Three Voices on Fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by Brian_Schmarje, Oct 15, 2002.

  1. Brian_Schmarje

    Brian_Schmarje New Member





    Chris was working at a high volume retail pharmacy as a pharmacy tech when she began to experience flu-like symptoms every other week. It wasn’t severe enough that she had to miss work but she went to the doctor. They tested her gall bladder. The symptoms cleared up for a time before becoming more serious later on. She started feeling terrible all the time and had pain in her back and legs. Then she began experiencing pain all over.

    She had to go to three different doctors before she got a correct diagnosis. Her first doctor was an intern, who seemed more interested in where he was going to do his residency. The doctor gave her something for pain for about two weeks after she convinced him that she needed to be able to go to work in order to pay her bill. The pain subsided but when it came back she decided to try another doctor.

    Several people recommended that she try a certain family doctor. The family doctor started her on a series of tests. He tried anti-inflammatory drugs and low doses of antidepressants to help her sleep. He sent her in for MRIs and physical therapy. It was a process of elimination and finally he didn’t know which way to go. He sent her to a rheumatologist.

    The rheumatologist compared notes from the family doctor and tested Chris in a series of trigger points located in the shoulders, hips, knees and elbows. A person who has pain in eleven of eighteen points has fibromyalgia. Chris was diagnosed with fibromyalgia.

    Studies by the American College of Rheumatology suggest that some 3 to 6 million Americans are affected by fibromyalgia or fibromyalgia syndrome. 80 percent of those affected are women. Some symptoms include: chronic pain, fatigue, sleep disorder, migraine headaches, increased sensitivity, cognitive or memory impairment, and increased muscle tension.

    Sleep disorders common to fibromyalgia are thought to be a major factor in the symptoms of fibromyalgia. FMS sufferers have trouble sleeping or don’t get enough deep sleep and wake up feeling stiff all over and unrested. A common treatment is to prescribe a low dose of anti-depressant so the patient gets the side effect of deep sleep. Deep sleep is crucial to tissue repair and antibody production.

    Fibromyalgia is not a new illness. William Balfour, a surgeon at the University of Edinburg, first described it in 1816. For many years it was called by different names and was thought to be psychological by some physicians. It wasn’t until 1987 that the American Medical Association recognized fibromyalgia syndrome as a true illness. The diagnostic pressure points weren’t defined
    until 1990 by the American College of Rheumatology. Fibromyalgia sufferers still encounter unsympathetic doctors who believe it is “all in their head”. Many have to go through two or three doctors before receiving the correct diagnosis.

    Doctors don’t really know what causes fibromyalgia syndrome. Although in some cases, there
    is an event that triggers the onset of symptoms such as a car accident or a viral or bacterial infection. Several theories have been postulated including neurotransmitter regulation, immune system function, sleep physiology and hormonal control. Jennifer a housewife with two kids, who suffers from FMS, said, “It’s a crap shoot as far as doctors treating this. Usually it takes three or four tries or more to get the right medication and dosage.”

    Fibromyalgia sufferers are more susceptible to other illnesses. As Jennifer puts it, “I catch every
    bug that comes down the pike. I get the flu. When I was a little kid I had hay fever something fierce but it
    went away. When the fibromyalgia and chronic fatigue hit it came back tenfold. The whole thing started when I had walking pneumonia and was down for a month. I dislocated my ankle a couple of years ago. It popped back in on it’s own but my ankle swelled up the size of a softball. Fibromyalgia attacks your joints and when your joint is damaged like that it’s absolute hell trying to recover because the pain is that much more extensive and intense.”

    People diagnosed with fibromyalgia got through a bargaining process that resembles the stages of grieving. Chris said, “It changed my whole life without my permission. There are stages you go through. There’s the talking about it all the time and then the anger. Then you come to accept it.” Jennifer said, “the big thing from an emotional standpoint is I have to not look at myself as a failure because I can’t do as much as I used to and that has been really tough.” Linda another FMS sufferer said, “I was sort of ashamed and didn’t believe it for a long time. You’re a different person. I don’t really like to acknowledge that I am less physically fit or capable than people in their 60’s. Maybe in the back of your mind you’ve always told yourself your going to run a marathon someday and you have to come to terms with your never going to do
    that. Then you have to come to terms with all the tiny things your never going to do”.

    Linda is a FMS sufferer who works in a drug treatment center. She compares fibromyalgia to mental illness, “It’s a disability that people don’t see and it’s very hard to explain. Also, a lot of times you appear normal and you feel fine. But there are a lot of times when you are incapacitated and you can’t do what you were able to do two weeks ago.” Fibromyalgia sufferers are often misunderstood. People don’t believe that they are sick. Chris said, “You really find out who your real friends are. There are a lot of people that just don’t call anymore I just try to understand that some people just don’t understand because they haven’t been there. I think they Just don’t believe I’m sick. But, I also have friends that don’t understand and are still my friends. You get looked down on a lot, especially by employers. At my job for
    the first five months it was okay but after that I could do nothing to please them. People just look at you like you’re a hypochondriac. It’s hard for people to have a relationship with me because we make plans and they get cancelled repeatedly. People lose patience with that too.”

    FMS affects different people differently. Some FMS sufferers are incapacitated to the point where
    they can hardly get out of bed. Others have to quit work and go on disability. Many are able to maintain
    employment but the general consensus among FMS sufferers is that they are doing their best just to do the bare minimum.

    Chris’s work experience showed that even a pharmacy could be unsympathetic of an employee with a chronic illness. For the first five months after she was diagnosed they seemed to accept it. Then coworkers began to complain because she was sick all the time even though she rarely missed work. They complained that she was late for lunches and breaks when she tried to be early. Her frequent trips to the bathroom brought about the comment that she was “like an old lady”. She thought the store manager
    believed she was making it up. She thought they were trying to make her quit.

    Her doctor took her off work and put her on disability for what she thought would be three months.
    After a period of time she thought she should at least try to go back to work before her benefits expired. She gave her employer notice that she was ready to go back to work. They waited until the last day before Her benefits had run out to tell her that she needed to reapply, by that time it was too late. She was convinced they did that on purpose.

    She said “I think it was a God thing that I got fired. People said I should try to fight it but I
    was just exhausted. Towards the end, I hated it so much.” The severity of her condition has prevented her from seeking other employment. Chris said, “People might think that I’m just saying my fibromyalgia is worse than what someone else has.” She has been on disability for four years now. She would like to return to work some day. “I think I have to for my sanity. I can’t imagine not working for the rest of my life. I’m 31 years old and I haven’t worked in four years. But, there has to be a lot more understanding with employers.”

    Linda works as a social worker at a drug treatment center. She still has to work forty hours
    a week but her job allows her to make her own schedule. She is trying to educate her employer on her illness. “It’s much easier going into a job if they know you have this condition than finding out you have it at a job your already in. Because, you're a completely different person not just physically but emotionally and I think people really just can’t tolerate the shift.” Her computer keyboard as well as her chair are ergodynamically designed. The hardest thing for her to do is typing. If she is having a bad day she can put off typing till she feels more capable. She said, “If I had to do any kind of repetitive motion that would be it. I’d be done and it wouldn’t even take three days.”

    Jennifer's husband has adapted to doing some of the things she once did without any problem. She
    finds that she really has to prioritize and make sacrifices. “There’s so much to do when you’re running a
    household and taking care of a family. I don’t have energy to do it all. If I decided to clean the bathroom then that means the laundry is not going to get done” She said. Her kids are adjusted to her illness because they were so young when she was diagnosed.

    People who suffer from fibromyalgia syndrome learn to cope with their illness. Jennifer said, “I
    learned to pace myself. If I have a really active day today that means I might be conked out in bed for the next three days”. For Chris it is her faith in God that helps pull her through. She tries to get out of herself and not be so focus on her illness. Linda said, “People think because its this crazy long name it’s something rare and it’s not. I think it’s just a reminder to take care of myself. I’m lucky my symptoms are rarely incapacitating. I feel like statistically I’m protected from getting something like multiple sclerosis. Fibromyagilia is not degenerative. It’s not going to kill you.”

    Chris, Jennifer and Linda have shared their experiences with fibromyalgia syndrome in hopes that the general public can become more aware of the disorder. Fibromyalgia is not new. Because the diagnostic criteria has not been set until very recently, that the general public is not yet aware of it. Science may never find a cure to FMS but they may learn to treat the symptoms better. A newsletter called Fibromyalgia Network keeps FMS sufferers aware of the latest research and developments. FMS suffers who educate themselves can help their doctors treat them. Hopefully, friends, employers and others who
    touch the lives of someone who has FMS can become educated to understand that when a person has fibromyalgia and can't do what they once did, they are not "making it up".

    bschmarje@yahoo.com
  2. Brian_Schmarje

    Brian_Schmarje New Member





    Chris was working at a high volume retail pharmacy as a pharmacy tech when she began to experience flu-like symptoms every other week. It wasn’t severe enough that she had to miss work but she went to the doctor. They tested her gall bladder. The symptoms cleared up for a time before becoming more serious later on. She started feeling terrible all the time and had pain in her back and legs. Then she began experiencing pain all over.

    She had to go to three different doctors before she got a correct diagnosis. Her first doctor was an intern, who seemed more interested in where he was going to do his residency. The doctor gave her something for pain for about two weeks after she convinced him that she needed to be able to go to work in order to pay her bill. The pain subsided but when it came back she decided to try another doctor.

    Several people recommended that she try a certain family doctor. The family doctor started her on a series of tests. He tried anti-inflammatory drugs and low doses of antidepressants to help her sleep. He sent her in for MRIs and physical therapy. It was a process of elimination and finally he didn’t know which way to go. He sent her to a rheumatologist.

    The rheumatologist compared notes from the family doctor and tested Chris in a series of trigger points located in the shoulders, hips, knees and elbows. A person who has pain in eleven of eighteen points has fibromyalgia. Chris was diagnosed with fibromyalgia.

    Studies by the American College of Rheumatology suggest that some 3 to 6 million Americans are affected by fibromyalgia or fibromyalgia syndrome. 80 percent of those affected are women. Some symptoms include: chronic pain, fatigue, sleep disorder, migraine headaches, increased sensitivity, cognitive or memory impairment, and increased muscle tension.

    Sleep disorders common to fibromyalgia are thought to be a major factor in the symptoms of fibromyalgia. FMS sufferers have trouble sleeping or don’t get enough deep sleep and wake up feeling stiff all over and unrested. A common treatment is to prescribe a low dose of anti-depressant so the patient gets the side effect of deep sleep. Deep sleep is crucial to tissue repair and antibody production.

    Fibromyalgia is not a new illness. William Balfour, a surgeon at the University of Edinburg, first described it in 1816. For many years it was called by different names and was thought to be psychological by some physicians. It wasn’t until 1987 that the American Medical Association recognized fibromyalgia syndrome as a true illness. The diagnostic pressure points weren’t defined
    until 1990 by the American College of Rheumatology. Fibromyalgia sufferers still encounter unsympathetic doctors who believe it is “all in their head”. Many have to go through two or three doctors before receiving the correct diagnosis.

    Doctors don’t really know what causes fibromyalgia syndrome. Although in some cases, there
    is an event that triggers the onset of symptoms such as a car accident or a viral or bacterial infection. Several theories have been postulated including neurotransmitter regulation, immune system function, sleep physiology and hormonal control. Jennifer a housewife with two kids, who suffers from FMS, said, “It’s a crap shoot as far as doctors treating this. Usually it takes three or four tries or more to get the right medication and dosage.”

    Fibromyalgia sufferers are more susceptible to other illnesses. As Jennifer puts it, “I catch every
    bug that comes down the pike. I get the flu. When I was a little kid I had hay fever something fierce but it
    went away. When the fibromyalgia and chronic fatigue hit it came back tenfold. The whole thing started when I had walking pneumonia and was down for a month. I dislocated my ankle a couple of years ago. It popped back in on it’s own but my ankle swelled up the size of a softball. Fibromyalgia attacks your joints and when your joint is damaged like that it’s absolute hell trying to recover because the pain is that much more extensive and intense.”

    People diagnosed with fibromyalgia got through a bargaining process that resembles the stages of grieving. Chris said, “It changed my whole life without my permission. There are stages you go through. There’s the talking about it all the time and then the anger. Then you come to accept it.” Jennifer said, “the big thing from an emotional standpoint is I have to not look at myself as a failure because I can’t do as much as I used to and that has been really tough.” Linda another FMS sufferer said, “I was sort of ashamed and didn’t believe it for a long time. You’re a different person. I don’t really like to acknowledge that I am less physically fit or capable than people in their 60’s. Maybe in the back of your mind you’ve always told yourself your going to run a marathon someday and you have to come to terms with your never going to do
    that. Then you have to come to terms with all the tiny things your never going to do”.

    Linda is a FMS sufferer who works in a drug treatment center. She compares fibromyalgia to mental illness, “It’s a disability that people don’t see and it’s very hard to explain. Also, a lot of times you appear normal and you feel fine. But there are a lot of times when you are incapacitated and you can’t do what you were able to do two weeks ago.” Fibromyalgia sufferers are often misunderstood. People don’t believe that they are sick. Chris said, “You really find out who your real friends are. There are a lot of people that just don’t call anymore I just try to understand that some people just don’t understand because they haven’t been there. I think they Just don’t believe I’m sick. But, I also have friends that don’t understand and are still my friends. You get looked down on a lot, especially by employers. At my job for
    the first five months it was okay but after that I could do nothing to please them. People just look at you like you’re a hypochondriac. It’s hard for people to have a relationship with me because we make plans and they get cancelled repeatedly. People lose patience with that too.”

    FMS affects different people differently. Some FMS sufferers are incapacitated to the point where
    they can hardly get out of bed. Others have to quit work and go on disability. Many are able to maintain
    employment but the general consensus among FMS sufferers is that they are doing their best just to do the bare minimum.

    Chris’s work experience showed that even a pharmacy could be unsympathetic of an employee with a chronic illness. For the first five months after she was diagnosed they seemed to accept it. Then coworkers began to complain because she was sick all the time even though she rarely missed work. They complained that she was late for lunches and breaks when she tried to be early. Her frequent trips to the bathroom brought about the comment that she was “like an old lady”. She thought the store manager
    believed she was making it up. She thought they were trying to make her quit.

    Her doctor took her off work and put her on disability for what she thought would be three months.
    After a period of time she thought she should at least try to go back to work before her benefits expired. She gave her employer notice that she was ready to go back to work. They waited until the last day before Her benefits had run out to tell her that she needed to reapply, by that time it was too late. She was convinced they did that on purpose.

    She said “I think it was a God thing that I got fired. People said I should try to fight it but I
    was just exhausted. Towards the end, I hated it so much.” The severity of her condition has prevented her from seeking other employment. Chris said, “People might think that I’m just saying my fibromyalgia is worse than what someone else has.” She has been on disability for four years now. She would like to return to work some day. “I think I have to for my sanity. I can’t imagine not working for the rest of my life. I’m 31 years old and I haven’t worked in four years. But, there has to be a lot more understanding with employers.”

    Linda works as a social worker at a drug treatment center. She still has to work forty hours
    a week but her job allows her to make her own schedule. She is trying to educate her employer on her illness. “It’s much easier going into a job if they know you have this condition than finding out you have it at a job your already in. Because, you're a completely different person not just physically but emotionally and I think people really just can’t tolerate the shift.” Her computer keyboard as well as her chair are ergodynamically designed. The hardest thing for her to do is typing. If she is having a bad day she can put off typing till she feels more capable. She said, “If I had to do any kind of repetitive motion that would be it. I’d be done and it wouldn’t even take three days.”

    Jennifer's husband has adapted to doing some of the things she once did without any problem. She
    finds that she really has to prioritize and make sacrifices. “There’s so much to do when you’re running a
    household and taking care of a family. I don’t have energy to do it all. If I decided to clean the bathroom then that means the laundry is not going to get done” She said. Her kids are adjusted to her illness because they were so young when she was diagnosed.

    People who suffer from fibromyalgia syndrome learn to cope with their illness. Jennifer said, “I
    learned to pace myself. If I have a really active day today that means I might be conked out in bed for the next three days”. For Chris it is her faith in God that helps pull her through. She tries to get out of herself and not be so focus on her illness. Linda said, “People think because its this crazy long name it’s something rare and it’s not. I think it’s just a reminder to take care of myself. I’m lucky my symptoms are rarely incapacitating. I feel like statistically I’m protected from getting something like multiple sclerosis. Fibromyagilia is not degenerative. It’s not going to kill you.”

    Chris, Jennifer and Linda have shared their experiences with fibromyalgia syndrome in hopes that the general public can become more aware of the disorder. Fibromyalgia is not new. Because the diagnostic criteria has not been set until very recently, that the general public is not yet aware of it. Science may never find a cure to FMS but they may learn to treat the symptoms better. A newsletter called Fibromyalgia Network keeps FMS sufferers aware of the latest research and developments. FMS suffers who educate themselves can help their doctors treat them. Hopefully, friends, employers and others who
    touch the lives of someone who has FMS can become educated to understand that when a person has fibromyalgia and can't do what they once did, they are not "making it up".

    bschmarje@yahoo.com
  3. tedebear

    tedebear New Member

    Your recent article summed it all up in a nutshell. Fibro is devastating to those of us who experience it. Working, functioning, day-to-day tasks are real challenges. Thanks for sharing that article with all of us.

    Soft hugs