Gotta Read This Article From June Psychology Today

Discussion in 'Fibromyalgia Main Forum' started by techno, Jul 31, 2005.

  1. techno

    techno New Member

    Check this out folks...........

    Is it all in my head? With diseases like chronic fatigue syndrome and fibromyalgia, what you believe about your illness influences how sick you become

    Psychology Today, May-June, 2005 by Melissa Schorr

    TWO DECADES AGO, CAROLE HOWARD was a highly driven academic, simultaneously pursuing a master's degree from Loyola University in Chicago and serving as a college administrator--until the fateful morning when she got out of bed feeling not quite herself. "I woke up one day in a lot of pain," Howard recalls. "I thought I had the flu."

    If only it were that simple. Her aching muscles and sluggishness kept her in bed for weeks, and never really went away. Howard was eventually diagnosed with fibromyalgia and chronic fatigue syndrome, two devastating chronic ailments that crippled her academic career and landed her on full-time disability. "You can live with this," says Howard, 61, who now serves as president of the Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivities Coalition of Chicago. "But you have to accept doing half of what you used to do. I have a two-hour limit before I need to sit or lie down."

    Beyond accepting her physical limitations, one of Howard's biggest challenges has been dealing with people who doubt that her illness is real. "My family was never supportive," she says. "There were a lot of derogatory comments." Even today, when knowledge about these diseases is much more widespread, Howard still encounters skeptics. Recently, a woman helping her around the house dismissively told her: "You're not sick--you don't look sick." "I just went ballistic," Howard recalls. "I was so enraged."

    Capping her frustration, Howard cannot be sure to this day why she became ill. But her best guess is that the self-imposed stress of her ambitious lifestyle played a role. "I didn't know what a vacation was," she recalls. "I never stopped. I didn't realize there was a difference between the Energizer Bunny and me."

    Howard's suspicions are confirmed by many researchers, who are coming to believe that psychological factors play a crucial role in perpetuating many physical illnesses, particularly a subset of chronic ailments that defy logic, diagnosis or a cure. It seems that the way you think about your illness can actually affect how sick you get.

    These "multi-symptom illnesses"--which include chronic fatigue syndrome, fibromyalgia and potentially others such as Gulf War syndrome, irritable bowel syndrome and the condition known as multiple chemical sensitivity--have provoked intense controversy. Because they have no obvious biological cause, some doctors and researchers dismissed them in the past as hysteria or the "yuppie flu."

    Many patients, in response, became equally determined to prove that their disease was just as real and as biologically legitimate as heart disease or breast cancer. Those who have watched a close friend or family member with one of these syndromes can find themselves wondering: Is this real? Is she making this up? Patients themselves fear the worst: Will I ever get my life back? Will no one believe me? Is it all in my head?

    "The big challenge is credibility," says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a patient advocacy group. "The illness is still not well understood, and when people don't see anything unusual about you, they question whether you're sick or not."

    In recent years, the war between doubters and advocates has waned. The new consensus is that these illnesses are truly mind-body diseases, in which biological and psychological causes and dysfunctions are inseparably intertwined. The mind seems to play a key role in kick-starting and perpetuating illness--but it's not that sufferers are simply malingerers. Their bodies are sick, and their reaction to the illness often makes it worse.

    "Anybody who has a chronic illness has alterations in biological and psychological mechanisms," says James F. Jones, M.D., a chronic fatigue expert with the U.S. Centers for Disease Control and Prevention. "You really can't separate the brain and the body, because psychology is biology--everything that takes place in the brain is chemical or electrical. You can't have the one without the other."


    For the estimated 800,000 Americans suffering from chronic fatigue and the 3 to 6 million with fibromyalgia, the symptoms are all too physical--as debilitating as flu, and as persistent as tuberculosis. The diseases disproportionately affect women: Nearly 90 percent of fibromyalgia patients, and two-thirds of CFS sufferers, are female. Patients diagnosed with chronic fatigue have endured six months of complete exhaustion, plus a cluster of debilitating symptoms: They grow forgetful. Hurt when they swallow. Suffer throbbing headaches. Toss and turn in their sleep. Those with fibromyalgia may also suffer fatigue, but mainly describe inexplicably aching joints and muscles across their entire body.

    But although these diseases are among the more extensively researched of these chronic disorders, patients may still flounder for years searching for an explanation. Symptoms are broad and diffuse, and the diseases have no reliable test, so a diagnosis is usually made by ruling out everything else.

    In the search for the cause, researchers have turned up some significant biological abnormalities among chronic fatigue sufferers: Stress hormones, brain scans and immune system measures often show characteristic differences compared to healthier populations. Researchers haven't given up looking for an underlying infections cause, since sickness can be misleading--asthma and ulcers, for example, were only recently understood to be primarily physical diseases. At one point, the Epstein-Barr virus, which infects nearly all adults, was thought to be a culprit in CFS or fibromyalgia. But this early lead, and others, have fizzled.

    Doctors suspect that by continuing to focus on an elusive biological cause, they could be missing out on the other half of the picture--and the chance to find a solution. They have begun to reexamine the role of severe stress, depression and even personality traits in initiating and fostering disease.

    Some of the evidence is hard to dispute. For example, those suffering from chronic fatigue or fibromyalgia are significantly more likely than healthy people to have experienced depression, anxiety, physical abuse or a life-altering stressful event well before they developed their disease. In one study conducted by Wayne Katon, professor of psychiatry at the University of Washington in Seattle, 90 percent of fibromyalgia patients had a prior psychiatric diagnosis. Another study, at the University of Leeds, found that patients who had developed chronic fatigue were nine times more likely to have suffered stressful events and difficulties in the three months before the onset of disease than were healthy subjects. The implication is clear: Unlike other diseases, these disorders are closely connected to psychological distress, whether it takes the shape of a major psychiatric disorder or simply poor coping mechanisms.


    Still, it's clear that chronic fatigue is not just a bodily manifestation of clinical depression. While those who are depressed often are tired, and those who battle any chronic illness tend to grow depressed, the two are clearly distinct. Clinical depression doesn't usually result in a sore throat or post-exercise fatigue, and antidepressants aren't generally good treatments for CFS. "Depression and fatigue are fundamentally different," says Leonard Jason, a professor of psychology at DePaul University in Chicago. "If you ask a person who is depressed, 'What would you do tomorrow if you were better?' they say, 'I don't know.' Chronic fatigue sufferers will give you a list of 10 things."

    The body's stress response may be crucial to triggering diseases like chronic fatigue. Stress activates the body's hypothalamic-pituitary-adrenal axis, leading to a surge of the hormone cortisol, which suppresses the immune and other bodily systems. If some outside agent such as a viral infection comes along during a period of high stress, the system may overreact or even spiral permanently out of whack.

    "Most patients will tell you they had a history of being under a lot of work-related stress, or struggling with anxiety or depression, and against that backdrop, a second event happened--a car accident or a viral infection," notes Dedra Buchwald, an internist at the University of Washington's chronic fatigue clinic in Seattle.

    For Laura Hillenbrand, author of the best-selling book Seabiscuit and noted chronic fatigue advocate, long-standing sickness began with a common illness--and a shock, while a junior in college, she was traveling with friends down a country road late at night when a deer darted in front of the car. Though the driver swerved and avoided the collision, for passenger Hillenbrand, the traumatic experience was followed almost immediately by nausea, fever and chills. That night, she was diagnosed with a nasty bout of food poisoning. It was followed by weeks of extreme lethargy, leaden limbs and weight loss--symptoms that have never fully abated.

    Did the fright of that evening's near-miss undermine her body, rendering her vulnerable to food poisoning? "I really don't know," muses Hillenbrand, who wrote her best seller largely from her bed. "It is my belief that CFS is an opportunistic disease that preys on bodies that are compromised. It is an interesting coincidence that I began to feel the symptoms just a moment after that experience of extreme stress."


    Wayne Katon, whose research focuses on depression, anxiety and somatoform disorders, makes the case that stress and anxiety play a primary role. In his view, personality doesn't just create a hospitable environment--it's an integral part of the diseases. He believes that the initial injury or illness is almost irrelevant, what really matters is the interpretation and emotional reaction. Patients develop what he calls "catastrophic cognitions": beliefs that if they start to get back to their activity, they will damage themselves further.

    According to Katon's clinical observations, patients with chronic fatigue or fibromyalgia tend to be highly driven overachievers unaccustomed to feeling any loss of control. When injured or sickened, those who decide that the pain or illness has overwhelmingly and permanently damaged their bodies come to feel victimized and unable to cope. Learned helplessness sets in, and patients can find themselves perpetually depressed and inactive. "They have trouble getting back to that old lifestyle, and what sets in is depression," Katon suggests. "In our modern society, for people who have driven themselves, fatigue becomes a palatable way out of a difficult existence." Although Katon is well regarded in the field, this perspective is still widely debated, at conferences, in medical journals and even by peers at his own medical center.

    However, some patients do describe their experience in similar terms. "Stress seems to be the killer," Howard admits. "That's what I think happened with me. I was a superachiever and a perfectionist. I was going to make it, no matter what. I didn't anticipate the consequences."

    Fear of further damage and disability may keep patients from trying to get back to an active life. "Whatever caused this impairment is probably not what's keeping it going," Katon says. "what's keeping it going to a large extent are the misbeliefs about getting back to an active lifestyle."

    Indeed, Hillenbrand had come to anticipate disaster when she tried returning to a normal life. "I had learned to expect complete collapses each time I overextended myself," she recalls. "As I began to slide into exhaustion, I would anticipate how I would soon be unable to sit up and speak, and I would become very frightened. The anxiety I experienced as I slid into collapse would feed my exhaustion, and I would become still weaker."


    Hearing talk of "learned helplessness" can be very frustrating for chronic fatigue and fibromyalgia patients, many of whom would like nothing better than to get back to an active life. Accepting that psychology plays a role in these diseases does not mean that patients should just "will" themselves out of illness. The best treatments seem to be highly structured interventions that help patients change the way they think and behave, including cognitive and emotional therapy. For example, graded exercise therapy encourages chronic fatigue sufferers to return to activity at a carefully measured pace, much like physical therapy following hip replacement. Patients are encouraged to try walking a few extra blocks each day, instead of trying to run three miles on a "high-energy" day and risking a relapse.

    More than merely instilling a positive attitude, cognitive-behavioral therapy teaches patients to reframe their expectations about what will happen if they exert themselves. Researchers at Oxford found that 73 percent of CFS patients receiving cognitive behavioral therapy for a year returned to relatively normal physical functioning, compared with 27 percent who had standard medical care or relaxation.

    Those who refuse to accept the value of psychological therapies can get stuck. Some sufferers continue to seek physical proof that something has gone terribly awry, such as a virus, an environmental toxin or a faulty gene. "Patients seem to think if [their disease[ is psychiatric, it makes them less legitimate, it makes their problems less real," says CFS researcher Arthur Hertz, a professor of family medicine at the University of Iowa. "But nobody with any sense blames this on the patients."

    Patients with chronic fatigue who attribute their illness solely to external causes, such as a virus, seem to stay sicker than those who acknowledge the possible interplay of psychological factors. "Your beliefs about the illness are important," says Buchwald. "If you're wedded to an idea that your illness has a single specific cause, your chances of getting better are diminished, because you're not addressing parts of the illness that could be prolonging it." Instead, she suggests, patients should focus on actively following treatment advice and avoiding social isolation.

    Because beliefs have such a powerful impact on well-being, the techniques that people use to cope with other diseases can backfire in the case of chronic fatigue. Ironically, patient advocacy groups may be more harmful than helpful, studies have suggested, possibly by reinforcing a sense of victimization or by giving misguided advice, such as actively discouraging all exercise.

    "The support groups are very anti-psychological," says Katon. "A lot of times they act to inadvertently reinforce illness beliefs [such as fear of relapse or exhaustion] that are potentially harmful to patients." Those in support groups often report more severe illness, and say that they feel worse since joining the group than do dropouts. Critics dispute these findings, saying that dropouts leave because they feel better. However, research suggests that members are just as likely to drop out because they have grown too sick to attend as because they have improved.

    Pat Fero, executive director of the Wisconsin chapter of CFIDS, remains skeptical of the value of psychologically based therapies. She points out that a good attitude alone isn't going to make symptoms vanish, and she doubts that cognitive therapy would improve her chronic fatigue. "If you're feeling negative about everything around you, yes, you're going to feel worse," she says. "But the opposite is not necessarily true: If you improve the state of your mind, it doesn't mean you'll cure yourself."

    Hillenbrand, however, credits cognitive therapy with showing her how to reshape her expectations in ways that have made it easier to cope. "I have learned how to replace those fearful thoughts with more positive ones--'I don't have to collapse'; 'This will soon pass,' "she says. 'As a result, while I still experience those collapses, they are often less severe and briefer than they once were. I have been able to live a better, happier life."

    MELISSA SCHORR is a freelance health writer based in Seattle. She has written for Working Mother, WebMD and Reuters Health.

  2. CFIDSNicole

    CFIDSNicole New Member

    This has been posted a few times--I think just last week. It caused quite a stir. Lots of CFIDS docs, patients, advocates, and researchers wrote in letters to the editor that were published in the following issue, I believe, stating that this was not a well-researched, un-biased article.

    I think one could find the followup responses on the magazine's website. I read them somewhere, but can't remember where ??? My brain is kind of out the window today. :)

  3. backporchrags

    backporchrags New Member

    explain the people who have had this DD from early childhood?? I have had FMS all of my life. I remember the first symptoms affecting me at age 4. I know at 4 I was not stressed and was not depressed. But the pain, stiffness and fatigue was there.
  4. techno

    techno New Member

    It's 2005 and they are still dismissing us as hypochondriacs,
    neurotics and people who need psycho analysis to cure our
    They just do it in a more gentle manner.

    The damage done to us by this article is incalculable.
    The more things change the more they remain the same.

    Will we ever be acknowledged as truly ill.
    What a travesty!

  5. Mikie

    Mikie Moderator

    The just don't get it!

    They sit in their lofty ivory towers and think they know all about us and then they publish it. There is no doubting that psychological factors play into how we feel just like they do with anyone who has suffered any life-altering illness. But, "learned helplessness?" Give me a break.

    I do everything I can to try to return to a normal life and I expect every treatment to work that remain optimistic that someday, I will be well. That does not sound like learned helplessness to me. I resent their generalizing and placing this label on me--it does not fit.

    Articles like this do so much damage to us in terms of how the public, our families, and our doctors view us. I wonder how heart attack and cancer patients would feel if this kind of crap were published about them.

    Love, Mikie
  6. CFIDSNicole

    CFIDSNicole New Member

    The CFIDS Association of America condemns this article--here's a link from their website.

    I know I read some letters to the editor in response to this article, but I haven't been able to find them. If I do, I'll be back.


    Edit: what I read was originally a post from Tansy on this site. I am not sure if the letters were a response to this article or another article by the same woman. If so, what has she got against us?
    [This Message was Edited on 08/01/2005]
  7. tandy

    tandy New Member

    I have no doubts that our thoughts truly shape our lives/futures~
    We are what we think. ??

    I do think dwelling or being obsessed with having these DD stirs up high anxiety.
    But its not all mind over matter.
    If we could "BELIEVE" ourselves better, then I should be cured.
    Its not a fix all,...but possitive affirmations do help(not just with illnesses,..but with every aspect of life)

    This was interesting to me~Thanks for sharing this.
    Tandy :)
  8. Leenerbups

    Leenerbups New Member

    "Did the fright of that evening's near-miss undermine her body, rendering her vulnerable to food poisoning? "I really don't know," muses Hillenbrand, who wrote her best seller largely from her bed. "It is my belief that CFS is an opportunistic disease that preys on bodies that are compromised. It is an interesting coincidence that I began to feel the symptoms just a moment after that experience of extreme stress."

    Now that is EXACTLY how I came down sick. I know in my heart of hearts that the virus was in me, but it took a huge dip in my immune system , brought on by the stress of finding my husband cheating on me and leaving me for another woman. I have been sick ever since. I was not sick before that.

    However, I do remember 4 years ealier, having a really bad case of bronchitis that almost went into pneumonia, and that took my energy levels down for a long time. I think that has a link to what happened when that huge stressor came.
  9. onedaymagpie

    onedaymagpie New Member

    That it effects 90 percent women explains the entire history of the reaction to this DD, including the decades of time that the medical community insisted that it simply is not a diease, giving it the name "yuppie flu" and then "CFS", failing for decades to provide funds to do research for a cause or a cure, and the continued battle for it to be accepted, including for disability qualification. Do you really think that if it were 90 percent men, it would have been treated like this? No way. Although it is getting better, most funds are directed to health problems for men and studies focus more on men. Studies also show that when a man compared to a woman goes to the doctor with the same complaint, the man will be taken more seriously, more tests done, etc. and the woman's complaints are more likely to be dismissed as over-reacting.

    That said, and while it is way overstated to the point of being ridicuous in this article, I do believe the mind is very powerful and focusing thoughts on being and feeling healthy is important.
    [This Message was Edited on 08/01/2005]
  10. Mikie

    Mikie Moderator

    Between stress and all illnesses. Many suffer cancer or heart attacks following particularly stressful periods in their lives.

    Yes, an optimistic outlook is beneficial for everyone who is trying to heal or stay well.

    The point is that psychological factors are hardly ever mentioned when articles about other illnesses are published. They are often mentioned when speaking of our illnesses.

    Heck, I've talked often here of the value of a positive attitude and the use of therapy. Still, I resent the "learned helplessness" being applied to us. This is a known outcome of those who have had heart attacks. In fact many have to overcome this feeling of fragility following heart surgery in order to heal.

    It is not uncommon at all for those who suffer from cancer to fall into hopelessness as they realize that their bodies have been harboring sick tumors. They may worry constantly about a recurrance. Therapy would be a big help in this instance too but it is seldom mentioned.

    There is just too much emphasis on the psychological problems our illnesses bring with them. Because there is no known cause nor no known cure, it is way too easy to blame things on our attitudes, our psychological health, or whether or not we were overachievers. Cancer patients and those with heart attacks are often overachievers and perfectionists. No one is pointing this out.

    Love, Mikie
  11. Methos

    Methos New Member

    It looks like this poorly-researched article won't die. I just happened to see a link on today, 8/7/05.

    It would be nice if the author would join the rest of us in the 21st century.
  12. jami117

    jami117 New Member

    I sent MSN feedback on the article. I asked them to feature the letters that had been written by professionals to Psychology Today in response to publication of this article.
  13. BxGirl

    BxGirl New Member

    What about me, who has fibro and hasn't stopped doing any of my activites, despite my pain, brain-fog, IBS, colitis, sleep disorder, etc. etc.

    I haven't given up and I don't have "learned helplessness". What a crock!!!!

  14. elsa

    elsa New Member

    It really won't go away will it ?! I got on my soap box with empower's posting of this article. It truly
    angers me. It's theory falls way short in explaining why I have FM/CFS ... no abuse or trauma. Ummm...

  15. BxGirl

    BxGirl New Member

    I just sent Psychology Today a letter telling them what i thought about their article.

  16. Rose_Red

    Rose_Red New Member

    Guys, come on.

    We have to remember that it was published in Psych Today. Of course they're going to focus on the mental aspects of this illness. We all know that severe stress - car wrecks, accidents, illnesses or a traumatic experience (for me it was my godfather dying from cancer after 2 years of being his primary caregiver). I think the whole 'we almost hit a deer so I got food poisoning' is reeeaaalllllllyyyyyyyyyyy stretching it thin.

    'Learned helplessness' is not a crock. Personally I don't really like the phrase or the connotations. How many people here can honestly say that they have NEVER not done something because they knew they would have to suffer for it?

    Simple example, I went with friends to a beautiful state park in North Jersey. It had a waterfall with a beautiful mountain pool at the bottom. Mountain water is COLD! i sat on the rocks and put my feet in. I didn't go swimming with my friends because I KNEW I would be in agony from the muscle cramps and spasms if I jumped into that freezing water. As it was I had charlie horses and cramps in my calves for 3 days just from hanging my feet in. How many of us put off painting the living room because you know that

    Cognitive Behavior Therapy has been proven to work for a mutitude of things. 'attitude is everything'

    I think it's an extremely dumbed down article but I didn't read anywhere that's it's all in your head. It says that stress makes it worse. I can see your points - I really can. My point here (in agreement with you guys) is that if the article is not read caefully that there will be lots of un/mis-informed people who think they know what it said.

    Quote "some doctors and researchers dismissed them in the past as hysteria or the "yuppie flu." It does say in the past. Most of us were/are Type A personalities. I haven't actually hear the term 'yuppie flu' in about a decade.

    We are so sensitive and jumpy because we've all had to deal with people that don't believe we're sick that it doesn't take much to set us off.

    I do think the article was researched text book style and is kindergardenish in it's quotes of FMers. The author could've done a much more thorough job.

    please don't rip my head off.

  17. jana15

    jana15 New Member

    I'm anew comer to this site and am finding it a real eye opener and comforter so thankyou.

    I am down this week after having endured a Colonscopy/Endoscopy last Wednesday and a Cone Biopsy on Friday. Yes I knew these procedures would put me in bed with a flare-up and just have to put up with it knowing it will pass.

    What I find frustrating about this article and similar attitudes is the convenient over sight of all the tangible physical abnormalities many of us have. I have suffered from CFS/FM for six years now and in some ways am learning to manage it but even when I am feeling relatively better I still have a very low Ferretin count. At the last test two months ago, it was 7 and should be between 30 and 300. Also my white blood cell count shows mild to moderate Neutropenia which means either my body is still fighting an infection or for some reason it has stopped producing white blood cells and as for the Ferretin count - according to my Gastrointerologist, the only reason that can go down is if I am bleeding from somewhere.

    These are tangible markers of an underlying illness and just because the Medical Profession can't identify it or find the cause, doesn't mean it doesn't exist or can be justified away as something else. I for one am not prepared to allow the medical profession off the hook so easily and will continue to badger them until they can explain the reason for these two abnormalities, even if that means more research work on their part. I for one know I am not sick as a result of 'overachieving' or because I am afraid of becoming well again!

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