Hello - I'm new to Lupus too ...

Hi Everyone

I'm newly diagnosed with SLE Lupus, but apparently have it mildly. I have had a bizarre range of syptoms over the past 4 years or so, with the most apparent being the chronic fatigue, joint pain, back pain, loss of appetite, loss of interest in life, and just generally feeling like s**t, Can I say that?

Every few months I'd go back to the Dr and say "there's still something wrong with me - do something!". She'd do blood tests which came back with nothing. I was tested for a variety of things including thyroid. I forgot to mention that I am also menopausal, which didn't help one little bit! Other symptons included sharp jabbing pains in my shins and legs, bizarre "spot" pains on my legs (like I'd been hit with something, but there were no marks or bruising), sore fingers/joints, feverish, a stabbing pain through my torso (like I'd been speared), and sore eyes. I do believe my speech and memory have been affected to some extent, but that has been ignored. Sometimes I'd wake up with back pain in the middle of the night. Most mornings I would wake up with pain and an odd feeling in my hands, extending up my arms.

Then more recently I had burning in my feet, burning around my wrists and mouth ulcers. It was at that point when I went back to the Dr that she tested me, and the results came back ... In November, I was diagnosed with Lupus.

I was devastated! Actually, I was angry that it wasn't discovered earlier. But also relieved that I could put a name to the thing that had taken over my life. I researched on the internet, and read as much as I could about this thing. I had heard of Lupus previously through an associate of previous work, but had no concept of what it really was.

I still managed to work full time, but I literally crash by about 2 in the afternoon, struggling to the finish line at the end of each day. I've been in a new job for 6 months now, and I work around 30 hours a week, which suits me just fine. My boss knows of my condition, but I don't belive he knows exactly what it means. One thing that bothers me is my eyes. By the time I get home from work, my eyes are quite irritated and sore, and have gotten noticebly worse in the past 6 months or so. I'm not sure if this is related to Lupus or not. I get home from work and pretty much just lay on the lounge and watch TV. I go to bed about 8.30 and a really late night for me is 9.30! I try not to over-do things, and I try to eat better than I have in the past.

Today I accidentally came accross a forum, in the USA. Then I found this one. I read others stories and questions and nod. I definately can relate, and I don't feel so alien now, and I have still managed to keep a sense of humour thoughout.

Anyway, that's my story. Thanks for listening.

Hi Poppy

Thanks for your reply. I will get my eyes checked and let you know how I go.

I'd like to apologise to everyone for getting this post in the wrong place! I was pretty tired when I did this!

Meanwhile I'll keep reading and listening.

Hey there Merlin,
Welcome to the message board. I have the sjrogens and Lupus.
I have found if I can work a quick nap during the day, which I do, during my lunch every day, it does wonders. I too still work a 40 hour work week. The nap really helps, I eat my lunch, then nap..
Dont apologize for posting wrong, We are glad to have you aboard.!! you might want to check out the forum on ... butyoudontlooksick.com it too has alot of intersting stories. and maybe can answer some of your questions
Melody

Hi Melody

I did read the post here referring to the spoon analogy the other day and read that story. I didn't pay too much attention to anything else. Sometimes it's easy to get a little sidetracked when looking up info on the net! There is so much information out there, but I find people's personal stories and experiences are most valuable and helpful. It's being able to relate that brings comfort.

M