Tuesday, November 24, 2009
What I told Dr. Oz.....
I have had fibromyalgia since 1997, long enough ago for me to develop coping skills so that I feel I no longer "suffer" from it, but simply live with it. During the first three years of my illness, however, I had not yet been diagnosed, and suffering was a pretty accurate term for what I went through. Prior to onset, I had been a healthy married woman who exercised regularly, ate a reasonable diet, and worked full-time in a relatively low-stress occupation.
The last day I experienced zero pain was April 19, 1999 when I was given morphine during a surgery, and of course, when the morphine wore off, the pain of the previous two years returned and never again has been completely eliminated. I experience several types of pain simultaneously: muscle, joint, tendon, nerve, etc. These can stem from injury or overuse, or from nothing at all. The pain response is way out of proportion to the cause: for instance, I can stub a toe, and the pain might spread up the foot, up the leg, maybe even into the back all the way up to the neck. Also, I will experience pain long after the source of it has healed. Example: pain at the site of a breast biopsy a year after the biopsy, and pain in teeth two years after a root canal. It is as though my brain forgot to tell my body that I have healed. Even stranger is getting a pain response to stimuli such as light, sound, smell or extreme fatigue. I get intractable migraines that last an average of six days.
But even though my baseline pain level is at least 6 on a scale of 1 to 10 on a daily basis, and even though there are times it gets to a level that would send most people to an emergency room, for me, pain is not the worst part of having fibromyalgia. If it were just pain, I could put up with it and find a way to function. It is the fatigue and cognitive dysfunction that have most altered my life.
Fatigue is actually a barely adequate word for what I experience daily. Debilitating unrelenting exhaustion is a better description. I often must rest 12 hours per day, and that is on a day when I don't do anything particularly taxing. I am so devoid of energy that I cannot drive for more than 45 minutes continuously because I will doze off at the wheel. I cannot walk further than one or two city blocks without rest and must use a wheelchair for longer distances. My husband must push the wheelchair as propelling it myself will cause even more pain and fatigue. Something as simple as a shower can wipe me out for the rest of the day. Except for going to water therapy and my husband driving me to church, I am rarely able to leave the house for long.
Even worse is the cognitive dysfunction. I have trouble finding words, both verbal and written, transpose numbers and letters, remembering and understanding instructions, recognizing people I have seen before, concentrating on a task, remembering what I have said, comprehending what I am reading. I will be speaking to someone and will forget mid-sentence or even mid-word what I am saying. I will make wrong turns driving to familiar places. I might misspell my own name, forget my phone number or put my keys in the freezer. My mental processing speed is slowed, and I can no longer do math in my head or write a poem. I once had a photographic memory, but I honestly believe I have lost probably 15 IQ points since becoming ill.
I have encountered great difficulty being understood by the medical community. While I have been fortunate enough to encounter some fantastic doctors, there have been enough who were rude, ill-informed and who caused me harm. I am generally an amiable person and not prone to grudges, but due to my unfortunate experiences with the medical community, I find myself unduly nervous and defensive around new doctors, even though I know this is counterproductive to proper treatment. I have been told the following by medical professionals, all of which has been untrue in my case: that I must have been a type-A personality, that I was lazy, that I had somatoform disorder because fibromyalgia isn't a real ailment, that I could be cured by vigorous cardiovascular exercise, that fibromyalgia is never disabling, that fibromyalgia is just another word for depression, that I was a non-compliant patient when I took prescribed medication that made me sicker.
Family and friends have been kinder with a few exceptions. There is one person who believes I got sick out of a need for attention and stay sick because I "dwell on" fibromyalgia by communicating with others about it and has even told me nobody cares about my illness, but I ignore the comments. A few people have implied that I got sick because I didn't have enough faith in a higher power and that all I needed to do was go to a certain faith healer. But my husband sees me every day and knows about those times the pain is so severe I can do nothing but cry, has seen me nearly faint from exhaustion, has had to remind me of what he told me five minutes ago. He gets mad sometimes, but I know he's mad at the illness, not me. And that's okay, because the illness angers me sometimes too.
The main thing I would like the public to know about this condition is that it is probably a central nervous system disorder and that it is systemic. It is not caused by negative thoughts or depression, although these can cause the person to feel worse once the ailment is already present. Finally, a patient's acceptance of the disorder does NOT mean they have given up on getting better, it simply means they have made peace with their condition if they are doing the best they can with whatever they have to work with.
The last day I experienced zero pain was April 19, 1999 when I was given morphine during a surgery, and of course, when the morphine wore off, the pain of the previous two years returned and never again has been completely eliminated. I experience several types of pain simultaneously: muscle, joint, tendon, nerve, etc. These can stem from injury or overuse, or from nothing at all. The pain response is way out of proportion to the cause: for instance, I can stub a toe, and the pain might spread up the foot, up the leg, maybe even into the back all the way up to the neck. Also, I will experience pain long after the source of it has healed. Example: pain at the site of a breast biopsy a year after the biopsy, and pain in teeth two years after a root canal. It is as though my brain forgot to tell my body that I have healed. Even stranger is getting a pain response to stimuli such as light, sound, smell or extreme fatigue. I get intractable migraines that last an average of six days.
But even though my baseline pain level is at least 6 on a scale of 1 to 10 on a daily basis, and even though there are times it gets to a level that would send most people to an emergency room, for me, pain is not the worst part of having fibromyalgia. If it were just pain, I could put up with it and find a way to function. It is the fatigue and cognitive dysfunction that have most altered my life.
Fatigue is actually a barely adequate word for what I experience daily. Debilitating unrelenting exhaustion is a better description. I often must rest 12 hours per day, and that is on a day when I don't do anything particularly taxing. I am so devoid of energy that I cannot drive for more than 45 minutes continuously because I will doze off at the wheel. I cannot walk further than one or two city blocks without rest and must use a wheelchair for longer distances. My husband must push the wheelchair as propelling it myself will cause even more pain and fatigue. Something as simple as a shower can wipe me out for the rest of the day. Except for going to water therapy and my husband driving me to church, I am rarely able to leave the house for long.
Even worse is the cognitive dysfunction. I have trouble finding words, both verbal and written, transpose numbers and letters, remembering and understanding instructions, recognizing people I have seen before, concentrating on a task, remembering what I have said, comprehending what I am reading. I will be speaking to someone and will forget mid-sentence or even mid-word what I am saying. I will make wrong turns driving to familiar places. I might misspell my own name, forget my phone number or put my keys in the freezer. My mental processing speed is slowed, and I can no longer do math in my head or write a poem. I once had a photographic memory, but I honestly believe I have lost probably 15 IQ points since becoming ill.
I have encountered great difficulty being understood by the medical community. While I have been fortunate enough to encounter some fantastic doctors, there have been enough who were rude, ill-informed and who caused me harm. I am generally an amiable person and not prone to grudges, but due to my unfortunate experiences with the medical community, I find myself unduly nervous and defensive around new doctors, even though I know this is counterproductive to proper treatment. I have been told the following by medical professionals, all of which has been untrue in my case: that I must have been a type-A personality, that I was lazy, that I had somatoform disorder because fibromyalgia isn't a real ailment, that I could be cured by vigorous cardiovascular exercise, that fibromyalgia is never disabling, that fibromyalgia is just another word for depression, that I was a non-compliant patient when I took prescribed medication that made me sicker.
Family and friends have been kinder with a few exceptions. There is one person who believes I got sick out of a need for attention and stay sick because I "dwell on" fibromyalgia by communicating with others about it and has even told me nobody cares about my illness, but I ignore the comments. A few people have implied that I got sick because I didn't have enough faith in a higher power and that all I needed to do was go to a certain faith healer. But my husband sees me every day and knows about those times the pain is so severe I can do nothing but cry, has seen me nearly faint from exhaustion, has had to remind me of what he told me five minutes ago. He gets mad sometimes, but I know he's mad at the illness, not me. And that's okay, because the illness angers me sometimes too.
The main thing I would like the public to know about this condition is that it is probably a central nervous system disorder and that it is systemic. It is not caused by negative thoughts or depression, although these can cause the person to feel worse once the ailment is already present. Finally, a patient's acceptance of the disorder does NOT mean they have given up on getting better, it simply means they have made peace with their condition if they are doing the best they can with whatever they have to work with.
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