View Full Version : new here and and a lil about me

01-07-2008, 06:53 AM
I'm not even sure where everything started. I have 3 children ages 7, 11 and 14. I had pre-eclampsia with each pregnancy. the 3rd was bad (year 2000), I delivered 8 weeks early, was on magnesium sulfate, my kidneys were shutting down. I was sent to a hospital that handled "high risk" pregnancies. The head doctor there was stumped. He said that most times he sees situations like mine, the patient tested positive for Lupus... but not me. I had/have a strong history of auto immune diseases in my family. I thought the doctor was a little off the wall with his thinking that it was Lupus... I was just a "tired and stressed mother" as my own GP so often reminded me...... so, I dismissed it...

fast forward a few years..... my fatigue turns to extreme fatigue, I start having joint pain, swelling/edema, migraines, muscle pain and spasms, my mother makes a comment one day about my face looking like a lupus rash(I said it's just a sunburn). I am olived skinned.. I don't usually burn! I start to really think maybe I need to have my dr look at things closer. my then husband (now my ex!! :D ) treats me like I am a hypochondriatic. I go to doctors and they still act like I am "just a tired mom". Then.... a nurse practitioner runs regular blood work, my liver enzymes were a little high and my white count was low... I test a low posititve for anti-smooth muscle anti-bodies. My dr says I have fatty liver. the white count/joint pain does get me sent to a rhuemy though. Not by the doctor.. but the Nurse practioner!! She runs a bunch of tests and finds that I have a very low compliment C4 level.

I still to this day haven't had a positive ANA. I'm okay with that because. I know that having the DX of Lupus can make it harder to get life insurance. My rhuemy treats me for mild Lupus and believes I have it. I have had low white counts numerous times, I was mildly positive for anti-phisiolipid anti-bodies(sp?), my C4 continues to be low. I respond well to plaquenil. I found out that I have low magnesium levels. When I was pregnant, my kidneys were very slightly damaged and it causes my kidneys to not retain magnesium. When I started magnesium supplements, it helped me quite a bit. My headaches stopped, as did the horrible muscle spasms. I would wake during the night with a charlie horse type cramp. It wasn't just in my legs but in my arms, or even my stomach muscles. I know that the lupus doesn't cause the muscle cramps but, indirectly, it did. The Urologist said that the Lupus caused the kidney damage that causes my magnesium levels to be low. At first my doctor thought I was having MS symptoms because of the muscle spasms and cramps.

My Rhuemy said I have mild lupus and my heart goes out to those that have more severe symptoms than I have. I find certain times of the year I am worse, that eating poorly affects me, and not getting enough sleep. I have to stay away from sweets, get exercise, and take my meds. If I do those things, most days I feel normal and actually can do most things. That is when I start to fail... I start to eat poorly, and not take my meds. I feel like I am better and then I miss a day here or a day there... next thing I know, I totally forget to take any meds. I recently went through this, it wasn't a good time of year to do that. I did all I could to "get through Christmas". Now, I am doing a little better but only after getting back on track with the meds. My new boyfriend must think I am insane at times. We've only been dating since the end of October. There have been a few times since Christmas that I had to say to him, "I just can't do it". I sent him and email with "The spoon theory". He seems to understand! I told him that I just need some time to recoup. It is very helpful to have someone that understands!

Presently I am not working. It is hard financially. I had a job that I loved. I was let go in Sept. I find that if I don't like a job that I am working at, it causes me to flare. I recently turned down a job with decent pay because I knew I couldn't sit at a computer all day, on a phone, and type. I know from experience that it wasn't a good combination for me. My body needs a break from sitting all day. I had a similar job and I did all I could to just stay awake!! Anyways, I start a new job next week but I think it will be one that will work for me. Pay is less but, I have to think of my health first and foremost. I'm still going to college... I realize I can only do so much!!!

01-07-2008, 12:14 PM
Hello MommyKaren :lol:
Welcome to our family! You will find that everyone here understands you and what you are going through. The people here are very informative, supportive, comforting and understanding.
Like you, I currently have "Mild Lupus". I was downgraded to this level after many, many years of severe, active Lupus. Even so, like you, I suffer from many symptoms and I have to be very careful about my diet, exercise, medications etc., in order to avoid a flare-up or avoid having my lupus become serious again.
Your story is one that is quite familiar to many of us and I am glad to hear that Plaquenil is working for you and that your symptoms are not serious at this point. You are right, you must continue to take you medications - even when you are feeling good (in fact, that is the most important time to take them). When you are feeling good and continuing your medications, it is possible that you may achieve a state of remission. So, don't stop taking your medications. The goal, for all of us, is to get to a state of remission.
Everyone here is willing to help you in any way that we can. You will always find someone here when you need them. Remember, you are not alone!!

Peace and Blessings

sick n tired
01-07-2008, 10:45 PM
Hey Mommy Karen,

I had similar problems with doctors acting like the extreme fatigue was on account of the kids. I believed them for a while.
At any rate, welcome.

In Him,


01-08-2008, 10:50 AM
Welcome :)

There's always a reason for the fatigue, isn't there? There comes a point when it just doesn't seem right. I still don't have an official dx but the rheumy is treating for lupus. I tested positive for ANA a year ago, but it is negative now. But, I have low complements. I am still amazed at how different this disease affects us all!! Reading this board has made me feel so much better....I thought I was crazy but so many people here share the same crazy things!! :lol:

01-08-2008, 10:56 AM

I am new to this thing and its been difficult to get a dx but I too am looking like my docs want to treat me for lupus with out having solid info to dx. but some how deep down inside i know.... he threw a bunch of weird really big sounding dx at me that could be still but my money is on the big L!

01-09-2008, 04:50 PM
Thank you everyone for the welcome replies.

The last few days have been difficult for me. On Monday, my sink drain plugged in the pipe... under my basement floor. It backed up into my sinks and dishwasher. I tried to flush it out through the drain the way my ex told me to.... well, next thing I know, my drain pipes were falling apart and yucky sink water dumping into my basement on to the laundry. so, the last two days, I have been cleaning up the mess as I have the time and energy. Sometimes I feel like just going to bed and crying. today I had a lot of energy and got most of it done. I felt good enough to do it but, now I wonder if I will pay for it for the next few days. I wish there was a way to know when to stop. It's hard because sometimes you feel you can keep going. My son broke a window accidently. He was knocking ice off the house and it hit the window... now I have to have that fixed.

I feel guilty that I like it when my kids go to my ex's house. But, I need the break, I know they don't want to go because of the way he can be. He's just a difficult person to get along with. I know nothing bad would ever happen. He just likes to argue..... I hate packing them up and pushing them out the door. But, I really need that break. On average, he takes them every other weekend. Never during the week. So, I have them two weeks straight, no break.. I do have my oldest watch the other two sometimes but it's to go get groceries or other errands...

I'm feel very good the last few days and I hope it continues!!

Thanks again,

01-09-2008, 05:45 PM
Heya Karen

Don't feel guilty about packing the kids of to your ex's, you both need and deserve the break! I have two under the age of 5 who work as a tag team getting into all sorts of trouble (cutting holes in my curtains, blocking the bathroom sink and toilet etc etc) and its like having a weight lifted for a little while when they go to stay with their dad even for just a few hours. I miss them and love them to bits and can't wait for them to come home again but its still so nice to have some quiet time to do 'me stuff'.
Keep your chin up and am always around if you need to vent about the kids! ~sends a bundle of hugs~


01-09-2008, 07:24 PM
Hey Karen...You know thats the problem I'm having with a negitive ANA and I had the pre-eclampsia in my pregnanices- bad case- its called HELLP Syndrome where you liver and such start shutting down. Anyways, just wanted to let you know- I've done an extensive amount of research of this Lupus thing b/c I'm sure thats what my problem is...and you can have neg. ana and have lupus. Its called "seronegative lupus". You can also have inflammation (Sed Rate) and it not show up on tests - they do a C Reactive Protein that will normally show there if it doesnt on the SED rate...you prob. already know this...but if not - thought it might be helpful. Totally get ya on the insurance deal though - i'm kinda in the same boat. read my story. nice to meet you!