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Discussion Starter · #1 ·
Just found out 4 months ago I have Lupus and really am still trying to understand it all. I have a very bad habit of looking up information concerning things that go wrong with me. I say this is bad because I get myself upset by reading all the information out there that really can be discouraging. Anyway I am looking forward to talking to others concerning their struggles but more than that, their accomplishments over this disease. :) :wink2:

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6,939 Posts
Hello Roxie and welcome!

Haha, I had to laugh about your bad habit and the internet. I really know what you mean. There is so much information out there that we can end up scaring ourselves quite badly.
On the other hand there is very useful info and, of course, this site which is a truly wonderful place :lol:

When looking through this site, you need to be aware that a lot of people on here are, like yourself, newly diagnosed and still getting to grips with the disease. They are also often at the beginning of their treatment, or in some cases haven't yet started. A lot of other people are not yet diagnosed and then there are those that lupus affects more severely.

The important thing to remember is that there are lots and lots of people with lupus who don't come here at all because their lupus is well controlled and they are out there leading busy lives with everyone else.

I can't say that I have an "accomplishment" as you say, but I can tell you that when I first came here I really wasn't well at all. I started treatment for my lupus almost 11 months ago. It takes time to find the meds which suit each indivdual. In my case I had to be put on slightly stronger meds than plaquenil alone. Ten months after starting treatment I suddenly got a lot better - I would say, almost normal - and that's where I am at today. OK, I lack the energy some people have (and that I used to have years ago) and I get more achy bits but I feel normal and can enjoy life much more and, importantly for me, will be going back to work in a couple of weeks. I'm lucky in that I am my own boss, so hopefully I'll be able to manage the balance between having enough work to pay the bills, and not overdoing it.

I am very aware that I have to be careful to pace myself - something I have become quite good at - and to avoid stress. I know that a long day out for whatever reason is going to make me very tired for about three days after so I try to rest whenever my body tells me it needs it. Fighting against it only makes it worse and draws out the "getting back to normal" process.

Feel free to come and ask any questions you have, we're here to help as much as we can.

bye for now,

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1,471 Posts
Hi Roxie

Welcome to the Forum. Im glad that you found us :)

Coming to terms with having a chronic disease and also trying to get to grips with the complexities of Lupus is difficult. Most of us have been where you are right now and are only too happy to help you in this part of your health journey.

The most important thing to remember is how diverse Lupus is. It affects everyone in different ways and while there are some fairly common symptoms, such as joint pain and fatigue, no two people will be affected exactly the same way. The best advice I can give you is to get to know your own body and how Lupus is affecting you. Keep a record of your symptoms and keep yourself informed and up to date about current treatments, etc. Information is definitely power and makes us good partners in our healthcare.

Do you have a good Rheumatologist or a good GP? Sadly it seems that many Rheumatologists dont take the time to explain the diagnosis properly to patients but having a good GP who is willing to listen and learn is worth its weight in gold.

What medications are you on at the moment? If you need any advice or guidance or information please dont hesitate to post and there will always be someone along to share their experience with you. This is a busy site with lots of posts on a daily basis.

Welcome again and I look forward to getting to know you
Take care for now
Joan :rose:

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545 Posts
Hi roxie

A big warm welcome to you :)

I can definitely relate to that!..when I was first diagnosed I read up all the worst case scenarios on the internet & frightened myself so much that I buried my head in the sand for a whole year before I found this wonderful forum.:rolleyes:

as joan & katharine said lupus is very diverse & affects everyone differently..but being a part of this forum now has taught me that knowledge is power & I feel a bit more in control now :)

I hope you enjoy being a part of the forum roxie,there are a lot of very special members here & when living with a chronic illness support & understanding makes a huge difference!

take care..karen x

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462 Posts
hi Roxie,

when i read your post it took me back 1 year, when i went in the internet
and read the same thing over and over again, everyday i sat there with my
computer and went into all the sites and scared myself sick from reading about the worst case scenerios.

I think that because of this i went into a deep depression that i couldnt
get out of. until i found this site and took my friends advise. Lupus is diffrent
for everybody and no two cases are alike as the others said. i learned so
much and it was with the help of everyone here. im no longer depressed
because i do not do this anymore. i thought that i was gonna get everything
associated with this disease. ive had lupus for 20 years now with no major
problems. so keep the faith, follow your doctors advise, take your meds as
directed and youll be just fine:) :) take care Roxie

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1,925 Posts
Hello Roxie, Welcome here and please remember there is a lot of very outdated info out there which takes no account of how treatments have advanced. It does take a while for some people to find the exact combination of meds. for them but it will happen for you.
x Lola

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482 Posts
Hi Roxie and welcome to the site.

It is a great place for information and support.

Yes, you are right, sometimes reading the internet is not a good idea. I think mostly because it always shows the "worst" cases.

This is a great place to start and to talk to other people who have Lupus.

Nice to meet you.
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