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what is fibromyalgia?
From Good Living with Fibromyalgia, The Arthritis Foundation, 2006:
Your first hint of fibromyalgia may be aching, painful muscles, fatigue and disturbed sleep. Your shoulders hurt, and come to think of it, so do your knees and hips. Your sleep is troubled, and you can’t remember the last time you woke refreshed. You may have headaches and stomach pain, and just walking to the mailbox feels like more exercise than you can or want to manage. In many spots, even a little pressure feels painful. You take aspirin and you rest, but nothing seems to help much. Mostly, you feel miserable and bewildered: “What on earth is happening to my body?” you may ask yourself. Your physician may not be able to diagnose the cause of the symptoms at first, subjecting you to many tests that do not confirm the source of your problem.
I was diagnosed with fibromyalgia on Wednesday, April 26, 2006. I remember the date because that was the day a 3-month-long extremely intense “illness” finally had a name. I had been taking all kinds of pain pills for what we thought was perhaps some sort of inflamation or dislocation in my lower back. At that point, I had been on some very heavy pain pills for over 3 months ~ we’re talking morphine in pill form here, not just Tylenol #3 or Vicodin.
I had seen all kinds of doctors over the previous 3 months ~ a neurologist (who did some REALLY horrible tests), a neurosurgeon (who injected steroids into my epidural sac), a rheumatologist (who told me there was absolutely nothing wrong with me), orthopaedic doctors, several general practice doctors, and other assorted MDs. Some were military doctors, most were civilians. My Primary Care Manager (my regular doc) was at his wits end trying to help me feel better and figure out what was wrong with me. He assigned me to a “case worker” and started sending me to every specialist he could think of. The “case worker” assignment was actually a good thing ~ it meant that I had insurance approval for any doctor’s visits and most procedures simply by picking up the phone and placing a call. It also meant there was someone checking on me almost every day, asking how I was, what I needed, and what they could do for me. It wasn’t much, but it helped to know that the local medical staff I was working with really did care about what was going on with me.
My appointment on Wednesday, April 26 was with what I thought was a pain management specialist. Actually, he is a pain management specialist ~ that’s why my PCM sent me to him ~ but for me he turned out to be a lot more. He also happens to be the local expert on fibromyalgia, and our “chance meeting” arranged by my insurance company was nothing less than a God-send (literally).
Hubby and I were sitting in the treatment room, waiting for the doc to come in. I had worn loose clothing, as I typically try to do, and I had settled myself on the table, taken off my shoes, and leaned back against the wall. It was uncomfortable, since backpain was my major complaint, but it was better than trying to sit up straight.
We heard the doctor (I’ll call him Dr. S) in the hallway take my chart out of the holder and start to review it. He stepped into the room a minute or two later. After a brief moment in which he made a very thorough observation of my loose clothing, no shoes and fidgeting feet, he asked me why I was there to see him. I told him about the pain I was having in my back, and the other doctors and treatments I had already received. He looked me straight in the eye and said, “I don’t think you have a back problem. I do, however, think I know what the problem is, but let’s talk a little bit first.”
He started by asking me a question or two. Then the really freaky thing happened. He started telling me things about myself that he really should not have known. He told me about different habits I have, things I do, things I avoid, behaviors I exhibit and tendencies I have. He told me things that only Hubby or someone who has lived with me for a very long time would have known. Hubby and I sat there with our mouths open, wondering how he knew these things ~ he must have listed 30 different attributes of mine. Then he summed it all up in one sentence: “You have fibromyalgia.”
Hubby and I had done some research on the different symptoms I had been experiencing, and we had come across fibromyalgia in our research. It seemed a plausible diagnosis, but my PCM had been reluctant to even discuss the possibility. To be in this doctor’s office, a doctor who had never set eyes on me before, and be told straight out that I have fibromyalgia was a bit of a shock. But after listening to him tell me all about myself, it was really the only conclusion we could come to. He told me that he was a specialist/expert in the field, and that I was “lucky” to have stumbled into his office. I said it was a blessing, not luck.
Dr. S told me to stop taking all of the different pain medications I was taking, and to only take the new prescriptions he was going to give me. He said that most fibromyalgia sufferers are hypersensitive, and pain medications, especially the extremely strong kind I was on, only make the pain escalate. That made sense, since the stronger the pain meds I was on the more intense my pain became. I left his office with a handful of full prescription sheets, and several different types of medication samples.
Within a week I was beginning to feeling better. It was like I was a whole new person once I was off the really strong (narcotic) pain meds. My brain fog started to clear, the pain in my back was less, I felt better overall, I had more energy, and I was able to sleep for longer stretches than I had ever done before. It was amazing.
Since then I do believe the medications Dr. S put me on have helped things to improve. I still have flare-ups ~ days when I’m exhausted before I even get out of bed, or I have a lot of pain all over my body. Several of the symptoms of fibromyalgia are present daily (headaches, all over achiness, and fatigue tend to be the most regular problems for me), but overall I feel better. I try to wear loose clothing, and I only wear make~up when absolutely necessary (yes, even wearing make~up is uncomfortable, as strange as that may sound). I’m still taking several different medications, but the combination of these meds has helped to improve the quality of life for me and my family, so I don’t complain about taking them. I’m still in the discovery process ~ trying to figure out if I have any types of food triggers, what activities make me feel better and which ones make me feel worse, what my activity limits are, how much stress is too much for me, etc., etc. But at least I know now what to look for, and I can try to adjust my activities to accomodate my needs and limits.
Not having a diagnosis, or having the wrong diagnosis, was far worse than knowing I have fibromyalgia. We have been able to trace my fibromyalgia symptoms all the way back to my childhood. This diagnosis has explained a lot for me, especially why I don’t have the energy level or stress tolerance that my “normal” friends seem to have. But I count it all as a blessing. Knowing what I know now has made my life and my family’s lives so much richer because we know what to expect. And when I don’t feel well, I know I can count on it only being a temporary set back. I will feel good, I will feel well again another day, and that knowledge brings peace and joy into my life even when I’m exhausted and in pain.
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