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Posted 10/21/2014 4:10 PM (GMT 0)
So, I went to the rheumy yesterday and she feels very strongly that I have fibro, as a secondary sickness.

I'm concerned because I think I'm showing signs of lupus and that's pretty serious. I believe if the urine analysis comes back with same result as last time it's a definite yes. That means I'm really sick.

I'm not sure how to feel about that. I'm so used to thinking, "if I just get enough rest everything will be better." This is just different. I don't want to tell my family either. They're already really worried about me.

This is just really strange because nothing serious has ever happened to me. The closest thing was a phantom blood clot that only one doctor could see. This is all really weird.
Posted 10/21/2014 4:24 PM (GMT 0)
I know it must be scary for you at this time. There are many people here on the forum that have both. I am not one of them, but I do know there are meds and treatments that keep the symptoms down. I would tell your family so they can suppport you. Maybe you can understand it more before you explain it to them. I think if you hold back telling it will lay heavy on your heart and cause more stress.

At least your getting some answers why your feeling the way you do. This can be a good thing because you can learn new ways into treating both auto immune problems. Getting started on the right meds and treatment will make a difference. Did your Dr. say how they are gong to treat your lupus?

Don't forget there is a lupus forum here. I am sure you can learn lots there.

Just remember we are here for you. Your never alone in this!

Post Edited (ak angel) : 10/21/2014 10:28:01 AM (GMT-6)

Posted 10/21/2014 5:21 PM (GMT 0)
Well at least you will know what you are dealing with, so you can be treated and move forward...its fine to wait til its an absolute diagnosis, but then you need to share esp with family..

Either disease is hard to cope with, together i am sure harder..i am not that familiar with lupus. But have had the fibro since i was little.
My family certainly did not understand my disease very well..so i had too...
Posted 10/21/2014 5:48 PM (GMT 0)
I checked out the lupus forum, it's not very active and most of my active symptoms seem to be from fibro, thank God.

If it does turn out to be lupus it will be caught really early, and thus far all my organs are functioning well and healthy.

I just started plaquenil, so we'll see how that goes.

Is it strange to be a little excited? I've been silently having fun and getting a little stressed out trying to figure out what's going on with me.
Posted 10/21/2014 5:58 PM (GMT 0)
I agree the lupus forum is not very active but I'm there at least 3 times a day. Some of us just don't feel like posting often like it is here. If you ask questions you'll get an answer before days end.

It's a challenge having both but my fibro and RA are more active than my lupus.
The plaquenil will take up to six months to fully kick in.
Posted 10/21/2014 8:03 PM (GMT 0)
this can be a frightening time but realize that if you do have lupus, it has been caught early and can be treated to keep it under control. Joy has been handling both lupus and fibro with RA thrown in.

I have so many problems I can't list them all but I still am having a good life and so will you! You will be better once you know what you are dealing with and make a plan of attack. We are here for you, too. We are a very active forum!

Sherrine
Posted 10/22/2014 2:43 AM (GMT 0)
The Lupus forum kinda' sneaks up on you -- it doesn't look active but it really is! Like a poster above says, post something there and you'll get answers shortly.

Unfortunately, a lot of our long-time members are either lots better and not posting much, or very very sick and not posting much!

I've got Lupus, Sjogren's and Fibro -- don't post over here as Lupus is my biggest issue.

Plaquenil is the first line of defense against Lupus - it helps slow disease progression. Next is generally a NSAID or a steroid if your blood work shows a lot of inflammation. Then there are a handful of other meds that can be used if things get more troublesome.

Best wishes.
Posted 10/28/2014 3:20 AM (GMT 0)
The test came back clean this time. I find that interesting since I was feeling worse than the last time. But my ANA went up a step.

It really needed to sink in that I need to take my health more seriously than I used to. I used to just shrug my shoulders if I messed up and then continue to not care, but now I really have to. It's kinda nice, in a way, it's a push to put in that extra effort.
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