View Full Version : New to Lupus

03-16-2008, 01:54 PM
Hi! I'm Sheila..I was finially diagnosed only about a week ago. This has been in th makings for about 5 years, feeling like I was going crazy because every test came up neg. They finally said I had Fibro..which so many doctors think it's all in your head, sometimes I so wish the he could have the pain and issues I feel day in and day out. I was told by a nurse 2 weeks ago I tested pos. for RA so started to due some more research, I have been tested for RA at the very least 6-7 times in the last 5+ years.
Went to see my doctor because the pain was unbearable, I mentioned something about the RA and to my amazment, he says you don't have RA you hae Lupus.... :cry: I'm like WHAT!!! That's not what your nurse told me...anyways switch rheum, he wanted me to see to some one else. So here I am now trying read as much as I can before I go to see specialist end of April. My symptoms are getting progressively worse at a lightning rate.
So, something new is happening to me just wanted to know if anyone else has had a similar symptoms. I all a sudden get very light headed as if to pass out-I feel shaky as if blood sugar is low(but I stopped and ate) but physically I am not shaking if feels as if everything under my skin is jumping- it makes me very scared. It has happened 3 times in last 2 days. Anyways...just needed someone to kinda talk too who kinda knows what I am going through. :?

03-16-2008, 10:04 PM
Hi! I'm new here to. I was diagnosed about a month to a month and a half. I got really sick with joint pain it felt like a really bad flu. I did get that shakey feeling as if I needed to sit or I'd pass out. It would get worse if I tried to push myself to do things. I was mostly in bed for about a week due to my symtoms. This site should be very helpful there's alot of information on the symtoms forum. I hope you start feeling better soon.

03-16-2008, 11:37 PM
Hi Sheila,

Welcome to our family. The good news is you have a diagnosis; though I am sorry it took so long. Unfortunately, many have experienced the same as you have. Have they placed you on Plaquenil? Make sure you get a Opthomologist plaquenil baseline prior to starting Plaquenil.

Many of us get light-headed, I have noticed it when I push myself too much. Don't push so hard, keep stress at a low minimum if possible. There is an excellent book called Lupus for patients and families written by Daniel J. Wallace. It can be found on ebay or amazon, and through the local library. I suggest purchasing it since it covers so much and different areas of this disease.

Again, welcome and take care.

Faith 8)

03-17-2008, 10:03 AM
Hello Sheila...

Welcome to a little corner of cyberworld that Saysusie created for us. Little but huge on compassion, empathy, knowledge...and all that good wonderful stuff we have inside of us...

I've learned not to listen to the nurses...they have left me in a stupor :shock: on many of occasions. Do they form their own opinion or do they parrot the doctors..I don't know, when I asked they all point fingers.

Tomorrow I have an appointment to call them out. Incompetent or just a chaotic office..either case it will still be my last appointment...this was with a GYN.

Do you eat regularly? Sleeping? Overexerting yourself? Are you on any medication? Anxiety? Worrying about tomorrow? Many things can contribute to being shaky and light headed.

For me medicine makes me lightheaded, especially Plaquenil. I get the whole body inside twitches out of the blue. I call it my armies (antibodies) are out on heavy duty patrol...

Do share what meds you are one, or not..sugar,,,exercise..and etc.. and maybe I can or someone else can be more specific and helping you with your symptoms.

Hugs..and welcome, read about...lots of wonderful, kind, gracious people to meet here...


03-18-2008, 02:26 PM
Hello Sheila -

Welcome to our little roller coaster of a world. Sorry you have to come along for the ride. I hope you find some comfort here.

The "5 years to diagnosis" coaster is a most popular ride at our little not so amusing park, followed closely the ever popular tilt-o-whirls: "I think this may be all in your head" and "I must be going crazy." And of course, we never tire of that favorite old merry-o-round, "I hurt today....But you don't look sick."

You are not alone.

Information and knowledge will empower you to take care of yourself. There is a wealth of both in this forum, as well as love, laughter and support.

Take care. I hope today finds you feeling well.



03-18-2008, 03:24 PM

How did your appointment go today?