Hello Connie
We know that it takes time to grasp how the forum works so don't feel bad about it.
Two important things you need to do right now. First, ask your doctor for some sort of pain relief. Describe how bad it is and how it is affecting your life in practical terms, and make notes about when it is worse, any pattern to it. For example is it worst in the morning and for how long. Decide on a scale of 1-5 or 1-10 to compare pain levels You will need this for the rheumatologist anyway.
The second thing is to STOP looking up on line - there is such a thing as worrying yourself sick. There's some useful and accurate info online and tons of incorrect misleading useless garbage. When you start finding out about lupus and similar diseases, it is hard to distinguish which is what.
You are focusing on lupus but maybe you don't have lupus but something in the same group of diseases that doesn't usually have any very serious organ involvement. To be blunt, you don't know what you are looking for- nobody could at this stage - and certainly won't find any real answers there.
Even if you look only at the excellent sites there's an overwhelming amount of information most of which will never apply to you and you simply do not need right now. You can get all the info you need at this stage right here, on the information section of the site, and on this forum from people who have spent years finding out about it and have lots of personal experience.
These diseases are complex in themselves and affect people very differently: they have different symptoms as different parts are affected and what is slight or mild for some people might be very serious in others and with all the in between.
Many people with an SLE diagnosis might have mainly arthritis, fatigue, skin problems, a few blood abnormalities from time to time, like anemia. Medicines and life style changes keep it well under control and they lead pretty normal lives working and playing and live as long as anybody else. There's no reason to think you won't be one of them. They do not usually post on forums. It's the serious and complicated cases of lupus and those that dont respond to the usual medications, that we tend to hear about and that are written about.
Yes, lupus can be potentially fatal in some cases and that's why early diagnosis and the best possible treatment are important to get it under control. Apart from that it can cause intense suffering and have serious effects on our lives
But there is no point worrying until you know what you need to worry about. After diagnosis there is a worry factor too, for most of us, until we find the right medicines and get to know our disease and have found good doctors and got used to the idea that we have a chronic and unpredictable disease with ups and downs. You get to know what you need to worry about then too.
Worry is normal and healthy. Waiting for diagnosis is an especially worrying time. If you feel that the anxiety is right out of control you should seek medical help for that too and start learning some destressing strategies which will stand in good stead for life.
Try to find some positive activities preferably ones you enjoy and can really focus on, to take your mind off things. Try to take some regular exercise even if it's only a half hour's stroll. Allocate a limited time to visit here.
We have a live chat room, see at the top of a page, which is a good place to have informal friendly contacts. You can be in chat and reading the forum at the same time. When somebody comes in you hear a beep and you can get back to chat .People will know you are in chat just as you can see if anybody's in there and hopefully will come in to see you. Some times of day are better than others
I'll keep an eye out for you but I am in the UK so I miss out on USA evenings.
Live in Hope !
All the best
Clare
