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How were you diagnosed with Fibromyalgia?

Feb 25, 2016 2:57 AM

I've been experiencing pain for 6 years, but I never knew how to describe it until I recently read up on the symptoms of fibromyalgia. I looked into similar diseases and syndromes, but nothing else includes all of the symptoms I'm experiencing so I'm almost certain that fibro is the cause of my pain. Working as a graphic designer has become so hard with this debilitating pain. I've already scheduled a doctors appt for a week from now to begin to diagnose this pain. I've heard that it's very difficult to diagnose, although I've read up on the points of pain and it seems to be very similar to where my pain originates from. How were your experiences with getting diagnosed? I've been asking doctors about this pain for years and none ever had any helpful information or suggestions. I'm just very surprised. I would love to hear about your experiences..

Feb 25, 2016 4:11 AM

I went to my doctor in terrible pain and said there was something wrong I fear that I was dying from some disease I didn't know what and I was crying I was in so much pain this Dr. had the foresight to give me an exam and say I think you have fibromyalgia and that's where it began

Feb 25, 2016 9:19 AM

My obgyn actually told me back in 2007 or 2008. My response was no really figure out what is wrong with me. I was re diagnosed in 2014 by my primary care then a rhuemotolgist followed by 2 pain clinics. In 2015 by another rhuemotolgist. Then in 2015 they figured out the mess my spine is in. My personal opinion is fibromyalgia is a symptom of something else and I believe there is an autoimmune connection.

Feb 25, 2016 1:43 PM

My PCP started suspecting mine in 2007-2008. During 2009 my inflammation levels started climbing. In 2010 they removed a very large mass from my pelvis. In 2011 I had surgery to block off 11 varicose pelvic veins. During all this time my pain increased, and in 2012 I got the official dx of fibromyalgia. 🙂💕🙏🌼

Mar 06, 2016 6:58 PM

Thanks for the replies :) My appointment got cancelled and I had to make a new one for next week so I'm hoping all goes well and that I can get diagnosed during this appt, or at least closer to learning what I can do to help!

Mar 08, 2016 12:10 PM

I had to really hammer the point with my VA NP. Exhaustion, pain, more pain, confusion. I did my own research and suggested fibro. She jumped at that idea, but at the time she just didn't know where to send me, so it became a "handle it at home" thing.
With my hip, I also researched it at home because a couple symptoms were bothering me. Went to VA and got an xray. Confirmed possibility of my self diagnosis, so got mri and imaging. VA only wanted to manage pain, not cure the problem. Fortunately, Medicare doc has a great network. Surgery portion was way pricey, but it ended 20 years of pain and lameness.
Back had also been a problem on and off for 20 years. VA gave a good series of xrays, found that my L4-S1 were really bad. They sent me to pt again, and now that my hip is fixed I can actually do the exercises.
Medicare doc called for an mri after seeing the VA xray. He called me right after he saw the mri results and said he was submitting the refferal. So we'll see who I go to. Maybe if I see a Neuro that doc can help the fibro? I'd bet my Medicare doc would send me to a Rheum if I went to him about just the fibro, but it's just a small thing compared to my DDD and other stuff. (The Porter Ranch methane leak was less than 2 miles away and now I have some cardio problems.)
I can't remember exactly when the fibro pain started, there were hints of it in the 80's, which continued, but it wasn't until after I had pneumonia that it became horrendously bad. But I had to find out what it was myself. Doctors thought I was malingering because the problems were so vague, and now they blame all my other problems on the fibro! Arg!

Mar 08, 2016 12:17 PM

That sounds so frustrating. I can't believe how many doctors told me they had no suggestions or tests they could do for me when it all started. I think my pain really increased after I had a C-section. The connection does make sense to me. I'm sure any trauma to the body really worsens the problem. I've had many problems in the past that were never linked to fibro, but now seem to make sense. TMJ, Depression, Anxiety, gastrointestinal problems, foggy memory. It's all coming together. I'm going to a doctor that was specifically trained to treat fibromyalgia, so I'm hoping she knows what's up!

Mar 08, 2016 12:23 PM

I read somewhere that ragingly bad hangnails was also an indicator! It is a weird problrm, and mine do get really bad even though I take good care of my hands.
Many doctors still go for "pain in all 4 quadrants" or the trigger points, but every person is different.
It's like cancer. You don't diagnose every cancer the same, nor do you treat it the same, although they are all called cancer. My fibeo doesn't look like anyone else's, but it is still fibro! Now, to teach the doctors.

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