View Full Version : Hi everyone :)
01-29-2011, 07:24 PM
Hello, I'm new to the site, although I've been reading the contents for a while now. My name is Yue and I am 20 years old. It hasn't been a year yet since I have been diagnosed with SLE. Exactly a year ago, I had blacked out and was taken to a hospital. 3 or 4 months later I was put on medication. Somewhere between then and now, I have been diagnosed with SLE. I find myself not knowing anything about my body anymore and sometimes I feel very lost. A lot of posts here have reassured me that these changes do happen. I look forward to supporting others while being supported by all of you!!
Hi Yue! Welcome to WHL! Although I am sorry that you are ill I am really glad that you have joined us. If you have been reading then you know that this is a wonderful place with great people who are always here to support you. Only those of us that live like this can understand what it is like to have your own body betray you. I look forward to getting to know you and welcome again to our WHL Family!
01-29-2011, 07:41 PM
Hi Yue and welcome to WHL.
I am sorry that you are feeling lost sometimes, but it is normal.
Believe me, most of us have felt that way in the beginning.
I am three years into my diagnosis and there are still things that throw me off sometimes.
Now that you have found us, you will find it easier to understand.
We are like a family here and totally understand what you are giong through.
If you have questions or if you just want to vent, we are always here for you.
01-30-2011, 04:14 AM
Hi Yue and BIG HUGS for you. Welcome to WHL, the best thing about this site is that we're her for each other. Er understand each other and help each other out. The threads are great to read and the stickies.
Read and ask questions, it really helps to know you are not alone.
01-30-2011, 12:11 PM
Welcome Yue,this forum is fab,everyone here are very supportive and so knowledgeable.I know its scarey,but ask us all any questions and we'll all be by your side.This forum when i first joined i was just going to give up.Now im fighting like mad due to the strength of everyone here.So you have picked a good site.Welcome.Catch up with you soon.
love n gentle hugs
01-30-2011, 02:03 PM
Welcome to the WHL and it will be lovely getting to know you also and like you stated from reading the posts this disease can make one day after another different in many ways.
Such alot of our member's have learnt to cope around the condition and other's not so good and that includes myself but we're all here for one another but if you need to vent on or cry we're all here for you.
01-31-2011, 12:55 PM
Thank you everyone for the warm welcome, I'm definitely going to post here on a regular basis, since I stay home mostly due to exhaustion that seems to last forever, no matter how much rest I get.
... Which reminds me, I have a question. When I was given prednisone at the dosage of 60mg, and after a few months it was reduced to 40. I was on 40 for a long time because I had lost my insurance. During that time I think I developed depression-like symptoms, and the everlasting list of side effects that changed my appearance didn't help at all. But also, when I starred prednisone I had all the energy in the world, I didn't know what to do with it. But now, along with the depression, I am fatigued and apathetic. I can't seem to get motivated or excited about anything.
I was wondering if these symptoms go away when you stop taking prednisone? I know that while decreasing the dosage after being on high dosage for a long time, you can go through withdraws... Does that feel like what I'm feeling right now, and when the body is able to function without he medication, would I start feeling normal eventually? I know I should probably speak to my doctors but I have not yet found a good rheumatologist, and my primary doctor seems to lack understandIng of this disease. I'd greatly appreciate your response!!
01-31-2011, 01:19 PM
I hope you've been feeling ok today? i don't know about the presidone but someone will answer very soon as there's alot of member's on the site taking it, i'm surposed to start plaquenil this week hopefully.
The exhaustion is an every day basis and the Disease can cause depression but i hope you don't get that to bad mate but all the symtoms your having are'nt to do with the presidone it's to do with the Disease itself, when you have a day where you feel more active go for it doing stuff, that's what i've found because when i'm down it's a no go situation with me and i'm not used to being like this i find it so annoying.
You at least need a good Rheumo, mine cuts info short but i do have a brill GP.
All the best mate with some else answering you.
Luv Terri xxx
I hate to be the one to break it to you but chronic fatigue is a symptom of Lupus. Your body simply adjusted to the amount of steroids you were on and, most likely, everything would get worse not better when you came off of it. Depression is also a common ailment with Lupus. The meds and the disease both cause depression. The Lupus attacks all parts of your body and the brain is not exempt. Please remember that I am not a doctor and I can't give medical advice. I only am telling you what I have learned from experience, reading and listening here.
02-02-2011, 08:40 AM
I hate to be the one to break it to you but chronic fatigue is a symptom of Lupus. Your body simply adjusted to the amount of steroids you were on and, most likely, everything would get worse not better when you came off of it. Depression is also a common ailment with Lupus. The meds and the disease both cause depression. The Lupus attacks all parts of your body and the brain is not exempt. Please remember that I am not a doctor and I can't give medical advice. I only am telling you what I have learned from experience, reading and listening here.Hello Mari,
All this info your giving out mate is smake on the dot, even though your not a doctor but me alone it gets me right down.
Luv Terri xxx
02-02-2011, 03:01 PM
Hi Yue, And welcome!! Your'e never alone here at WHL! Please dont feel alone,
My body dose something different to me nearly every day or so. Just as i get use to 4 thing's
and how to help it or ease it several more pop up. So i dont know my body any more either
i just kinda go with the flow of it and when bad enough or i dont know how to treat it
i go see my reummy, dermatologist or family dr.
Gentle Hug's to you!! Hope you are feeling better!!!! Diane,