"I believe what you have is something called Fibromyalsia." These are the words that were spoken to me last October by my primary care doctor. After more than a year of not being well, without obvious reason, this is what he came up with. I was pissed.
Although I understood that, of all the other illnesses they were looking at (RA, Lupus, & MS), Fibromyalsia would be the best of all the circumstances. It has no long-term damaging effects along with no impact on lifespan. We'll talk later about the impact fibromyalsia undeniably has on day-to-day life. So this diagnosis was good, right? Wrong. Like I said, I was pissed. I thought that this diagnosis was thrown at me because the doctors were at a loss and had no other answers(which was partly true). I didn't believe this was a real condition. I thought it was condition that better served the drug companies than anyone else since there were not any concrete tests that could prove it really existed. I refused taking medication for it.
Fast forward a couple more months. I had been put on steroids a while back. The idea was that if after taking them, I found great relief, red flags would go up. Red flags sailed high and nearly blew of the flippin' poles. The response/relief was immediate. The problem was, getting me off them. Now we were trying a very slow wean, one that would take 3 months. My final dose came just before Thanksgiving. My body was crashing. Hard. I couldn't move. I had bilateral joint pain, all over. Moving was so painful, I just laid there wondering what in the hell was happening to me. Since I responded so well to the steroids initially, I was referred to a rhuematologist. I made a call to him and he said, "this is rheumatoid arthritis. We are going to have to get you on something else." I had been taking the introductory dose of methotrexate. When I came down off the steroids, it was clear that the introductory dose was not enough. He would increase that, place me back on the steroids and come January, I would start bi-weekly injections. It is August and I have yet to be off the steroids.
"I have RA." I would reluctantly tell nurses and docs when they would ask about the several meds I have been on. Never really would mention the fibromyalsia. I even asked my primary if we were dropping this. He said no. My rheumatologist agreed. It stays. I still didn't believe. And then, one day at my ob/gyn visit, I asked her, "do you believe in fibromyalsia?" She looked at me and answered very honestly, "At first, everyone I encountered who had fibromyalsia always seemed to be these depressed, woe is me types. There just wasn't enough information out there. (She then went on to compare it to disorder that was highly publicised and seemingly over diagnosed). Now, we have more information and yes, I do believe it is a true condition." She gave me a lot to think about, but I still wasn't convinced. And then...
Here you go, Jill. I met an old school friend out one night while she was in town. And while, for the most part, I would prefer not to talk about all my ailments, Jill genuinely asked (I am not surprised, she has been so supportive) and wasn't satisfied with my standard answer. She asked if I had ever been tested for fibromyalsia. When I told her I have and do have it she told me of a friend of hers who also has fibromyalsia and didn't talk about it either. She encouraged me to reach out this person for support. In that moment, I had no interest but was touched by Jill's interest and genuine concern. For some days after, I kept replaying her words about not wanting to talk about it and understood that she was right. I didn't want to talk about it. I didn't want to give it life. Because I still didn't believe it was real.
I gave into the new drug. The one that would serve as a nerve blocker and address the fibromyalsia. The disease I didn't have. The disease I didn't want to believe or admit I had. Because there seems to be such a stigma attached to it. I felt it was a disease for the weak, mentally and emotionally unstable. I thought that my doctors believed all this to be true of me. I saw the adds. Some of them are anti-depressants(not the one I am on). I am not depressed. I hurt all over and am exhausted, but damn it! I am NOT depressed. Pissed! Are there any anti-pissed drugs out there that claim to ease the symptoms of not being heard, understood or truly listened too? Yeah. I thought so. The few times I would admit that I had "it" I could feel my jaw tighten and my fingers curl to a a pathetic fist. I hated saying it.
I have Fibromyalsia. I also have Rheumatoid Arthritis. Both are invisible illnesses, for the most part. Did you read that? I have Fibromyalsia. Fibromyalsia is cringing when someone hugs you or when your children want to crawl up on your lap and every muscle in your body tightens in the painful anticipation. I take it anyway. I can see them being more careful, despite my best efforts, it must be written all over my face. It is the lingering pain, for minutes after, when someone pokes you to get your attention. It is the overwhelming exhaustion (also a complication of RA) that hits you at several points in the day, sometimes all day or even, for days at a time.Fibromyalsia is the pain in my neck shoulders and several other muscles for no good reason at all. Fibromyalsia is nerves that are constantly misfiring. Fibromyalsia is pain. Real, I believe in it, how am I ever going to get out of this bed and make it through the day, pain.
It took a conversation with two friends, one a pharmacist, to make me reconsider past conversations and solutions with my doctors. It also took a good look at what was really happening. As I sat there in disbelief that I had to now rely on two pill boxes, I took a look at all the prescription bottles sprawled out before me. I heard my best friends voice, "If they [the doctors] didn't think you were sick, you wouldn't be on this..." Three times I went to pick up the phone to let my rheumatologist know I was ready to give in and accept the medication. He assured me at my most recent visit that it was important acknowledge both diseases for effective treatment. I want the best treatment I can get for the RA. Even if it means admitting having something I haven't always respected or understood.
My name is Rachel and I have Fibromyalsia. Believe it~or not!