Newly diagnosed with fibro and very confused

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Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 7/13/2017 5:01 PM (GMT -6)   
Hope everyone is feeling well. I just got diagnosed this afternoon with fibro. This is my second rheumatologist and I have been struggling for over 3 years. My first rheumatologist says I have an inflammatory disease but wasn't able to diagnose it yet. I had a positive Ana blood work but all others are negative. I do respond well to prednisone. All though I am happy to have a name for my illness I am still perplexed. Could I have an ai issue along with fibro? Also, the rheumatologist said they don't treat fibro. Who does? I really feel lost. Thanks in advance.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted 7/13/2017 10:05 PM (GMT -6)   
Sorry you have a new diagnosis! It does seems they've told you some contradictory things, it's no wonder you feel lost!

1) You have an inflammatory disease. (Ok, could be Lupus, but Fibro is not considered inflammatory.)
2) You respond well to prednisone. (Ok, that means it's inflammatory, could be Lupus, but Fibro doesn't generally respond to prednisone.)

So are they giving up on diagnosing an auto-immune (inflammatory) disease?? Do you have other symptoms of the 11 diagnostic symptoms for lupus? Just saying "fibro" and showing you the door?

Now I'm not expert on Fibro, but I thought it was treated by a rheumy. Maybe it's just your particular rheumy who doesn't treat it? Did you ask them who would treat it? Also, HW has a fibro forum, you might ask questions over there.

Sorry, I seem to have more questions than answers.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

BreRosie
Regular Member


Date Joined Jun 2016
Total Posts : 57
   Posted 7/14/2017 7:38 AM (GMT -6)   
Lisabeans, I think you might need to find yet another new rhuemy. Mine says that I have fibro as well as lupus and he treats both. ... I'm sorry that you having such a tough time getting a good dr.

Diamond20_UK
Regular Member


Date Joined Jul 2011
Total Posts : 60
   Posted Yesterday 6:02 PM (GMT -6)   
Hi Lisa,

You may have been diagnosed with fibro but it sounds like there's a possibility of Lupus as you can have both and that's so annoying more or less being fobbed off, it does my head in.

You need a specialist who will run extensive tests, i was'nt diagnosed with lupus till 2008 by a good dermo who did 9 bloods and found lupus and sjogrens, then saw a rheumo who did a further 12 and was then told i was actually born with it.

These are the answers you need..it's like you've been given 50/50 to guess mad

Terry
Diagnosed with MCTD (Mixed connective tissue disease)

Lupus SLE/SCLE/Secondary Sjogren’s syndrome/Raynaud's phenomenon/Scleroderma
Antiphospholipid Syndrome/Peripheral neuropathy/Muscle Atrophy/COPD/Hypothyroidism
Chronic IBS/Epilepsy/Osteoarthritis (Bipolar-Manic depression-OCD)

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7720
   Posted Today 9:01 PM (GMT -6)   
Diamond,

Do you have Lupus? Please introduce yourself!

Thanks
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Lisabeans
Regular Member


Date Joined Jun 2015
Total Posts : 144
   Posted 7/20/2017 8:50 AM (GMT -6)   
Thanks Diamond. This rheumotologist is making me get blood work. They are checking sedimentation rate, CRP, Comprehensive metabolic panel, vitamin d. She marked all labs with fibro as primary and positive ana as secondary.
Lisa
Ulcerative Colitis (remission)
GERD Reflux taking Zantac
Recently low positive ana. Taking Leflunomide (arava).
Also taking Amitriptyline to prevent migraines.
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