I'm scared this isn't fibromyalgia

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Debbie30252

New member
Joined
Feb 17, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
12/2019
Country
US
I was diagnosed with fibromyalgia in November 2019 by a neurologist who only conducted an MRI. I have been to an internal medicine and gastro doctor who tested ANA and smooth muscle antibodies. The first time ANA was negative the next it was positive. I decided to go to a rheumatologist because I want to rule everything out. I'm currently waiting on my test results. He seems to think its autoimmune hepatitis, lupus, or mixed connective tissue disease. The reason is because of high liver enzymes. I've dealt with that a while. I'm not obese and when I'm eating well my enzymes are normal. At this point I really want this to be fibromyalgia. Anyone else been through this? The waiting is the worst part. Thinking I might have a disease that might take me from my three small children makes me very sad. Of course the rational thought is that I'm not got going to worry about it until I have results but it's not easy for me.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
442
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Yeah, first I wanted it to be fibro and was scared when it wasn't, esp. cos the tests for ankylosis spondylitis showed a tumour in my spinal canal (which isn't growing, it's turned out, and is probably harmless, so I'm leaving it in until that changes). But then I thought certain symptoms like a feeling of feverishness or my energy bursts seemed like autoimmune or an ATP / mitochondrial problem, so I was thinking it might be that. Now my centre for rare diseases thinks it might be Sjögren's (and a OK state of Hashimoto anyway), which I'm testing for, but says ATP will not help (research is not there yet anyway).
But in the long run, it all doesn't make any difference to me, because none of this diagnosis-stuff helps. Whether fibro or autoimmune or ATP, it's all too complicated and new for today's medicine at the moment, so all I can do and have been doing is try out every kind of treatment that seems helpful. For ATP, a functional doc here who claims he can heal fibromyalgia (and much more) suggested a mineral & vitamin regime in one of his books, so I skeptically tried it for over 2 months: it didn't help in the least. There are also certain physiotherapists here, youtube-gurus, who claim they can heal fibromyalgia (and more). But they can't. They just do have good physiotherapy-videos which help get rid of some of the single pains, but not all and not the Big Ache or Exhaustion or Sleeplessness... So the main help of this diagnosis was to find all you guys... :cool:
 

Affinity

Distinguished member
Joined
Sep 9, 2020
Messages
168
Reason
DX FIBRO
Diagnosis
05/2014
Country
US
State
TX
I hope your diagnosis comes back as you hope!
 
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