I have fibromyalgia.
Crowd: "Hi GrumpyCat!"
GrumpyCat: "I have been accepting my diagnosis for 14 days"
Crowd: “Way to go!”, “One day at a time, you know.”, etc.
That’s how I feel about this thing. I have been refusing the diagnosis for almost a year, not because I am crazy or a glutton for pain; I did not want it. Not the being sick part, that doesn’t bother me at all. I have a chronic autoimmune disease…I am good at being sick. I didn’t want the title, “FIBROMYALGIA”. It was a dirty word.
How about some background before everyone starts thinking I’m a little off my rocker: I was a nurse in the ER for years. I have seen patients with chronic pain, and patients with “chronic pain” (the quotes are air quotes. Try to imagine me using them:-D). Many, if not all of the “chronic pain” patients I met in the ER complaining of the worst pain in their lives had “fibromyalgia” (air quotes again). The fact was; however, that most of these people simply wanted drugs. They wanted an injection or infusion of Dilaudid, Benadryl, and Phenergen, and they wanted a prescription of 30 Percocet to go. Many of these people were those that we would see weekly or monthly, and always for the same thing. In the ER, “fibromyalgia” was a made up disease and an excuse to get a fix; not even the docs believed that it was a real thing. It was a junk diagnosis used for one of two purposes: 1) A patient had such vague, and unexplainable symptoms, that some doctor slapped them with a fibromyalgia diagnosis or 2) Because there are no tests, exams, or diagnostics that can be run to positively determine fibromyalgia (or, even better, prove that it isn’t present), people with opiate addictions adopted the diagnosis for themselves. So, I left the ER with a very skeptical view of fibromyalgia. Thankfully, I was exposed to other patient populations in my next job working with patients who had a lot of chronic pain. Most of it was Ortho related, or related to degenerative arthritis, but many of these folks had developed secondary fibromyalgia. I learned what it was, how to treat it, and, most importantly, that it IS a real thing.
Back to my fibro story. In May of 2012, I was diagnosed with psoriatic arthritis (PsA) and I was in full flare mode. It was pretty awful. I had to switch from Humira, which I had been taking for psoriasis §, to Remicade. It took almost 6 months for my PsA symptoms to subside, but it still had awful pain. It was deep in my legs, an ache that I couldn’t shake no matter what I took. I went back and forth with the doctor, and finally she said that she thought I had fibromyalgia. I fired her and went to another rheumatologist. Same song and dance here, until he, too, suggested that I had fibromyalgia. I fired him. Now, I drive an hour to see my rheumatologist. I have been with him for a little over a year now. He had mentioned fibromyalgia to me a few times. We had talked about it. He actually took the time to hear about my fears associated with the diagnosis, and even convinced me to try Cymbalta and when that didn’t work, he got me to try Savella. That didn’t work either. I was convinced that it was related to PsA and might be bone marrow edema, but I couldn’t get my rheum to send me for an MRI to check. He wanted me to try Lyrica, but I was done playing with medications.
The pain I have been dealing with has been incredible. My pain meds don’t work for it. I have managed to survive the last year or so, but the last two months have been horrid. I was in with my favorite PA at the GP’s office. I am lucky enough that my GP with manage my pain and I don’t have to go to a clinic. Anyway, I had been having a particularly bad few days, and I asked him about Lyrica. He told me that he was happy to prescribe it to me. We talked about it a little, and I ended up leaving the office with the prescription in hand. I filled it a week later, then let it sit. I wanted to try it on a Friday evening. That way if I had side effects, I could deal with them without worrying about work too. I managed to put off starting for another 2 weeks, because I am me, and I think I was still in denial. Then, I had the night from hell. I kept waking from pain, I couldn’t sleep, and my legs hurt so badly. Finally, around 5am, I was able to do my morning pain meds. Usually, after an hour, I feel better, but this time I had no such luck. I tossed and ached for another hour. I felt so desperate. Then, I reached for the Lyrica bottle and took my first dose at seven in the morning on a Wednesday. The pain actually eased within the first hour and I was able to sleep for another hour or so. I made it though my work day too. The pain started to creep back in the early evening and I took the second dose. Thankfully, I got the same result. Now, almost two weeks later, I feel like a different person; I feel like myself. It’s been two years, and that woman staring back at me in try mirror now is a stranger, but I really like her! This week, I walked twice and went to the gym today. I survived the entire water aerobics class!
My feelings about having this have changed immensely since I started treatment, and it actually started working. If I have to have fibromyalgia to feel well, then so be it. I haven’t felt so well in years.
Sorry for the novel. I can’t ever seem to write anything that is short. 
