Lupus diagnosed a week ago

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Jul 2011
Total Posts : 2
   Posted 7/17/2011 3:14 PM (GMT -6)   
First time posting here. But I need a place to connect.

After 2yrs of being all natural and the month before I woke up with this disease I had been fasting and detox for a month. So to say the least I'm not happy with all the time and energy I put in money and time wise with the disciplines of being green and feel like it didn't do anything.

The good I guess is a lot of the advice for changes I've been getting is stuff I've already put into practice over 2yrs, so there should be less adjustments there. But exercise is going to be a challange, as I was a runner and surfer before and now I will have to be a walker - but still limited on time because of 10hr wk days and sleeping 16hrs on days off. I also have to be in bed by 6pm because of getting up at 3:45am for work. So work days are shot, only 2-3hrs to cook, clean and shower.

My other frustration lies in that I didn't even take an asprin or any over the counter med and stayed away from soda - and now I'm at the mercy of the medical system to survive. My shortness of breath continues and some days I wonder if I will be alive next week.

New Member

Date Joined Jun 2011
Total Posts : 8
   Posted 7/17/2011 4:59 PM (GMT -6)   
I feel for you! I am just diagnosed with Lupus and auto-immune hepatitis, and never drunk soda or eat pizza or fast food, didn't really drink, stopped smoking and now this 15-20 pill per day, grrrrr!!!!! Sometimes I wonder are we just better off living life to the fullest since it all hurts any way! devil
Some people are lazy sitting in front of TV cause they don't want to do anything and most of this forum people would do nearly anything for a bit of energy to do things!

are you taking anything for your breathing? I do fell lately that I cannot sit in the room without open window, will start to get dizzy, I think its because of low RBC, do you know are you anaemic? Or is it your lungs?

Dx: Glomerulonephritis, Low Kidney function, GERD, Nutcracker esophagus, Systemic Lupus (dx 2011), Auto-Immune Hepatitis, Anemia (low ferritin, low RBC)
Surgical: Two kidney surgeries with partial nephrectomy, cholecystectomy, multiple puppiloma/fibroma -ectomies
Meds: Plaquenil 400mg/day, Nexium, Galfer 600mg/day, Solpadol 120mg/day-180mg/day

New Member

Date Joined Jul 2011
Total Posts : 4
   Posted 7/17/2011 5:27 PM (GMT -6)   
Hi My 20 year old was just diagnosed with Lupus 7/15/11, we are not sure if it was dorment or it was induced by epilepsy meds (Lamictal) She was diagnose with Epilepsy in Dec 2011. Im a bit devestated since my daughter only has one kidney and the implcations of a desease that can attack her organs just takes my breath away.

Actually the Dr who ordered her blood work has not been around for 3 weeks since the blood work was ordered and done. We have had to talk another dr into getting her results and letting us know, so we still have not had a formal consult. We have been at the mercy of the internet! She cant take steroids to treat lupus, I dont know what we can do.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 7/17/2011 5:35 PM (GMT -6)   
Newbie to Lupus, too. Since Feburary I've been in constant pain so much I'm getting used to it. I've never smoked, drank, or walked on the "wild" side of life. I tried to take care of myself as best as I could.
I used to be a couchtater by choice because I loved TV. Now because I wear out so quickly I'm tired of being a couchtater.
I used to be able to get up and go without worrying about the sun. Now I have to remember my sunscreen, hat, and cover up.
I used to be able to go on enless errands that would take all day. Now I have to see if I've got enough energy to do what I need to do.

Veteran Member

Date Joined Jun 2008
Total Posts : 1470
   Posted 7/18/2011 6:48 AM (GMT -6)   
Hey there! Welcome to HW! SO sorry to hear about your diagnosis. You will have a lot to learn about what your body needs and wants, and you will need to listen to it. If you need rest, don't push yourself...get the rest. Listening to your body can possibly help prevent you from feelign so horrible.

I was in the same boat with you on the medications. Before lupus, I never took anything. I wasnt even one to take cold medications or aspirin. But please listen to your doctors now. Medications have now saved my life. Most recently after a week stay in the hospital this past month. So please, research the meds they give you and know what to expect! They really do help!!
Lupus Moderater
Myfortic, Prednisone, carvedilol, Eliphos, furosemide, sodium bicarbonate, Celexa
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, July 23, 2018 1:15 AM (GMT -6)
There are a total of 2,984,480 posts in 327,252 threads.
View Active Threads

Who's Online
This forum has 162005 registered members. Please welcome our newest member, Anxious me.
280 Guest(s), 5 Registered Member(s) are currently online.  Details
mhgdfsf, xaxa1517, Girlie, insomniaaa, Tall Allen