Might have lupus?! -_-: Ok so where do I start... - LUPUS UK


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Might have lupus?! -_-

Wiki_pie profile image

Ok so where do I start...

Ever since 2 years ago I've been suffering from sever joint pain. Mid October, I got really ill. I was exhausted constantly, felt as though I had the flu but without the symptoms. I went to the doctor but no virus was detected. They did several blood test revealing that my inflammation mark was a bit too high. Also keeping in mind that I might have livedo reticulars my doctor says there might be a possibility of me havin lupus...

My rheumatology appointment is in February 2016 but I don't know how much longer I can go without knowing... I'm really scared I'm only 14!!

11 Replies

Hi, hope you're feeling a little better, sorry can't help but just want to say enjoy your Christmas and hope you get a diagnosis and correct medication quickly.

Hi Wiki_pie,

What would happen if you were found to have lupus? Or something else? Would some big band start playing? The sky start falling? No....life would continue and you'll still have your aches and school...you'll just know a little more about why you don't feel so good. You may start on a medicine that helps. My point is that you don't need to be really scared because nothing phenomenal is going to change. You might as well start getting comfortable NOW with being UNcomfortable. That feeling that your body is OFF somehow...not quite all it could be if it were totally well and healthy. Because chances are that's your future and you already know how it feels.

When you learn how to accept that everything isn't perfect and you'll be living with some extra aches and problems other teens your age don't have, life gets easier. Sometimes you find out other teens have their own problems, too, but theirs are just different in some way. If you can relax a little more each day and accept a little more of your problems as the days go by, you'll find that you're not nearly so scared of the future. Here's a funny way to think about getting a diagnosis of some illness: Problems are meant to be tossed in a backpack and carried around as we continue to live our lives. We hear we have this or that diagnosis, but we don't stop living. We carry our problem on our shoulders (tossed in our backpack if we want to) and forget about it a lot of the time. We just keep on being who we are. We are not our disease. We are who we make our minds up to be. Enjoy yourself!

SjogiBear profile image
SjogiBear in reply to BonnieSue

What a brilliant way of expressing it - this is a really positive and upbeat message to read about dealing with something worrying and scary. I hope this helps Wiki-pie deal with their situation a little better. It's very hard with coping being 14 without the added strain and worry of having some kind of illness to contend with - I was 16 when I was ill and hospitalised with what turned out to be lupus . . . and I'm 49 now with a family of my own! Life doesn't just stop as SueSz point out :) x

Nice.I like your expressiveness??

You are funny. We need that, Bad. (MICH


OhMyGosh. You're on to something there. I'm very artistic! And the Myers-Briggs agrees. I do many things, but especially paint in oils and acrylics. I have several creative projects in the works and spread out in the house right now.

Hi Wikipie

Don't be scared, lupus is only one of many possibilities and an answer to your symptoms is the only way to get the right treatment and feel better!. It must seem overwhelming at times but there is a young person's group that Paul Howard at Lupus Uk could give you details of if you think that would help?. Good luck for your Feb appointment, it's tough having to wait, you could phone the clinic and ask to be considered for a cancellation to bring it forward. Let us know how you get on. X

Don't be scared you will be fine. They is so much help and treatment now for lupus. Sending you a hug be strong

Hi wiki,I know how you're exactly.. I had to wait three months and my gp didn't tell me why I was referred to the rheumatologist..it's a waiting game..to be diagnosed with lupus there are alot of blood test need to be done to know for certain that you actually suffer from lupus.there are so many treatments out there.don't worry and I'm sure you're in good hands..takecare and good luck.

Don't worry about the opinion of a Dr who says you ' might ' have lupus. Bit wrong of him to be sharing his random thoughts when nothing is proven yet.

It could just as easily turn out to be something not chronic and easily fixed.

I really feel for you baby. I'm diane from usa richmond va.I'm been writing. Some things about EPI. ENDOCRINE PANCREATIC INSUFFICIENCY. I might need sleep now. I wI'll get back (love those beatles) online later. Diane

Paul_Howard profile image

Hi Wiki_pie,

I'm sorry to hear that you have been struggling with these symptoms. Unfortunately you won't know a potential diagnosis until you have an examination and receive further test results with the rheumatologist. These symptoms are common in lupus, but they are also not exclusive to that condition.

I hope that your appointment with the rheumatologist goes well in February. I can understand your anxiety during this time and appreciate it is a long time to wait for some answers. I'd advise you to not read up too much until you have a diagnosis. There is a lot of information out there and not all of it is accurate or up to date. It also needs to be remembered that lupus is an incredibly variable condition that affects everybody differently, so if you do turn out to have lupus, it doesn't mean you will experience the same symptoms to the same severity as the cases you may read about.

If you would like an information pack about lupus and how it is diagnosed or if you have any questions or need anything else, you can always send me a private message or email me at paul@lupusuk.org.uk

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