Saturday, February 11, 2012

The Dreaded Fibromyalgia Diagnosis

Last October, I finally had my long awaited appointment with the Rheumatologist.  I had waited months to get into this guy.  He came in, spent about 10-15 minutes with me, then asked me to meet him in his office.  When my husband and myself sat down with him, he said that he believed I had Fibromyalgia.  I didn't like hearing that.  After all, isn't that just a diagnosis that a doctor gives someone when they can't figure out what's wrong with them?  MY bloodwork revealed a weakly positive ANA, a high SED rate, a high CRP.  That wouldn't indicate just Fibromyalgia, would it?

On the drive home, I read through the pamphlet he'd given me on Fibro, from the National Arthritis Foundation.  Yeah, I screamed out in pain when he'd applied pressure to the tender points.  Yeah, I do have insomnia.  I do have that thing they call "fibro fog", and I'm stiff and sore when I wake up.  I have headaches almost daily, and symptoms of IBS....but I still wasn't comfortable with a diagnosis of Fibromyalgia.  More so then not being comfortable with the diagnosis, I wasn't comfortable with the doctor.  I felt that he rushed, he cut me off when I'd try to speak, and that he in general was just a complete pompous ass.  He made me feel stupid.

They'd given me another appointment to see him again the end of December.  Even though I didn't personally care for this doctor, I decided that maybe he just had been having a bad day the 1st time I'd seen him.  -Or maybe I was the one that had a bad day.  I kept my appointment, but again I was made to feel stupid and like I was wasting his valuable time at roughly $200 for a 10 minute visit.  I wasn't told anything new.  He didn't do anything new.  Yet I was instructed to come back again the end of February. 

An internet friend had been going through roughly the same thing I was, but she was being seen at the Cleveland Clinic Foundation in Cleveland, OH.  She raved about how highly she thought of the CC and the doctor who she see's.  I did some research and was very impressed.  I called to see if they'd take me for a 2nd opinion appointment.  They were happy to do so.  Although I wasn't seeing the same Rheumatologist that my friend goes to, the doctor I was to see was also highly trained with great credentials.  All of the Rheumatologists there are wonderful, experienced and knowledgable.

I went to my 2nd opinion appointment and can't say enough about how impressed I was.  I live roughly 2 hours from there, but Dr. Gota and the CC is well worth the drive.  I actually was at my appointment longer than it took me to drive there.  After roughly 4 hours there, 13 tubes of blood, x-rays, and u/s I walked out still having that dag gone diagnosis of Fibromyalgia...but with a clearer understanding of Fibro and that it really can hurt that bad and still be just fibro.  I also walked out with the additional diagnoses of AC Joint Arthritis in both shoulders, Osteo Arthritis in both knees, PCOS (which isn't even her speciality...it's a GYN issue, but she cared enough to do the tests), and IBS.  I had been diagnosed with the bone spurs on my hip from the 1st Rheumatologist and his x-ray, and the diagnoses of spine bone spurs and Tarlov cysts from an MRI that a pain management doctor had ordered about a year ago.  That same MRI had also revealed arthritis in my neck and spine too, but neither of the Rheumatologists have mentioned that to me so I don't know exactly where that stands LOL. 

Some days I can barely move, from the pain I have.  I will never again underestimate the pain that Fibromyalgia can cause.  I will never again say just Fibromyalgia.  I will never again think that this syndrome is just something made up.  Unfortunately, I now know how evil Fibro can be. 

I named this blog The Fibro Frog for 2 reasons...one was a play on words for the horrible Fibro Fog I suffer from almost daily.  The second reason is because I've always loved the acronym frog...fully rely on God.  I've been doing a lot of that lately.  Daily, as a matter of fact.  I've also decided to stay on with Dr. Gota at the Cleveland Clinic.  I mean, the CC is rated as the 4th best hospital in the U.S. so if I'm within a 2hr drive of there, I'm treated like a human being there, my pain and symptoms are real to them, why in the world should I drive 45 minutes to a guy I can't stand?

I hope I get a lot of followers on this blog that will comment and contribute.  Maybe we can build a network of support for each other, and share secrets of what works for us.  Granted, no two people with fibro or even arthritis will suffer the same symptoms all the time.  Not everything that works for one person will necessarily work for another, but maybe (hopefully) we can all work together to help one another.  At the very least, we can spread the word about how real Fibromyalgia is, and bring awareness to this evil thing.


  1. That is funny that you say "isn't that just a diagnosis that a doctor gives someone when they can't figure out what's wrong with them?" Because that is exactly what I asked my Doctor when she told me that she believed that I had Fibromyalgia and was referring me to a Rheumatologist. Of course she kind of giggled and said "No, it is a true disease and I really do believe that you have it."

    I only went the the Rheumatologist twice and then we lost our health insurance but he prescribed me a muscle relaxer and he raised the milligrams on my Cymbalta to the highest dose. I was also taking meloxicam from my regular Doctor but I am not too keen on my Rheumatologist because he got a little upset with me because I told him that I can't take the muscle relaxers around the clock because it makes me too tired and with doing daycare I just want to sit down and go to sleep. He got a little huffy and told me that I at least need to take one at night to give my muscles time to have a break.

    I do need to go back now that I have health insurance again and start over with all the xrays and blood work to see where I am because that was 3 years ago. I know that I have days where I just want to stay in bed because it just feels so much better.

    I feel your pain! I will be sharing this blog on my blog and get the word out for ya!!

  2. Aww thank you so much for sharing and helping me to get the word out. Awarness that this IS a real illness, and plays hell with a person's body, is key. Many, many people think like you and I did. I was only prescribed to take zanaflex (muscle relaxer) at bedtime. The new rheumy told me to dc that at bedtime and switched me to amitriptylene instead. I also take Ultram as needed for pain. I really hope that you do make time to go in again and have everything checked out again. Fibro can run with so many other auto-immune diseases that can take years to finally show up in lab tests. Take care and hope to see you around here often! =)

  3. I'm so glad I found your blog. I too suffer from Fibro among many other things and have since I was a child. All the symptoms were there but the doctors didn't know much to give me any kind of diagnosis. I was told a lot "It's in your head", I was "Going through growing pains" (which was my fav. (due to the irony) to hear considering I have been just over 5' since I was 12, along with other diagnosis that just brushed the issue off as if it were nothing. By the time I got to the Nurse Practitioner that finally recognized my symptoms it felt like I'd tried everything under the "medical sun" just to deal with the pain, PT, medications, even therapy but nothing helped. Three years ago the pain got so intense that my N.P. put it all together and diagnosed me. I spoke with the Dr. she works with about it as well and the best description he could give was I would "feel things more intensely", he gave me some meds that again did nothing for me and we all left it at that. Now that my other health issues have been getting more intense my heath-care prof. are being more proactive about it and I finally got an appt. with a Rhumatologist who confirmed the diagnosis and things are moving along.
    This whole Fibro roller-coaster can feel so isolating. I love finding things like your blog and groups on FB. It's good to know that we're not alone in all of this & there really are people who truly understand.
    Thanks for being brave enough to have this blog and give the encouragement to so many others.