A FM article from Health Section, L. A. Times

Discussion in 'Fibromyalgia Main Forum' started by sunflowergirl, Aug 23, 2005.

  1. sunflowergirl

    sunflowergirl Well-Known Member

    August 22, 2005 latimes.com :
    Exploring fibromyalgia's mysteries, researchers look to the central nervous system, gaining deeper insight into why we suffer.


    By Shari Roan, Times Staff Writer


    FOR years, pain, stiffness and fatigue clung to Lauren Armistead like an invisible shroud. It was tough enough to live with fibromyalgia — but the skepticism she encountered when she discussed her condition was intolerable.

    "Throw out a word like fibromyalgia and you'll get this blank stare," the 28-year-old said recently, sitting in her Santa Monica apartment. "For so long, it was my own private battle."

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    Today, however, Armistead is slowly, tentatively opening up about a disease that is simultaneously emerging from its own mysterious black box.

    A groundswell of research has begun to expose the underpinnings of the baffling disorder that affects an estimated 6 million to 10 million Americans, most of them women. Not only do the findings have the potential to ease the condition's stigma, they also may provide clues to other illnesses for which there is no clear clause.

    Fibromyalgia, experts now believe, is a pain-processing disorder — arising in the brain and spinal cord — that disrupts the ways the body perceives and communicates pain.

    "There was a time when it was thought to be psychosomatic," said Dr. Robert Bennett, a fibromyalgia expert at Oregon Health & Science University in Portland. "We now understand the pain in fibromyalgia is an abnormality in the central nervous system in which pain sensations are amplified."

    Now doctors are more likely to acknowledge fibromyalgia as a real illness. Because patients are being diagnosed and referred to specialists more quickly, they're finding relief, and acceptance, easier to come by.

    Pharmaceutical companies have jumped on the new theory of the disorder too. The first prescription drug approved specifically for fibromyalgia will likely be approved late next year or early in 2007, and at least half a dozen pharmaceutical companies are developing other treatments. Meanwhile, the federal government is funding 10 studies of the disease.

    "It's very rewarding," said Dr. Stuart Silverman, medical director of Cedars-Sinai Medical Center's Fibromyalgia Rehab Program. "I was seeing patients before because no one else wanted to see them. Patients would tell me, 'Everyone has told me there is nothing I can do.' "

    *

    The difficulty of diagnosis

    Fibromyalgia typically is defined as unremitting pain in multiple areas of the body — at least 11 of 18 specific tender points — accompanied by fatigue, difficulties with concentration and other vague physical discomforts. The illness is called a syndrome because the cluster of symptoms lacks the clear markers of disease, such as changes in the blood or organ function.

    Because patients often look healthy, doctors have sometimes diagnosed fibromyalgia as a muscle problem or an autoimmune disorder. It can also be a "wastebasket" diagnosis, attached to people with inexplicable pain problems. Some have even dismissed it as the complaints of emotionally troubled women.

    Many fibromyalgia patients stumble around for years seeking help for their symptoms — even after receiving a diagnosis. Always athletic, Armistead first experienced back pain when she was a child, but she assumed the discomfort was a part of playing sports.

    By the time she had joined the UCLA volleyball team in the mid-'90s, however, Armistead knew something was seriously wrong. After games, she would be racked with pain. She sometimes took as many as 15 over-the-counter pain pills a day.

    Coaches and trainers, alarmed at her use of painkillers, insisted she undergo medical tests. Over a year, Armistead saw numerous doctors but got no answers.

    "Eventually everyone started doubting whether or not I was really in pain," she said. "My coach couldn't understand how I could play one day and be bedridden the next."

    Debilitated by pain and fatigue, Armistead quit the team and began to cut back on classes. She lost 35 pounds in eight months. It was a time in her life "so painful, I've tuned a lot of it out."

    In 1996, however, a doctor diagnosed her problem as ankylosing spondylitis, a type of arthritis affecting the spine, and fibromyalgia.

    Today Armistead takes an arthritis medication, two sleep medications, vitamins and herbs. She undergoes acupuncture, exercises moderately and works only a few hours each day doing freelance marketing.

    "With each passing year I've accepted the cards I've been dealt," she said. "I'm not giving up. I keep trying new treatments."

    *

    The evolution of treatment

    Armistead, like many fibromyalgia patients, is a long way from being pain-free. But the new research on fibromyalgia's causes offers a blueprint for more effective treatments.

    For years doctors had been looking for a cause of fibromyalgia at the site of the pain: the head, back, hands, neck, gut or elsewhere. And their treatments focused on soothing pain in these locations. As their understanding has grown, however, these treatments have begun to change and new ones are in development.

    Fibromyalgia is now thought to arise from miscommunication among nerve impulses in the central nervous system, in other words the brain and spinal cord. This "central sensitization" theory is described in detail this month in a supplement of the Journal of Rheumatology. The neurons, which send messages to the brain, become excitable, exaggerating the pain sensation, researchers have found.

    As a result, fibromyalgia patients feel intense pain when they should feel only mild fatigue or discomfort — such as after hauling bags of groceries. They sometimes feel pain even when there is no cause.

    "The pain of fibromyalgia is not occurring because of some injury or inflammation of the muscles or joints," said Dr. Daniel Clauw, a fibromyalgia researcher and director of the Center for the Advancement of Clinical Research at the University of Michigan. "There is something wrong with the way the central nervous system is processing pain from the peripheral tissues. It's over-amplifying the pain."

    Recent studies show multiple triggers for the amped-up response to pain. Fibromyalgia patients have, for instance, elevated levels of substance P, a neurotransmitter found in the spinal cord that is involved in communicating pain signals.

    They also appear to have lower levels of substances that diminish the pain sensation, such as the brain chemicals serotonin, norepinephrine and dopamine. Growth hormone, which helps promote bone and muscle repair, is also found in lower levels in fibromyalgia patients.

    New therapies are aimed at these abnormalities. The experimental drug pregabalin, for example, can reduce the release of brain chemicals involved in the pain response. Other medications might encourage the deep, restorative sleep during which the body secretes growth hormone to nourish tissues.

    Although antidepressants that increase just serotonin have been a disappointment in treating fibromyalgia, a new class of drugs may provide better pain relief by boosting both serotonin and norepinephrine. The pain and depression of fibromyalgia are caused by abnormal levels of these neurotransmitters, doctors now believe, not simply by the inability to live life normally.

    "What we have realized is there is a very strong relationship between depression and pain physiologically," Bennett said.

    Medications approved specifically for fibromyalgia will dramatically change treatment, Silverman predicts.

    "Fibromyalgia will get a lot more respect," he said. "People will think there must be a disease if there is a medicine for it. It must be treatable."

    *

    A multifaceted model

    The "central sensitization" model of fibromyalgia may even be used to help explain and treat other chronic pain conditions that have stumped doctors, such as irritable bowel syndrome, chronic low back pain, interstitial cystitis and vulvodynia, Clauw said. All may be variations of central sensitization and the resulting imbalance of chemicals and hormones.

    Although fibromyalgia is thought to affect mostly women, he believes many men are afflicted but are instead diagnosed with chronic low back pain.

    "These enigmatic chronic conditions are all probably central pain syndromes," he said. "People were taught that there is one kind of pain, a pain that occurs in the area of the body where people are experiencing pain. But this notion of central pain, that's where we really need to move."

    Others aren't so sure, however. Many questions about central pain disorders remain, including why some people are afflicted and not others; why symptoms can vary so widely among patients; and whether the emerging chemical markers — high levels of substance P and low levels of serotonin and norepinephrine — cause the exaggerated pain or are its result.

    The central sensitization theory hasn't convinced everyone that fibromyalgia is a real illness, said Dr. Nortin M. Hadler, a professor of medicine, microbiology and immunology at the University of North Carolina.

    It's possible that fibromyalgia patients simply have a different mind-set, he said. They tend to catastrophize small burdens, exaggerate minor discomforts and quickly lose hope. This psychic despair, he said, can alter neurotransmitters and influence other central nervous system functions.

    "Is central sensitization something we want to label as a pathological process or is this something we are all capable of doing if we prepare ourselves intellectually?" he said.

    Hadler is the author of the 2004 book "The Last Well Person," in which he said that too many normal human characteristics and conditions are "medicalized" into problems that require treatment.

    Once fibromyalgia patients are treated as if they have a disease, he said, "they never return to wellness."

    *

    A hard disorder to treat

    This perception of fibromyalgia, while falling out of favor among many doctors, nevertheless strikes a nerve in patients and among doctors specializing in its treatment.

    Fibromyalgia patients are difficult to treat, Bennett said, requiring much time and attention. Some patients never get better, although about 80% improve with a dedicated treatment plan and lifestyle modifications, he said.

    "There is no recipe for treating fibromyalgia patients. The treatments have to be fully individualized, and that takes a lot of time," Bennett said. "Most patients aren't getting the treatment they need."

    Armistead, however, has reached a turning point. Now she sits down with loved ones and friends and explains to them, one on one, what her illness is like, how she must be flexible when making plans, that she may not feel well even though she looks fine.

    "The name 'fibromyalgia' is recognized now," she said. "I think someday people will be shocked that anyone thought it was all in your head."

    On a recent day, as the clock approached 6 p.m., Armistead pushed herself through a 90-minute yoga class at a sunny Westside studio. She slowly picked up her mat, towel and water and left the studio looking tired and moving gingerly. Her back throbbed. Her neck hurt. A headache was coming on.

    But she did it. She made herself do the stretching exercises her doctor said are necessary. She enjoys the small satisfaction of knowing that she did her best.

    "Living with any chronic illness is not easy," she said. "It's a constant battle. My saving grace is I know there will be a day when I'll wake up pain-free."

    *

    (BEGIN TEXT OF INFOBOX)New options for treatment

    As understanding of fibromyalgia has grown, so too have options for treating the condition. These medications are under study:

    • Pregabalin (brand name Lyrica): This antiepileptic drug, also approved for diabetic nerve pain, appears to be effective in reducing pain and disturbed sleep in fibromyalgia patients. If late-stage trials prove successful, Pfizer plans to ask the FDA to approve the drug for fibromyalgia.

    • Milnacipran: Marketed outside the United States as an antidepressant, this drug increases the brain chemicals norepinephrine and serotonin. Early studies showed it to be successful in reducing fibromyalgia pain, and data from the first phase-three trial is due out this fall. Cypress Bioscience and Forest Laboratories hope to seek FDA approval late next year.

    • Duloxetine (brand name Cymbalta): This antidepressant, already on the market, increases the activity of serotonin and norepinephrine. It was successful in reducing fibromyalgia pain in early-phase studies, and plans for a phase-three study are underway. If successful, Lilly may seek FDA approval of the medication for fibromyalgia.

    • Xyrem: Approved for narcolepsy with the complication of weak or paralyzed muscles, the drug might be able to increase deep sleep in people with fibromyalgia. The results of an initial study on fibromyalgia are due later this year. It's made by Jazz Pharmaceuticals.

    • Provigil: Approved for daytime sleepiness associated with narcolepsy and shift-work disorders, or sleep problems in those who work nights or on changing schedules, the medication might help treat fatigue related to fibromyalgia. The manufacturer, Cephalon Inc., has no plans to seek approval for the drug for this purpose, but it can be used off-label.

    • Mirapex: Approved for Parkinson's disease, this drug works by increasing the neurotransmitter dopamine. The manufacturer, Boehringer Ingelheim, has no plans to study the drug for use in fibromyalgia, but it can be used off-label. An independent study showed it was promising for reducing fibromyalgia pain.

    --

    Fibromyalgia's link to other disorders

    The recent fibromyalgia research might also lead to a greater understanding of several other disorders. The suspected cause of the condition — central sensitization, in which nerve impulses in the central nervous system malfunction — may also play a role in:

    • Irritable bowel syndrome

    • Chronic fatigue syndrome

    • Gulf War syndrome

    • Interstitial cystitis

    • Vulvodynia

    • Chronic low back pain

    • Chronic headaches

    • Endometriosis


  2. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    And the L.A. Times, yippee!

    While I'll be dubious about any new meds that come out for FM (just because they are new) and i won't be in a hurry to try them myself, this quote from your article is very true:

    QUOTE
    "Medications approved specifically for fibromyalgia will dramatically change treatment, Silverman predicts.

    "Fibromyalgia will get a lot more respect," he said. "People will think there must be a disease if there is a medicine for it. It must be treatable." ENDQUOTE

    That's as far as I got for nw, fogging, and posting my own monster ME/CFS article today too, which I still haven't had enough energy to read all of too.

    Pacing, pacing, it's all about pacing.



    Jeanne
  3. sunflowergirl

    sunflowergirl Well-Known Member

    bumping for more to read. This is great that it's in the L. A. Times
  4. moxiepup

    moxiepup New Member

    Thank You for posting this article, for once someone isn't slamming the DD's and us YEAH!!

    I think the more people hear the name even if they don't know what it is it will give it some legitamacy.

    take care,

    gail
  5. Megumi

    Megumi New Member

    Good article, thank you for posting it.

    But, who is Dr. Hadler? I really got erked when I read what he says about FM patients;

    "They tend to catastrophize small burdens, exaggerate minor discomforts."
    "Once FM patients are treated as if they have a disease they never return to wellness."

    He obviously has never LIVED with a FM patient!!!!

    I don't know about the rest of you but I have a hard time catasprophizing BIG burdens...I flat don't have the mental or physical energy!!!!!

    He should be rung out to dry!
  6. jaltair

    jaltair New Member

    I just posted the same article (before I saw that you had posted one!) Oh well, great news, yes!!

    My husband was very disturbed by Dr. Nortin M. Hadler's comments were in the article, as he knows what I am (type A) and what I've been through. Dr. Hadler stated:

    "It's possible that fibromyalgia patients simply have a different mind-set, he said. They tend to catastrophize small burdens, exaggerate minor discomforts and quickly lose hope. This psychic despair, he said, can alter neurotransmitters and influence other central nervous system functions.

    "Is central sensitization something we want to label as a pathological process or is this something we are all capable of doing if we prepare ourselves intellectually?" he said.

    Hadler is the author of the 2004 book "The Last Well Person," in which he said that too many normal human characteristics and conditions are "medicalized" into problems that require treatment.

    Once fibromyalgia patients are treated as if they have a disease, he said, 'they never return to wellness.' "

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    We should write to this doctor and set him straight!
  7. sunflowergirl

    sunflowergirl Well-Known Member

    Perhaps we all need to get on a letter writing campaign and bombard him.

    I hesitated on sending this article to my son who still is of the opinion that if I take antidepressants everything will be fine. I don't do good on meds. that make me feel weird. I can take a glass of wine and feel better without stronger drugs.

    This is really big stuff....getting on the front page of the L.A. Times Health section. The health section is a once a week separate section for those interested.

    I did a little research on Dr. Hadler on the internet. There's lots on him and basically he's saying that we don't need to see a dr. for backaches, knee pain, etc. etc. No need to have those bone density, prostate tests, etc. He also has a book out now.........No, we will not even read one paragraph.
    [This Message was Edited on 08/23/2005]
  8. lbconstable

    lbconstable New Member

    Jeanne, Love that idea!!!

    My husband's friend read this article and unfortunately what he took away with it is that FM is pschosomatic. UGH!!!!

    Thankfully my hubby set him straight! Glad I wasn't there. Thankful to know that my husband finally gets it and will go to bat for me.

    Hugs to all, Laurie
  9. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    this article is clearly on our side, and very sensitively written. It tells the compelling story of a woman suffering. A past proficient athlete who most wouldn't view as a slacker, or someone who would suddenly want to think herself sick.

    Any good reporter (and we have to suppose anyone at prestigious LA Times is indeed good), has to give at least some account of the opposing opinions. She chose one ignoramous, and picked some of his worst quotes, and made him sound like a jerk. And there you have the opposer, rightfully hung by his own words.


    jeanne


    {I like my idea too! NOt sure if I have some EBV handy though. Anyone wanna share? Worthy cause.}



    Jeanne
  10. sunflowergirl

    sunflowergirl Well-Known Member

    bumping for more to read this article
  11. Beanski

    Beanski New Member

    "The central sensitization theory hasn't convinced everyone that fibromyalgia is a real illness, said Dr. Nortin M. Hadler, a professor of medicine, microbiology and immunology at the University of North Carolina.

    It's possible that fibromyalgia patients simply have a different mind-set, he said. They tend to catastrophize small burdens, exaggerate minor discomforts and quickly lose hope. This psychic despair, he said, can alter neurotransmitters and influence other central nervous system functions."

    Go to Google and search for

    "rheuma21st could it be in your mind"

    and read his stupid opinions. Then, when you're thoroughly disgusted, at the bottom click on the links to read Bennett's and particularly Wolfe's reply in which Hadler gets a boot to the head.
  12. Mikie

    Mikie Moderator

    Excellent article with the exception of the idiocy of this Dr. Handler. Where does he get his info? Most of us do not catastrophize the smallest things. Most of us have used denial to tell ourselves all is well so we could push on through the pain to try to lead normal lives. He is just trying to sell a book. It's bad Karma to trivialize others' sufferings.

    Acceptance of our illnesses is slow to come by but things are getting better. Thank God for the docs who have believed us and stood by us. Somethimes they get treated worse by the medical establishment than we do. We owe them a lot.

    Love, Mikie
  13. justjanelle

    justjanelle New Member

    He says that once we get a diagnosis we think we have a real medical condition and therefore we never return to health.

    I don't know about you, but I personally am doing much better now that I have a diagnosis, some appropriate treatment (including meds and very mild exercise) and have learned to recognize my limitations within this condition.

    During the years before diagnosis, when the doctors all swore I was healthy and I kept getting sicker and sicker and couldn't make them understand -- What chance did I have of returning to health under those conditions? I was actually bedridden by the time I was diagnosed.

    Without diagnosis and treatment, was I just going to wake up well one morning? I don't think so.

    What an ignoramus!

    Best wishes,
    Janelle

    PS. I was just thinking about other conditions in which people get a diagnosis and then never return to health. How about Multiple Sclerosis, Parkinsons, Lou Gherig's Disease, etc. Same story there. But maybe they're not real either?


    [This Message was Edited on 08/24/2005]
    [This Message was Edited on 08/24/2005]
  14. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I guess Ebola must be really fake.

    Those bloody fakers.



    Jeanne
  15. sunflowergirl

    sunflowergirl Well-Known Member

    and found the article from the Rheumatism magazine and the replys.

  16. JLH

    JLH New Member

    Thanks for sharing with us. Good article!