I have had a lot of trouble with the Fibromyalgia lately, so I decided to take my supervisor's advice and ask my doctor to fill out paperwork allowing me to take my sick days under FMLA (Family Medical Leave Act). This is a federal law that allows you to take up to 12 consecutive weeks off, or multiple days throughout the year, to recover from or manage an illness. I saw the doctor this past Monday, and was excited to learn that a medication commonly used to treat depression had recently been approved by the FDA to treat FM. He said that, among other things, it was found to have a positive effect on the peripheral nervous system receptors, which is suspected to be part of the problem for FM sufferers. I was very excited to hear this, and thought to myself that I might be able to get a part of my life back that I had recently lost to this condition. He sent a prescription order to the pharmacy and had me leave the FMLA forms with his medical assistant. I asked my husband to pick it up for me the next day, and took my first pill that evening.
At this point, I was dealing with a new pain which I had thought was a migraine, but my prescription migraine medicine hadn't affected it at all, even after taking the maximum dosage allowed. I realized how good this medicine was for FM, when just 30 minutes after taking it, the pain I was experiencing was gone! I could not believe how quickly and thoroughly it had resolved my pain.
I should point out that, based on the way I had reacted to another medication last year, I was cautious and had read about the side effects online before taking it, but when I was reading the insert that came with it (after taking my first dose), I noticed there were precautions for those who were also taking migraine medication. I got back online to review drug interactions, and became concerned that my particular medicine could interact in such a way as to cause a severe adverse reaction that could lead to death, if the signs were overlooked and counter measures not taken promptly. I read what it said to watch for, and started making mental notes of everything unusual.
The first day I took it, I developed a mild nausea, and noticed that I felt as though I was dreaming at some points, for brief periods. I presume that this was in part because the medication is in a time-release capsule form, and every time a little more of the medication went into my system, I would feel my body respond to it. The next morning, I decided to wait until I was at work to take it, so that it would not affect my driving ability, and that I would take the second dose I was supposed to take when I got home. While at work, I noticed that there were times where I felt that dreamy feeling, as well as times when I felt I couldn't concentrate or maintain focus. The nausea, however, had remained constant from the first dose. I also had occasional trouble following other people's lines of thought. When I got home and took my third dose, all these symptoms were still present, and I experienced my first serious side effect from the medication.
That evening, I was typing a comment to someone on my Facebook page, when suddenly, my left arm developed a mind of its own. Bap!Bap!Bap! went my left hand on the keyboard. I thought, of course, "this isn't good." I had read that tremors and involuntary movements were side effects of the medication, so I decided I should probably talk to my doctor in the morning about this. I continued my typing, and it happened again. Later, after I had given myself a break, I was typing something else, and it happened a third time. By now I was completely annoyed with my arm and decided to hang up the keyboard for the night.
When I got up Thursday, I didn't really feel well. In fact, I didn't really feel like myself, but I went into the kitchen to get ready for my day. I noticed that I felt a bit weak, and as if I had run a marathon and gotten winded. I also noticed a bit of a flutter, but thought nothing of it at the time. I tried to push through these feelings, and started making my breakfast and lunch for the day. I got my oatmeal in a bowl and my teabag in a cup, then proceeded to start making my sandwich. I got the bread out and cut, and the lettuce rinsed and dried. Then I had to sit down. For 10 minutes. I got up and tried again, and got the meat and cheese out, then I had to sit down again. I had almost finished making my sandwich, and I had the same feeling come over me, and had to sit down one more time. I felt my breath was gone, and as though I was gasping for air. That's when I knew it was time to go to the emergency room.
I called my husband, who was away since Wednesday visiting his Mom, after waking my son to tell him to get ready to take me to the hospital. I started to get dressed to go, and that's when I felt my very first, ever so slight, twinge of pain in my chest. "This is really not good," I thought. After my son helped me to take care of our cats and our dog, we got in the car and headed to the emergency room. Once there, I went up to the window and explained my symptoms and added, "I think I'm having a bad reaction to my new medicine." The young man at the window poo-pooed the idea, saying it would have happened on the day I first started taking it, if it were that. I thought, "Fine, Mr. Know-it-all-who-isn't-even-a-doctor, I'll just list my symptoms on the form and let you guys figure it out."
After returning the paperwork, I was taken into the triage area, where the nurse there asked me, "What do you think is going on? You look fine to me." I shot her a look and again explained my symptoms. She went through all the normal questions, did I smoke or drink etc., and wrote down my responses. She then turned over the paperwork to another nurse and continued to go over my symptoms and history, asking me what else I had besides depression, since my medication was for depression. Another look, and I explained, politely, that I have FM and that the doctor had prescribed this medication for it, based on the FDA approval. Then she asks again, do I smoke or drink. I look at her. The guy who was helping looks at her with a "gotcha" grin on his face, and says quietly, "No, she doesn't. It's right here where you wrote it."
After eating a bit of humble pie, Nurse Attitude takes my vitals, then preps me for an EKG. A tech comes in and administers the test, then the male nurse points me to some chairs where I need to wait for blood draw. After that, I was led to the bed they were assigning me for the moment. A few more questions, a blood pressure cuff and a pulse rate sensor, then the doctor finally comes in and interviews me for more information. He told me he didn't find anything medically to base my symptoms on except for the new medicine, but was going to have a chest x-ray done and run some other tests to be sure. When all was said and done, that was the final diagnosis - medication side effects. I was sent home with more papers and instructions, and told only to go to work if I felt up to it. I called my doctor once I got home and left a message, and he was supposed to call me back that evening, but here we are into the weekend and he still has not called.
I was able to work Friday, but still had some difficulty with shortness of breath and weakness, so I kept my movements slow and relaxed to avoid additional problems. I haven't taken any of the new medicine since Wednesday night, but it was still working its way out of my system Friday. I am not feeling any of the symptoms now, so I'm certain, since today is the day it should be fully washed out of my system, that everything I experienced starting on Tuesday was a direct result of the medication, and I have no plans to take any more of it. I also plan to call my doctor on Monday to find out why he hasn't called me back to discuss things like trying a different medicine.
Yesterday, I was going over the written instructions that the hospital gave me about my aftercare, and found an interesting notation: "Continue to take all medication." Yeah, right.
Showing posts with label FM. Show all posts
Showing posts with label FM. Show all posts
Saturday, September 25, 2010
Friday, July 16, 2010
From Ignorance to Understanding
It has been a while since my last blog entry, so I thought it was time to touch base again. I've decided to start this off with the history of my "evolution of understanding" of FM.
When I first heard, in the course of my work, there was a disorder by the name fibromyalgia, I had no clue about what it was or how severe it could be. By the sound of the name, I concluded it probably had something to do with muscle or nerve fibers, and some form of pain. I did not know what the source or cause of the pain could be, or what body parts were affected.
Any time we have doctors providing a new diagnosis that we are not familiar with and cannot get info about through our own resources, we generally tend to send people to doctors our agency pays for, to get a second opinion and get more information about the disease. When that was the case for this disorder, I sent a few patients to doctors for additional information. In some cases, the doctors felt there was no reason the patient could not work, while in others, the doctors felt the patient needed much more time off and should be evaluated for what they believed would be a more definitive diagnosis. I believe they were looking for traditional diagnoses like lupus, osteoarthritis, rheumatoid arthritis, or something similar to these, since so many symptoms of fibromyalgia mimic these conditions.
In one instance, I happened to speak with one of the doctors we use. He described fibromyalgia as, in his opinion, a psychosomatic "designer diagnosis" in which the patient would benefit much more from psychiatric care than treatment with an internist. At the time, not knowing much at all about the disorder, I accepted his evaluation almost as gospel, and began viewing claims with this diagnosis with a more critical eye. I wanted to send these patients to psychiatric evaluations, based on what that doctor told me, but the rules state we can only send them to the type of doctor that would normally treat the defined illness or injury, which was always either an internist or rheumatologist.
Not realizing I was already showing signs of this very illness, I began to believe that these patients were either faking or manifesting symptoms due to some deep-seeded emotional issues they weren't dealing with. It took several years for this opinion to change, through training and resource updates, along with what I learned through personal interviews with affected patients. I eventually came to realize how seriously this condition affects people, and noted (as found in my research once I was diagnosed) that it affects women more often than men.
After realizing that FM was a definite, often debilitating, genuine diagnosis, but before knowing I had it, I met a lady at the church we attended who has it. I was cautioned not to hug her too tight, as she is often in a lot of pain. I later met another woman with it, when I began participating in a monthly game with some ladies in the community. Then a woman transferred to our office who had been diagnosed with it as well, and I started to see the daily struggles of a fibromyalgia sufferer. I really felt for her, because I could see her struggling to continue to work a regular schedule, but often being struck down either by the associated depression or just debilitating pain that would not allow her to continue to work during the course of a day. She became one of my primary resources when I began to research after my initial diagnosis, and shared with me that yet another woman I already knew, who worked as a manager in another office, also has FM. I have been amazed at the number of people I am acquainted with or know, who have this condition besides myself.
Me and my coworker/co-sufferer.
In speaking with my coworker, I came to find that her path to understanding the disorder was not much different than my own. In fact, we joked about "payback," finding humor in the somberness of our condition. She shared with me some of the odd symptoms she had had early on, and how, like me, she didn't think her symptoms lined up well enough for it to be FM, but later found they were just early signs of the disease, which now is quite evident to her. We have in common that we denied having this condition initially, and later had to face facts about it being a part of our lives. She has even shared with me a bit of the history of her going through the rule-out phase, which was a bit different than mine because she gets her care through a medical group, while my care is through a private practice doctor. Each has a different method of doing what results in the same thing; evaluation, diagnosis, treatment.
I have also spoken with the lady in the group I participate with for a monthly get-together, in which we play a game (Bunco, sort of like Yahtzee but not). She has shared of some others she knows with FM and are in much worse shape than we are, and the stories she shared quite honestly, have made me very nervous. I have tried to speak with my church friend about it, but she seems to be reluctant, most likely because many of us find ourselves becoming unreasonably depressed when the realization comes across us about how much worse things could get or have become. To explain; one of the clients who I have encountered recently, appears to be close to the point of being permanently disabled from working due to the severity of her pain. She has to take narcotics to dull the pain, and is still so miserable it is hard for her to get out of bed. It is a horrifying thought to think that I might end up in just as much pain, if the symptoms progress.
Finally, I am realizing how widespread FM is, because even since becoming a member of a social networking site, I have encountered several women who have it, at varying degrees. I have been hoping that I would meet more through my blog, but so far no one has come forward to comment about their own condition and share how it has affected them.
Many of my posts to now have been going over things from a historical perspective, to explain how I came to determine my topic for a blog of any kind and why I believe I should write this blog. From this point on, I expect my posts to be about what I experience as a result of having this, including symptoms, nuggets of wisdom through self-education, and interaction with others in the FM community. If you feel you have something to contribute to discussions on this topic, or even simple words of encouragement, by all means please leave a comment below. Feedback is most definitely welcome!
When I first heard, in the course of my work, there was a disorder by the name fibromyalgia, I had no clue about what it was or how severe it could be. By the sound of the name, I concluded it probably had something to do with muscle or nerve fibers, and some form of pain. I did not know what the source or cause of the pain could be, or what body parts were affected.
Any time we have doctors providing a new diagnosis that we are not familiar with and cannot get info about through our own resources, we generally tend to send people to doctors our agency pays for, to get a second opinion and get more information about the disease. When that was the case for this disorder, I sent a few patients to doctors for additional information. In some cases, the doctors felt there was no reason the patient could not work, while in others, the doctors felt the patient needed much more time off and should be evaluated for what they believed would be a more definitive diagnosis. I believe they were looking for traditional diagnoses like lupus, osteoarthritis, rheumatoid arthritis, or something similar to these, since so many symptoms of fibromyalgia mimic these conditions.
In one instance, I happened to speak with one of the doctors we use. He described fibromyalgia as, in his opinion, a psychosomatic "designer diagnosis" in which the patient would benefit much more from psychiatric care than treatment with an internist. At the time, not knowing much at all about the disorder, I accepted his evaluation almost as gospel, and began viewing claims with this diagnosis with a more critical eye. I wanted to send these patients to psychiatric evaluations, based on what that doctor told me, but the rules state we can only send them to the type of doctor that would normally treat the defined illness or injury, which was always either an internist or rheumatologist.
Not realizing I was already showing signs of this very illness, I began to believe that these patients were either faking or manifesting symptoms due to some deep-seeded emotional issues they weren't dealing with. It took several years for this opinion to change, through training and resource updates, along with what I learned through personal interviews with affected patients. I eventually came to realize how seriously this condition affects people, and noted (as found in my research once I was diagnosed) that it affects women more often than men.
After realizing that FM was a definite, often debilitating, genuine diagnosis, but before knowing I had it, I met a lady at the church we attended who has it. I was cautioned not to hug her too tight, as she is often in a lot of pain. I later met another woman with it, when I began participating in a monthly game with some ladies in the community. Then a woman transferred to our office who had been diagnosed with it as well, and I started to see the daily struggles of a fibromyalgia sufferer. I really felt for her, because I could see her struggling to continue to work a regular schedule, but often being struck down either by the associated depression or just debilitating pain that would not allow her to continue to work during the course of a day. She became one of my primary resources when I began to research after my initial diagnosis, and shared with me that yet another woman I already knew, who worked as a manager in another office, also has FM. I have been amazed at the number of people I am acquainted with or know, who have this condition besides myself.
Me and my coworker/co-sufferer.
In speaking with my coworker, I came to find that her path to understanding the disorder was not much different than my own. In fact, we joked about "payback," finding humor in the somberness of our condition. She shared with me some of the odd symptoms she had had early on, and how, like me, she didn't think her symptoms lined up well enough for it to be FM, but later found they were just early signs of the disease, which now is quite evident to her. We have in common that we denied having this condition initially, and later had to face facts about it being a part of our lives. She has even shared with me a bit of the history of her going through the rule-out phase, which was a bit different than mine because she gets her care through a medical group, while my care is through a private practice doctor. Each has a different method of doing what results in the same thing; evaluation, diagnosis, treatment.
I have also spoken with the lady in the group I participate with for a monthly get-together, in which we play a game (Bunco, sort of like Yahtzee but not). She has shared of some others she knows with FM and are in much worse shape than we are, and the stories she shared quite honestly, have made me very nervous. I have tried to speak with my church friend about it, but she seems to be reluctant, most likely because many of us find ourselves becoming unreasonably depressed when the realization comes across us about how much worse things could get or have become. To explain; one of the clients who I have encountered recently, appears to be close to the point of being permanently disabled from working due to the severity of her pain. She has to take narcotics to dull the pain, and is still so miserable it is hard for her to get out of bed. It is a horrifying thought to think that I might end up in just as much pain, if the symptoms progress.
Finally, I am realizing how widespread FM is, because even since becoming a member of a social networking site, I have encountered several women who have it, at varying degrees. I have been hoping that I would meet more through my blog, but so far no one has come forward to comment about their own condition and share how it has affected them.
Many of my posts to now have been going over things from a historical perspective, to explain how I came to determine my topic for a blog of any kind and why I believe I should write this blog. From this point on, I expect my posts to be about what I experience as a result of having this, including symptoms, nuggets of wisdom through self-education, and interaction with others in the FM community. If you feel you have something to contribute to discussions on this topic, or even simple words of encouragement, by all means please leave a comment below. Feedback is most definitely welcome!
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