Countdown to "D" Day

I suppose it might be a good idea to give some background on how I came to be diagnosed. A few years ago, we started having a little trouble with our doctor's office. The doctor was (and still is) great, but her staff was a bit, well, clueless. I deal with doctor's offices on a daily basis, so I know a bit about which ones have their act together on different things. Hers didn't, and with every staff change, seemed to get worse. Roughly one year later, she became less and less available, and the corporation that ran the doctor's office brought in a guy who looked like he came out of retirement to rejoin the medical field, to help out. Believe me when I tell you, he wasn't much help.

About this time, my husband ended up in the hospital and another doctor checked up on him while we were there. Our frustrations with our doctor's unavailability and her staff's apparent lack of competence were already causing us to consider finding a new doctor, but we hadn't actually decided to do so. Jim decided to approach this doctor about the possibility of taking us on as patients, and his reply was twofold: First, he normally handles geriatric patients and patients with serious, chronic medical conditions (like Jim's); and second, when he found out who our current doctor was, he was reluctant to agree because the other doctor is a good friend of his, and taking us on when we were her established patients created a moral dilemma for him that he did not want to deal with.

Before making the final decision to definitely look for a new doctor, we took the opportunity of speaking with the doctor we had had since moving to this city (up to that point, we had lived here 8 years). When we mentioned our concerns, she admitted that she had been frustrated about her staff situation as well, but she tried to avoid the question about her availability until we pressed her, and she finally admitted that she was leaving this practice to open her own in another city, a bit too far away from us for us to remain her patients. It was then that we felt free to find a new doctor.

Unfortunately for me, this would be easier said than done. Jim went straight to our old doctor's friend and colleague, while I began to search for a doctor who would be comfortable treating me, since I was neither geriatric nor did I have, to my knowledge, any serious conditions. I checked out a doctor who sounded perfect, and happened to be within walking distance of our home, only to discover that he also runs the local urgent care out of his office. Making an appointment with him would not guarantee I would be seen as scheduled, because he would have to take urgent cases above scheduled appointments. I found that there were problems at almost every office I looked into, that would not allow me to make any of them my location of choice for primary care. Because of this, I reluctantly called my husband's new doctor for an appointment.

While waiting in the office for my first appointment eight months ago, I was required to complete an intake form that asked a LOT of detailed questions about my health, so I listed all the aches, pains and symptoms I had had for some time, but hadn't really detailed to my prior doctor. I noted family history and personal history, and the new doctor reviewed each of these and discussed all the nuances of each complaint along with a bit of in-depth on the history, before beginning his medical examination. He also asked about sleeping habits (hours per night), then started checking several points on my body for my response to normal pressure applied at those points, as I discussed in my first blog. These points are known as "trigger points."

This is when the doctor made his initial, tentative diagnosis, explaining that bloodwork would have to be done to rule out other conditions, and explaining why he was looking in this direction: My sleep habits were poor (they still are, but not as bad, and not for lack of trying to improve things), and I have a history of physical trauma to the body (actually more than one for me, over the course of my lifetime). I also have symptoms of atypical depression, which is apparently another indicator, when evidenced in conjunction with the other factors he was finding in me. While these are not the only factors to look at in diagnosing fibromyalgia, They are, apparently, a few of the biggies.

After all the tests are done, everything else it could be has been ruled out. The doctor is encouraging, saying it is actually good news because this is a condition that should not prevent me from doing most things, although I may have to make a few minor adjustments in my life to avoid flareups. I have to admit, even though the doctor is speaking positively about this, I almost feel like I've been sucker-punched, considering what I knew about it before, plus what I've been learning lately. Having done some research while waiting for the tests to be completed, I am surprised to find that there are many things about me that pointed to this before now. I'll talk about them a bit another time.

Just A Little Out of Sorts

So I'm at the doctor's office in October 2009, seeing my new doctor for the first time, and going over my medical history. I describe how I have noticed that lately I have been getting depressed about little things that didn't used to bother me. I also describe to him my general fatigue and how I can occasionally feel disinterested in things. I add descriptions of my different little aches and pains (migraines, chronic neck problems, chronic back pains), so he begins a physical exam that includes pressing on different joints. He asks if it hurts, and at first I say "no," because to say that slight twinge of pain 'hurts' feels like it would be lying. Then he touches my left knee. "OW." He looks at me again with concern, then starts the pressing over again; "does this hurt, even just a little bit?" This time I am more honest with him and myself; yes, it hurts. But hardly at all, except for that knee.

At this point, the doctor tells me his initial diagnosis, which quite literally took my breath away: Fibromyalgia. He ordered several blood tests because, as he put it, this is a diagnosis of exclusion, meaning he would have to rule pretty much everything else out in order to say for certain whether this was or wasn't what I have. Everything else came up negative, so there is no longer any doubt.

Allow me to give you a bit of my background: I am a female, in my late forties, and I work in a government office that pays insurance benefits to folks who are disabled, usually for only a short period of time. I have been doing this particular job for about 21 years, but I started working for the government 31 years ago. For the first six years of my son's life, I was a single mother, but for nearly twenty years I have been happily married to the man my son now calls "Pop" and "Dad."

I have been noticing for the past few years how it has become increasingly difficult to do many things I enjoy, along with doing things that really need to get done around the house. Originally, I didn't think anything of it, because I presumed it was just part of the aging process. Then I started realizing that many women who were older than me, were running circles around me in these areas, including my own mother, who is currently in her eighties. When she visited from out of state, I thought the reason I was getting so worn out was because I was exhausted from trying to get everything 'just right' before she arrived, and that I hadn't given myself an opportunity to relax. I remember wondering how she does it, the day she dragged me out to my yard to help me clean it up (on her vacation), and when we ran out of daylight, she insisted on baking cookies for my husband and my son, involving me in the process. She could have gone on all night, but before the first batch went into the oven, I was ready to fall into bed and rest my tired body. The next day, I took a handful of ibuprofen and steeled myself for all that I knew she would want to do. I was more tired when she left, than when she first got here.

When the doctor first uttered that 'F' word, I hesitantly looked for information in the resource material they provide at my job, as well as trying to find places to go online that would help me understand the disorder. I also started talking with a coworker who has been diagnosed with the same disorder. I thought at first that my symptoms didn't match up, until I had a lengthy conversation with my coworker about it. What she described to me about how this affected her early on, and even now, lines up almost exactly with what I've been experiencing. Now that I have started to come to terms with this diagnosis, I have decided to make an effort to try to share my thoughts and experiences about this with all of you through this blog, hoping that this form of 'self-therapy' will also benefit others who are coming to terms with the same diagnosis, or suffer from any type of chronic pain. I plan to describe my journey in a bit more detail in my future blogs, in the hope that this will be as helpful for you as I intend.

Thanks for riding along.