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Discussion Starter · #1 ·
I have posted a few different places, sorry about that, I am new to this site, and very anxious. I need someone too talk too, I think I am dying. As I have said before, I have a positive ana, my antinuclear is 1:640, my pattern is centromere. I have alot of joint pain, they have ruled out reumatoid. I get severe sun poison, and I just started getting the raynauds, white numb fingers when I go into the cold. My appointment with the arthritis doc is not untill the end of april, how do I survive untill then, emotionally I am a wreck, all I do is look online for an answer. I guess I am looking for someone too tell me that it is not lupus, but it is not looking good....
 

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Hi again Connie,

It is quite normal to feel shattered at the possibility of having lupus but please don't think you are dying. It is extremely rare for people who have lupus to die from it and when they do it is from very rare complications and not taking their medecine.

Looking online for answers is not always a good idea as you can scare yourself quite badly doing that. In fact, if you type in a load of symptoms the PC will proabably throw back at you that you have several fatal diseases when you don't.

I am "only" 35 but have had lupus for around 9 years now (only 1 diagnosed) and have lived with it "all my life" as my Mum has dermatomyositis and lupus. She was extremely ill when they first discovered what she had, but, despite that she is now a "healthy" 70 year old who has far more srping in her step than many I know and who doesn't suffer from half the ailments my Dad has (even though he was never ill a day in his life before).

Please take heart, there are literally thousands of us who are members of this site and so many who are very well depsite their illness.

hugs to you :hug:
Katharine
 

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elisabethm
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Scared

Hi connie i think at the moment you have just got your self scared as Katharine said when you go on diffrent sites they all have something to say and yes it is scarry i was diagnosed by one rhymy with lupus then at my last appointment another doc told me he was not sure if that is what i have i also have all the symtoms of lupus and a lot of other things wrong with me aswell what age are you and where do you stay are you in the UK if you want you can email me just post on the board and i will get back to you with my email address but try and stay calm easier said than done speak to you soon elisabeth
 

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Hello Connie,
Try to come into the Chat room sometime. Please don't despair, I have had Lupus for over 25 years and I am still around.
x Lola
 

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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
 

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:) Hi Connie, don't let yourself get so upset. Lupus is called "the disease of 1,000 faces." because that is how many diseases imitate lupus, and that is why it is so hard to diagnose it. There are people on this board that are on
meds for yrs., but still don't have a diagnosis. It is true what everyone has said, you can live a long life now, with lupus and the right combination of meds. Make a list of your symptoms for your dr.Lupus is not diagnosed by blood tests, they are just a guideline, a lot of other factors are involved too. Stay on this site, we are here to help and support you. you may PM me also, if you wish.:wink2:
 

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Discussion Starter · #9 ·
Thank you all...

I would like too thank everyone for helping me through this difficult time, everyone of you have made a difference. I actually got out of bed today, the motrin helped. My appointment with the reumaltologist is the end of april, we will see what he says. I think the hardest part of this is the unknown, the experience and knowlege of everyone on here has really been a life saver, thanks again...
Connie
 

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Discussion Starter · #10 ·
Thanks you so much Clare, you really have helped me, it is amazing how a stranger can help you so much, thanks for being honest with me, I needed that, and thanks for you understanding of me being new here, and not understanding how this site works, I hope too talk to you real soon again...
Thanks Again,
Connie
 

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Dear Connie, Well Done for getting out of bed and feeling more positive.
If you do have Lupus you will soon learn a lot about managing your condition. We have all been there.
x Lola
 
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