also agreed and ordered all of the relevant bloods immediately. She ordered the lupus screening ones and thyroid etc so they could be ruled out. I was lucky they both could see where I was coming from and my bloods came back positive for specifically SCLE. This was then referred to a rheumatologist for them to confirm it all and prescribe hydroxychloroquine. Looking back I had had a first major flare in 2009 and it took until 2013 (2nd flare) to be diagnosed. I was extremely low, in so many ways. I never really thought about upsetting the GP by self diagnosis. My husband could have gone into medicine but chose engineering and he always says yes they are clever but they are human beings too. I think with me I had been going backwards and forwards to the surgery for various skin complaints etc and they had treated me for each symptom individually, but none of them had taken a step back and looked at the overall picture and thought could it be lupus. (My husband only came up with the suggestion one night after watching a programme about GSK and a new drug for lupus, I was in bed sleeping from 7pm as had been my normal pattern for weeks). Anyway, I hope the responses you have help you. We have to be experts in our conditions and actively manage our illness, as in fact, with your reading, research and information gathering you will end up knowing more about lupus that your average GP. A GP in an average practice will only diagnose a new case of lupus every 7 years. So it may not be the first possible explanation to cross their head. Good luck.

[jeanie94]

Hi there!

It took them 5-6 years to properly diagnose me.

I first was under haematology unit then I went into remission. They believed me to have idiopathic thrombocytopenia purpura, then when I came out of remission with a haemorrhage at school they did a few more tests, and were tossing around the idea of leukaemia. Its only being referred to the immunologist in the auto immune and infectious diseases unit at john hunter hospital did the doctors look at all my test and all my history. I had a bone marrow test confirming I had something ... Having a mental blank of the words in after... Of lupus.

That with my headaches, the rashes, the sensitivity to light, the easy exhaustion which people kept testing me for diabetes for.. Among a few other serious problems id rather keep private. Nothing against you guys, I just dont like to sound like I'm competing or fishing for sympathy. The people in my life aren't very supportive and when I'm having a bad day generally I'm "milking it" or being melodramatic.

But basically it takes time and one person to really sit down and look at you from a fresh perspective to really understand what you are going through.

I wish you all the luck in the world. And I hope you seek a second opinion

[ac489 in reply to jeanie94]

The worst part is trying to make people believe there really is something wrong and we feel sick and hurting. I have to hear "you need to get up and move around and go out because laying in bed is what makes you feel bad". Well when you are hurting and nauseous, the last thing you want to do is get out of bed and out in sun and bright lights!

[jeanie94 in reply to ac489]

Very relatable. Its an invisible illness. Alot of people dont understand what they cant immediately see.