Getting a diagnosis of lupus will indeed take time to sink in. It's not something you get used to overnight, even for those who have waited a long time for a diagnosis and who are, in some ways, relieved to finally have a name to put to their symptoms.
We have a wonderful forum here, with fantastic, supportive and caring people who will all be here to help you on your way and answer any questions you may have.
As you read through the boards just try to remember that most of the posts that you'll read here are written by people like yourself who are newly diagnosed, or the "not yet diagnosed" and also those who the disease affects more severely. Just to say that you shouldn't be frightened by what you read. There are loads of people out there who have lupus but who are far too busy living their lives to come and spend time with us here.
How does lupus affect you? Did you have difficutly getting diagnosed?
The time after diagnosis can be very confusing despite the relief of having an explanation for the poor health. The first thing is get an idea of how you are being affected by lupus, because each person's lupus is slightly different and there is a huge difference between those who are not so severely affected and those who have major organ involvement.
Obviously, symptoms are the main indication and might be the only ones but there are other possibilities such as kidney problems which might not be evident.
There is an overwhelming amount of information available and a lot of it won't apply to you and probably never will. The more difficult cases are usually described. So don't panic and imagine the worst for yourself.
I suggest getting your test results and learning to understand them. You can also check that all the essential testing has been done. Sometimes very basic tests like urine can can be omitted. When you are well informed you will be better able to talk to your doctor - good doctors appreciate informed patients.
Most of our members who are already diagnosed have ongoing problems or new ones, or haven't responded so well to the medications, so they are not typical of the lupus population in general. Those who are living well with their symptoms well controlled do not usually post regularly on forums because they have no problems.
Let us know how we can help you. There is a huge amount of good information about everything to do with lupus and lots of support and understanding.
:welcome: :wavesmile: Glad you found this site, and I hope you will find it helpful and supportive. I have and it has been a life savor. Feel free to look around, comment and ask questions or even vent anger, confusion anything. We are all here to support each other and each of us triumphs when someone else does, and we can be very supportive when someone is going through tough times.
:welcome: to this fouram, which i know you will just love, as everyone is so help full, so anything you need to know ask away, its the one place i know you cxan come if your happy sad, or just need someone to off load on, and chat is there to help too
You will soon learn how to cope with whatever the disease throws at you. Do you have a family who can understand how you feel? Do you need to work? It would be good to know you better.
I am in the Uk.
just wanted to say hi, ive recently been diagnosed (kind of) with possible lupus and definately sjogrens and found everyone here to be really kind and helpful. It still hasnt really sunk in with me and i have my good and bad days trying to come to terms with things and educate myself more about my condition.
coming here to ask questions and opinions or just pour my heart out has been a godsend and in addition i have received some very good advice!!! I was very frightened and confused and still am to be honest but everyday is getting a tiny bit easier!!!
welcome and take care annie
take care annie
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