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Second opinion?

Jan 14, 2016 7:43 PM

Hey all, I've been away since before the new year but am glad to be back and catch up. During my break I did finally see a Dr for chronic widespread pain (although it is pretty low grade compared to many of you on here) and fatigue. It was also my first Dr apt in over 2 years. The Dr did blood work and it all came out perfectly. The Dr told me I fall perfectly into the dx of fibro and chronic fatigue. She didnt seem very willing to give me much else after that though. Just to try gluten and dairy free diet and a f/u in 3 months. I just feel like one blood test isn't enough to hand someone that type of dx without any other testing. What was your guys experience with being diagnosed and how extensive was the testing to rule out everything else? Any input is appreciated!

Jan 14, 2016 7:53 PM

Welcome back Haileyann. I started having fibro symptoms in 2007, but my PCP wouldn't give me the official dx until 2012. There are certain criteria for fibro, and the doctor has to have seen you multiple times with consistent symptoms, and trigger points for over 3-6 months (I think that's right). What type doc is this? They may not be very familiar with fibro. If it were me, I'd get a second opinion. A fibro label can be a catch all and docs still looking. Even though I kept complaining something else was wrong, it took until last year to find out I have Sjogrens & hypothyroidism, both which are autoimmune (AI) also, and share many common symptoms with each other, fibro, and many other AI diseases. Follow your guy instinct. πŸ˜·πŸ™πŸŒΌπŸ’•

Jan 15, 2016 3:30 AM

How many vials of blood did they take? Do you remember?

Jan 15, 2016 9:39 AM

You certainly should see other drs. I would suggest a rheumatologist. I also saw a neurologist. As FlappyLady said, not all drs are up on their Fibro information. For example, false positive blood work. Your bloodwork might show your thyroid as being normal but we all know that most of us fibroites have low thyroid. Again as FlappyLady described most of us have all the same 'extra' diagnosis in addition to Fibro. Most of us have a autoimmune disorder for some reason.
Fibromyalgia is still a misunderstood diagnosis and medical research lacks the funds needed to truly gain more knowledge about it. πŸ˜–
Good luck & God bless all.

Jan 15, 2016 10:15 AM

The links said they didn't exist guys. But I've read a lot about fibro and chronic fatigue (I brought my Dr a checklist for both) and she looked them over and just basically agreed with the lists. They took 3 or 4 vials of blood and I was negative for inflammation and ra factor also. I'm pretty much just caught between the fact I can say yes to most of the fibro symptoms but haven't had very much other testing. Will definitely follow up with another Dr though and I'll keep you guys updated. Thanks for the advice all. Best wishes for low pain days everybody!

Jan 15, 2016 10:56 AM

Good luck Haileyann. I hope that putting together a good team of doctors and have them all communicating, you will get the answers you need. Don't get frustrated though because sometimes it takes years to get definitive diagnosis. I was just diagnosed this year with the MTHFR gene mutation which prevents you from absorbing certain vitamins and now, I'm waiting to be tested for Sjogrens. It's all a process and not normally a good one but once you have the answers you need, you can put your life in order and get to living your life instead of wondering. Sending gentle {{Hugs}} and prayers that today is a better day day for you. πŸ’•πŸ™πŸ»πŸŒ»

Jan 15, 2016 8:36 PM

AlwayZ, you, me, & ferretbandit have the MTHFR gene defect.

Jan 15, 2016 11:10 PM

When I was tested to rule everything out to diagnose fibro, it seems like they took 9 vials of blood. It was the max they take at one time. I still have only managed to get one doctor to definitely diagnose fibro. He was a rheumatologist. That was in 2008. I had been trying to get a diagnosis since my back surgery in 2004. My doctors seem to have just given up on me.

Jan 16, 2016 9:31 PM

I hate it when docs do that. Have you thought of getting a new doc sapphire?

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