Good day everyone,
Reading some posts I often see reference to diagnosis.
(I don’t often reply as I am all new to this, but know I thank you all and wish you the best)
I have a rheumy, she’s great, since 2006 with my official diagnosis
of SLE, Lupus. I have allot more going on too.
I have been told connective tissue disease (not even sure what that is!)
I have sjogrens’s syndrome.
Idiopathic Thrombocytopenia Pupera, ITP low blood
I was also told in the mix in a round about way I have fibromyalgia.
Hmmmmm....you know honestly sometimes I just don’t even listen anymore....it would just be too much.
So I just say “just another name for my collection..”
I suppose it matters to my specialists but for me....
I just think I am a walking miracle!
But back to my question, I have never had a proper diagnosis of fibro.
In fact before now all I thought fibro was was pressure points that got sore sometimes especially my neck and shoulders.
But this attack that started after I moved the end of August with a bad bout of inflammation from the lupus, after sometime and much pain and determination I was put on Meloxicam which fixed the inflammation, but then this new horror story started. That’s when my rheumy said this is not Lupus this is fibromyalgia with CNS involvement.
But still there were no tests or anything.
So maybe if there had been a proper diagnosis from the get go I would have been more aware and things wouldn’t have gotten so out of control.
Still, I had to move, nobody wanted to do that for me. Sometimes you just have to do more than you know you should.
Do you think a proper diagnosis for fibro is necessary?
Does it help a doctor follow the disease and therefore treat it better?
I know I sure don’t ever want to go through this again.
One other thing, last year was a very bad year the lupus attacked my blood and my platelets dropped to nil. I was put on 90mg of pred for about 8 months with pretty deep and fast tapers on and off to see if the pred fixed the low platelets.
It was just indescribable. My body was so swollen it hurt to move, and my hair fell out in hands full.
Then because of the Addison’s my electrolytes were so messed up.
The high dose pred made it so I could not stop peeing. I was so dehydrated. There was one time when the doctor mentioned low magnesium.
Finally after three rounds the platelets kept dropping, then I had to do chemo. Guess what it worked! Not fun but it worked.
My platelets are still up nice and high hopefully never to fall again.
But do you think that this is what caused the fibro to get so bad?
I never really felt perfectly well again after everything last year,
then the move, and then this horrible fibro flare.