Hello everyone

[Lilix]

Hi everyone. My name’s Lilly, I’ve just been diagnosed yesterday with Lupus, the systematic one. I still don’t know the right terms yet and English is not my native language. so sorry for that too. My doctor said: minimal symptoms and good prognosis. But, im still so scared. At this moment, i have the rash across my face, a lot of pain in my knees and the fatigue. And it’s only the beginning. It will get much worse right. Theres so much different info on the net, i dont know what to think. Because its the systematic one, this means that it will attack my organs, right? Regardless if i eat well and exercise, it will still attack them right? Im sorry for rambling. Please help me

[Penguintaz]

Hi Lilix,

Info on the illness is so varied because it affects people in different ways and different severity.

With the right treatment and a healthy life style your organs may always be safe and healthy but obviously it's not a guarantee even if you were a perfectly fit person. Doctors know more about Lupus and the outlook is a lot better, please don't worry too much with the right support you can live a long healthy happy life X

[Paul_Howard Partner LUPUS UK]

Hi Lilix,

Welcome to the LUPUS UK Community Forum. I'm really glad that you have found us and hope that this will be a helpful place of information and support for you.

Getting a diagnosis of lupus can be scary, but I hope that we can help to reassure and comfort you. I would try to encourage you not to read too much about lupus online because not all of the information is reliable/up-to-date and the case studies you read are often not representative of the illness as a whole. Whilst it is important to be aware of the potential symptoms of lupus, it is essential that you understand lupus varies significantly in its presentation between individuals. No two people with lupus have exactly the same set of symptoms (which is one of the reasons the symptom lists can be so long!). Most people who are diagnosed with lupus will never have any organ involvement and are able to manage their symptoms quite effectively by following their treatment regimen and perhaps making some small adjustments to their lifestyle (such as protecting themselves against UV light, eating a healthy balanced diet and participating in regular gentle physical activity).

Lupus does not necessarily get worse as time goes on, in fact there are some people who experience prolonged periods of remission in which they have few or no symptoms and may even be able to withdraw from some medications under their doctor's supervision.

I think it may be helpful for you to chat to some people who have been living with lupus for a while, so that you can get a better understanding of what life with the disease can possibly be like. This forum is one place to do this, but you may also be interested in attending a support group meeting. If you are in the UK, you can find your nearest group at lupusuk.org.uk/regional-gro...

We also have a network of trained volunteer telephone contacts who have lupus. If you would like to chat to someone else in this way, please let me know and I will be happy to send you some details in a private message.

If you would like more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

Please keep us updated with how you are getting on. Also, don't hesitate to let me know if you need anything or have any questions.

[Lili18 in reply to Paul_Howard]

Hi Paul,

Thank you so much for your words. It is very kind of you to explain this whole issue to me. I hope what you said will apply to me. The organ failure is the scariest, i have two small kids. You can imagine. I feel so guilty for having lupus. Unfortunately, i cannot attend support group meetings because the place i live in, does not have any. But i would appreciate the contacts of the trained telephone volunteers you mentioned. Thank you so much

[Paul_Howard Partner LUPUS UK in reply to Lili18]

I hope that with treatment you will be able to control your lupus effectively and manage well. Have you started any medication?

I will send you a private message with information about contacts now.

[Sara_A]

It’s not definite that ur condition will coarseness from what u have right now, some people have mild sle with no organ involvement. Mild - still doesn’t seem mild to us tho with the fatigue and joint pain!!

With treatment the symptoms u have right now may really improve and u may feel so much better.

So please don’t think that u are going to get really bad and organ problems because that’s not always the case.

Try not to panic and try to stay positive.

I have been diagnosed about 18 yrs I am 39 yrs old and I still only have the milder non organ involvement sle. I’m on a lot of meds for various symptoms that come from the sle (and I have antiphospholipid syndrome too) . But that’s not to say u will, each case is very different

Take care and ask any questions to us all u like!

[Sara_A]

Sorry that meant to say ‘change from what it is right now’ !!

[JenniferW]

Hi Lily,

It's a terrible shock being diagnosed and a lot of the information you find online initially can be quite out of date and scary.

Only some systemic lupus sufferers have organ involvement - I don't and lots of other people don't.

There are a lot of treatments available these days. If you take the medication when it is prescribed then you will really help reduce the impact.

Also you will find that it comes in 'flare ups', meaning it gets worse at times and then better. After a while you will figure out what triggers it for you (often stress, and sunlight) and learn how to avoid these triggers.

There are some good books available, have a look and pick a couple that you like. But don't believe the ones that claim they can cure your lupus by changing your diet alone. A good diet will help a lot with your energy levels and a few people find that a particular food upsets their body and avoiding it helps stop the flare ups, but don't try fixing your problems by diet alone, take the medication!

Good luck

Jenny