View Full Version : hello everyone, iam new!!!!
01-29-2009, 10:28 PM
:P hi everyone, iam new to this group, got newly diagnosed in cot,2008. one question for all of you , my first signs of lupus was a rash on my chest, then on my sclap, then face.also a general feeling of crappy. is this the norm?? anybody with the same signs?? :D
01-30-2009, 12:33 AM
Hello cynda Rae and Welcome.....
Lupus affects every single person differently and we each have our list of symptoms.
When I was very first diagnosed, my symptoms started with a general feeling of yuckieness, just like you describe. Sort of like having a flu every morning. I had low-grade fevers, sore throat, aching head, extreme tiredness, and joint pains that started mildly in my fingers and wrists only. I was going to Court Reporting School, and I thought the aching fingers was because we were on Christmas Break from school and I hadn't been using my machine. Then they got stiff and began to swell, and hurt worse and worse with each passing day. I ignored it. One morning I woke up and couldn't make fists with my hands. I could not close my fingers because of the pain and swelling. I was only 18, still living at home with my parents. My mom noticed, asked me about it, and immediately took me into the family doctor. My doctor suspected Lupus, because he had just diagnosed another young girl a few months previous, so he ran some tests for Lupus. He didn't say anything to my Mom and I, just told me to rest and come back two days later. Two days later, I had Lupus. I had tested positive on every test he ran. He tried to break the news gently. I was devastated! I didn't understand. My mom was equally devastated. My doctor had me try Aspirin and bedrest. That was sort of the initial treatment back then (27 years ago). When my stomach could no longer tolerate the aspirin, I was put on Prednisone. I developed the buttefly rash on my cheeks and nose within a few weeks. I never did have it anywhere else, though.
So, in answer to your question. Yes. Your rash all over, and the general crappy feeling is very normal to Lupus.
I'm so sorry you're feeling terrible, and having to deal with a new diagnosis. :cry: Does your doctor have you on any medication? Are you getting any relief from your symptoms throughout a day?
I'm wondering if you've looked through the Forum and seen the Sticky post for Homecare 101, I think. It's by one of our members, Oluwa. It's an excellent reference for the things that can help you survive this disease day to day. Things that are important to pay attention to in order to keep yourself as healthy as possible.
I hope this has helped you some. I'm certain others will be along to greet you soon and share their insight.
01-30-2009, 03:13 AM
and welcome to the forum :wink:
I went to the drs with summin completely diff, then as i was walking out i asked what my blinking rash was on my face, i was pulled back into the drs and she left and came back with all of them as they tried to diagnose it, she said lupus, took alot of symptoms ive had over the years and diagnosed me b4 i went for tests etc, 4 months down the line after being thrown from pillar to post i got it confirmed i had SLE, soo there we go thats my story in a nut shell, every year around april time when the sun shows its self i get a lovely rash (malar) across my cheeks and nose, so yes in answer to your question,
take it easy,
btw you can ask any question you like these ppl in this forum are pretty amazing one of the mods i swear is like a nurse or summin she knows soo much :D
only thing they cant tell you is the lottery numbers :(
01-30-2009, 03:09 PM
Welcome cynda rae
My first signs of trouble started when I was in my late teens. Butterfly rash they call it.
My doctor at the time identified it and said we'll have to keep an eye on you. He did not say that it was lupus related.
I've had the butterfly rash ever since. It fades off and flares up. I go through periods of fatigue. I just thought I was lazy :lol:
I can sleep all day and all night with no problems. Any place any time.
I've developed a few more interesting rashes ... lupus related.
Now I'm 48 yr's old...with a raft of other lupus related goodies, but still no diagnosis....go figure.
My mother had lupus and my sister is diagnosed....me...I'm just sitting in the waiting room waiting for someone to get a clue.
01-31-2009, 07:33 AM
so, that must be where you came up with the name sits_inthe_corner ?
01-31-2009, 10:25 AM
:twisted: actually scubagramplit
I spent ALOT of time in the corner growing up...I've gotten quite comfy here.
I just wanted to welcome you to our group. Please, make yourself at home!
01-31-2009, 01:00 PM
Welcome aboard, CYnda!
My diagnosis came after feeling I had the flu and it just would NOT go away. Achy, fatigue that would not quit. Good doc, VERY good doc, he did the right tests during the first month of trying to figure it out. And then sent me on to a rheumy right away.
I've never had the butterfly rash - sometimes rather glowing cheeks, but never the rash. Mine has been all aches, pains and fatigue. Some days good, some not so much. Oh yeah, and sun sensitivity...thus the moniker! 8)
02-02-2009, 01:52 PM
I just felt tired all the time, and was always getting sick with one virus or another/immune system was depressed. I was diagnosed initially from a history of my symptoms, plus the butterfly rash was on my face. My Dad had Lupus/Dr. then knew it ran in the family. I believe, my grandmother on my father's side had it, but she was never officially diagnosed with it. She just seemed to me to have symptoms of it, looking back now. Anyway, back then, it was really hard to get a diagnosis of Lupus. It was not commonly diagnosed. My Dad was really lucky to get diagnosed in the 1950's by a specialist, who recognized the symptoms, including the discoid Lupus on his face. I think the Dr. who diagnosed my Dad was a dermatologist.
02-02-2009, 03:38 PM
02-07-2009, 07:34 PM
I am 40 years old> I was diagnosed in October 2004. I was tired all the time.I did not even know when my kids went to school or was home. My husband had to take care of them.I believe mine goes into remission. But i have been doing pretty good with mine for quite awhile. I am looking for some one to talk to about lupus. I really do not have any friends.
02-07-2009, 07:39 PM
Just to say hello and welcome.You do have friends now you have us on here. I am not good at the advice you need, but all i can say is look around the site and you will find answers there. Also if you look in Louri's Lounge there are many questions answered in there too.
If not stay put because everyone here is lovely and they will be along soon and i am sure will welcome you and may also be able to answer your questions. They are very knowledgeable :)
You keep strong and so glad to chat to you.
02-08-2009, 10:59 PM
Hello Ritawaterman.... :D
I just caught your post mixed in here. I wanted to say welcome...I'm glad you decided to join us.
You should probably go to the "New Members, Introduce Yourself" section, and post again. I think a lot of members have missed reading your post because it was on Cynda's post. I noticed that Angel caught it and replied.
I'm sure there are many others who would want to welcome you also. :D
Keep posting, you'll find you are not alone any longer.