Emily Ullrich's Story

What were the steps leading up to your diagnosis?

I was reading incessantly, trying to figure out what was wrong with me. When I found a scholarly medical journal about fibromyalgia, I was astonished — 100 pages in, I had EVERY symptom in the book! Literally.

I thought maybe I was being biased, so I decided to scroll through to a random page, and if I had the symptom on that page, then I'd believe it. I ended up on a page about Morton’s toe, which a pedicurist had told me earlier that week that I had. I couldn't believe it.

When I arrived at my doctor's office with a stack of fibro books, he rolled his eyes at me and told me that he "didn't believe in fibromyalgia." I later saw in his notes that he had written, "She's obsessed with thinking she has fibromyalgia." After that I went to a neurologist, who told me after five minutes of talking that I was a "textbook case."

I still struggle to be taken seriously, and even the doctors who do take me seriously believe that ONLY Cymbalta and Lyrica (neither of which worked for me) are treatments. Also, when I try to discuss the science of fibro with doctors, they frequently dismiss me, and I've been told at least a hundred times that it's all in my head.

Another awful and demeaning comment I've heard over and over from doctors in reference to fibromyalgia, as well as interstitial cystitis, endometriosis, and Sphincter of Oddi dysfunction (all of which I have), is that I have "too many 'garbage pail diagnoses.'"

What lifestyle changes have you needed to make?

I have to ensure that I get adequate sleep on a quality mattress. I have created a “fibro nest," where I have a comfortable blanket, my TV, computer, heating pad, essential oils, and TENS machine. This is my place of solace, where all of my tools are handy for distraction and self-soothing. I also take numerous medications, try to eat well (no processed foods, preferably organic, non-GMO, and try to limit my sugar intake!). I also try to swim and do yoga when I'm feeling well enough.

Who has been there for you? How?

My mother and my husband have been great, picking up the slack on the things I can no longer do and providing me emotional support. I've also become active in trying to raise awareness and advocate for pain patients, and have become a part of a number of organizations that provide me with peer support and information, including becoming a delegate to the Power of Pain Foundation.

What accomplishment are you proud of?

I am proudest of my most recent published article, on Pain News Network. It has gotten over 2.5 thousand "shares" on Facebook alone. Some days, I'm proudest that I've been able to shower, do my hair and makeup, and still be capable of leaving the house with a smile on my face!

What's your advice to someone else living with Fibromyalgia?

Listen to your body. If it's telling you to rest, rest! Realize that you can still have a happy, fulfilling life. Just accept that the way you get to your accomplishments, and the goals themselves will change. And that's okay.

Is there anything else we should know?

I am an outspoken advocate for pain care rights and social equality and empowerment of the chronically ill. I am a former college professor, and even founded my own non-profit organization in 2010.