Hi, I am new here and has been recently diagnosed with lupus

[brianandminas mom]

I am new here, and very scared. But still trying to be brave...Desperately trying to find someone that knows what I may be going through

[x_claire_x]

Hiya...it is scarey to start with..alot of information to try and understand and it is difficult to find the correct info...indeed the first thing most do is go on the internet and cry buckets over incorrect information that is out of date and misleading.... I did it when I was diagnosed with MCTD which is a mix of lupus, schleroderma,polymyosis and hypothyroid in my case!!!!....anyway the worst time for alot of us is pre diagnosis..once you know what you are dealing with you can formulate a plan of action with your drs and I feel better now (two years on) than I have for ages, though I still struggle to accept things and pace myself at times, which is very common on here too. It is a rollercoaster of emotions and physical symptoms, but on here we do understand as only those who are on this journey can..so do feel free to write and chat and vent and also celebrate when things are easier.... Welcome to the forum where you will find kindness, humour, wisdom and brilliant information from those who are alongside you. I have learnt more here than anywhere else about this disease. I hope you were diagnosed early and that you are under somebody with good knowledge and lots of care...take your time to digest things and accept that it will be a little up and down for a while whilst you find out what works for you...it took me over a year to feel I was making some progress.........take care and get back to us whenever you need to XXXX Claire

[Maia]

Hello and welcome to the site. It is a very scary time when you've just been diagnosed especially if you were surprised (but also even if you've been struggling with symptoms for years without diagnosis!). I was quite surprised by my lupus diagnosis and can still vividly recall going back to my car and breaking down after being given the news (after managing to hold it together in the doctors office!).

In any event, please be reassured that life with lupus can still be pretty good. Things can and probably will get better. You will be placed on medication(s) that should help, although it can take a while for some medications like Plaquenil. We've had several members here that have lived 40+ years with lupus, and for the overwhelming majority of us diagnosed with lupus --- we have the same life expectancy as the average person.

I hope this helps... please let us know if there is any specific questions you have about how lupus is affecting you or medication questions.

[lazylegs]

to the site.

Not knowing exactly what is ahead for you can be scary. The only thing I can say is doctors have a few more tools to work with now than they did in the past. It may take some trial and error to find what works for you though.

Don't be shy about asking questions. Your question may help others as well as yourself. As you can see we have many members but also many more shadowing the site looking for answers also.

I hope to meet you in chat someday soon.

Take care,
Lazylegs

[KarolH]

Welcome to the site, glad you found us here.
You have been given great advice so far from the others.
Read all you can about your new diagnosis, Knowledge is Power.
Come here to find support and great information from an awesome group of people.
Please share more with us, if you don't mind so we can get to know you better.
Hope to chat with you in the chat room sometime.

[Pink Pearl]

Hi and welcome to the board. Yes, as the others have said, it can be scary to be dropped a diagnosis when you most likely had never heard of this goofy disease.

Something to remember, there is life, in, with, and through lupus. It will be a different life, but you can still have a life.
At the beginning, there is so much to remember. Many find it helpful to keep a journal noting your flares, fevers, anything that is happening. Take pictures of your rashes so you are able to show your doctors what you are going thru. Give copies of these to your doctors so they are all on the same page for your care. It is SO important for your doctors to all work together and be a team.

With the HIPPA laws here in the US, you may need to sign release for the doctors to be able to communicate with each other. It is worth it to have them working together WITH you as a helpful team.

As the others have said, there are a LOT of us who have survived this not so welcome companion for many years. I'm at about 52 years myself for survival. I wasn't diagnosed until I was 35, but showed the first symptoms when I was 5. Treatment now has come so far.

It is important for you to rest when you need to, and don't feel guilty about it. At the beginning your doctors don't have your meds balanced, and you will feel more up and down than you will later on when things are more balanced. So, hang in there, we are here when you need us, as later on, you will help new patients coming in. With as many people here, most likely someone or more, has gone thru a similar issue as you will have that day(s). It is so important for you to take care of yourself. If you are having problems with summer heat, let your doctors know. It is important for them to be kept up to date.
Sally

[pippa10]

Hi and welcome to the site as the others have said its a good place to be. Hear you'll find support, information, and friendship. It can be scary when first diagnosed but in time it sort of becomes just an other part of life.

I can remember standing at the counter in my kitchen looking at all the meds I was on and feeling overwhelmed. I was thinking I'm never going to be able to go any where ever again with all this medication to take with me. Believe my I go where ever I want and my meds are no problem to take with me.

It was the same when I was dx with copd and all the inhalers I had to use and do you know what I've adjusted to that to. So you will adjust and it will be come a part of life with good days and bad days. Take care and rest as much as you can go easy on your self and learn to be your own best friend. So far I need to take my own advice on that. Pip