As part of the nursing experience, we are taught that pain is the fifth vital sign right behind body temperature, heart rate, respiratory rate, and blood pressure. We are taught not to question a patient's subjective statement of pain. If a patient says he or she is experiencing 10 out of 10 pain, we do not question even if the patient was just having a raucous conversation on the phone with a friend.
When we leave school and start practicing our new profession, we become aware of how narcotic pain medications are administered very freely at times. Possibly you have rolled your eyes when a certain patient presses the call button on the dot around-the-clock when they are "due" pain medications. Maybe you have even used the term "frequent flyer" for those patients who are routinely hospitalized for "unexplained" pain.
Pain was a very foreign concept to me for the majority of my life until I arrived at the age of 45. Sure, my knees hurt once in a while after a very long shift on my feet, but for the most part I had no experience with the pain complaints I took care of every day. This made it especially easy for me to roll my eyes at the perceived pain of others. "Why can't these people just develop a thicker skin?", I would think. That is, I would think that way until July 31, 2007.
Isn't it funny how the most life-changing events can occur on the most unassuming and typical of days? I began the day with a feeling of "coming down with something." As the day progressed, I began to feel worse and ended up visiting the emergency room that evening with a generally achy feeling and awful malaise. I was sure I had the flu or maybe a secondary bacterial infection somewhere. After a battery of tests and x-rays, I received the diagnosis that would become all too familiar: "We can't find anything specifically wrong with you." I was given a liter of fluids IV and sent home.
"We can't find anything specifically wrong with you." I learned to dread these words. As the achy feeling of July 31 progressed into throbbing pain in my hands, arms, neck, and back, my quest for a definitive diagnosis also progressed. Beginning with my primary care physician and then through my adventures with rheumatology, neurology, chiropractic, massage, acupuncture, physical therapy, gallons of blood work, and 80,000 CTs and MRIs, my pain persisted and even increased.
This constant discomfort was accompanied by insomnia. I had never had a problem with that before. I'm a nurse. We fall asleep the instant our heads hit the pillow, fatigue, numbness in my extremities, headaches, and a difficulty concentrating that I now know by its familiar name, "brain fog." Yet, the diagnosis was always the same, "We can't find anything specifically wrong with you."
This pattern continued through the rest of 2007 and most of 2008: new doctors, more tests, no diagnosis (lather, rinse, repeat). Then, in mid 2008, a physician finally decided to deliver an official diagnosis, but it was not one I was especially fond of. A physician had come to a conclusion about my condition, and I will never forget when he muttered the "F-word". The dreaded diagnosis that most health care professionals consider to be a fake illness, an illness that is tossed around freely, mostly by those who hope to obtain pain medications. The F-word is Fibromyalgia. My spelling checker does not even recognize it as a valid word.
I literally cried when I was given that diagnosis. Have you ever wished that you had a "respected" disease so that your co-workers would understand why you can't work? "I'm sorry, I can't come in today. My rheumatoid arthritis is flaring up." That is an explanation they would respect. However, "I'm sorry, I can't come in today. My fibromyalgia is acting up." Yeah, that flies like a lead balloon. The typical reply would be "Oh, I'm sure you're just fine. You need to come in because we are shorthanded. Besides, you sound fine."
Maybe this treatment is payback for my own attitude. How often had I, as a nurse, rolled my eyes at a patient requesting pain medications because his or her fibromyalgia is acting up? I can recall thinking, "If you were really in pain, then the x-rays, CTs, or MRIs would show something. You are obviously just a drug seeker."
The most humbling nursing experience of my life was being diagnosed with the very condition that I had discounted and dismissed as a fake.
So what is a nurse to do? My health was so unpredictable that I couldn't possibly keep a set schedule. Fibromyalgia has been defined as being similar to a bank with regular deposits and withdrawals. Every so often generous deposits of "energy" and "well-being" are made to your account, and you can feel almost normal on those days.
However, you can also expect the inevitable withdrawals, and when they occur, that sense of well-being is taken away. The problem is that you never know when a withdrawal is going to take place. You can have an account full of energy one day, only to find your funds depleted the next, with no explanation, no warning. It's like the Bank of Fibromyalgia keeps its own hours, and this unpredictability made it very difficult to work in my chosen profession. There is no feeling like having every penny withdrawn from your energy bank and looking forward to three 12-hour nursing shifts in a row. I knew that I couldn't go on this way for another twenty years until retirement. Also, I had no desire to be dependent on pain medications in order to function. This is another story in itself as I did go down that road for a time. So what is a nurse to do?
I went back to school. In three-and-a-half years I was able to work through an online BSN program and a MSN program. This is not an easy task when you suffer from an unpredictable brain fog, headaches, and incessant body aches. However, through some dogged determination I was able to graduate. I have never regretted it. Since it was no longer possible for me to consistently work in my former areas of practice, my education has afforded me the ability to work in the capacity of a nurse educator. I will begin my Ph.D. program within a few months again online.
I may be one of the first Ph.D. nurses with a certified case of "brain fog," but I certainly will not be the last. More and more nurses who are experiencing this debilitating disorder are turning to education as their lifeboat in foggy, turbulent, unpredictable waters. And as we move forward, we take with us a new-found, hard-earned respect and empathy for those who suffer from in tractable, unexplained, and under-respected pain.
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