ABC News clip on /FM if your interested

Discussion in 'Fibromyalgia Main Forum' started by danisue22, Mar 8, 2003.

  1. danisue22

    danisue22 New Member

    I went to ABC News (Edited to remove URL) and looked at the transcript. It is very interesting. I was going to post the whole thing here but it's 9 pages long and I did'nt think my hands would make it. But if you'd like to see it or print it out for yourself you can go to and then type in abc newsFibromyalgia/behind the pain.I could'nt believe all that they had to say about it. I was so glad I went and read the transcript.Hope this helps you get to it if you like. God Bless Danisue
  2. catgal

    catgal New Member

    I'm too tired tonite, but I wrote down the tag, and tomorrow when I have more energy I will definitely read and print it out. So glad to see that gradually FM is getting some legitimate press.

    Really appreciate you bringing this to our attention. Blessings, Carol...
  3. MelanieThebirdlover

    MelanieThebirdlover New Member

    Hi, thanks for sharing the info. I went to but I cant locate the article. what am I doing wrong? If you can help, please instruct me. thank you in advance.

  4. Shirl

    Shirl New Member

    Validating Fibromyalgia: Behind the Pain
    Research May Make Diagnosis Easier

    UPDATED: 5:05 p.m. EST February 6, 2003

    ANN ARBOR, Mich. -- According to the Mayo Clinic, 6 million to 8 million Americans have fibromyalgia. It is described as constant pain in every part of the body and fatigue that leaves many unable to get out of bed.

    There is no proven treatment and with no easy test to diagnose it, many doctors don't even discuss it. Now, ongoing research finally gives answers where there have been none.

    Fibromyalgia has plagued Shari Ferbert.

    "I have burning in various parts of my skin, like Indian burns, and throbbing, and sometimes it's shooting pain," she said.

    Ferbert said the response she gets from doctors is often worse than the pain.

    "They just don't understand it. They don't understand the symptoms of it," she said.

    "In many cases, people will see an average of six to eight physicians before they are ultimately diagnosed with fibromyalgia," rheumatologist Daniel Clauw said.

    According to Clauw, of the University of Michigan Health System in Ann Arbor, diagnosis may not be such an ordeal anymore.

    "This study has helped establish that when people with fibromyalgia say they're experiencing pain, they in fact are experiencing pain," he said.

    In a study he led, Clauw looked at blood flow in the brains of people with fibromyalgia and a healthy control group.

    "When we gave the fibromyalgia patients a low pressure stimulus, they had a high rating of pain. But in the controls, it was barely detectable," he said.

    When the stimulus doubled in the healthy group, pain showed up the same as it did in the fibromyalgia patients under low stimulus. What does that mean?

    "If you will, fibromyalgia patients have the volume control turned up too loud on their pain processing areas of their brain," Clauw said.

    That may not be the only problem. Nurse researcher Joan Shaver, of the University of Illinois at Chicago, said fibromyalgia patients may also have low levels of growth hormone. Growth hormone is important to muscle health and not having muscle pain. It is also related to quality sleep -- a major problem for people with fibromyalgia.

    In healthy people, the hormone peaks with early sleep. In people with fibromyalgia, it stays low, which may be to blame for disruptive sleep. From there, it's a snowball effect.

    "We do know that major sleep disruption leads to fatigue and pain," Shaver said.

    For Ferbert, this research is a step in the right direction. With her nonprofit group Advocates for Fibromyalgia Funding, Treatment, Education and Research and their first $10,000 grant, she intends to keep it moving forward.

    "People can try all the antidotes and all these different trial and error type things they want, but the answer's in the research," she said.

    At this time, Shaver said growth hormone supplements probably won't help because they are much higher doses than the body produces.

    If you would like more information, please contact:
    Joan Shaver, Ph.D., R.N.
    University of Illinois at Chicago
    PART: '2'

    Fibromyalgia More Than Growing Pains
    Many Doctors Don't Check For Condition In Children

    UPDATED: 5:06 p.m. EST February 6, 2003

    TORRANCE, Calif. -- One description of fibromyalgia from a small boy was that the condition makes you feel as if every muscle in your body is about to throw up.

    It causes chronic fatigue and muscle and joint pain. Doctors say it's hard to diagnose and it has long been considered an adult problem. Now, doctors say those childhood "growing pains" may be the start of it all.

    It's not easy being a kid when every muscle in your body aches as you struggle to keep up with your kid brother. Alyson Weinberg said it's even harder when nobody believes you.

    "We went to the doctor and they [told my parents], 'There's nothing wrong with your child.' It made me feel like nobody trusted me," Alyson said.

    Alyson was just 2 years old when she first complained that her body hurt. Year after year, the determined athlete would play through a barrage of mysterious symptoms: an itchy back, earaches, headaches, pain in her neck, stomach, legs and feet. Lab tests were negative. Doctors were suspicious.

    "[The doctor asked,] 'What's going on at school?' -- with this attitude like he knew my kid better than I did. I said, you can't tell me this is psychosomatic. I don't buy that," Alyson's mother, Lisa, said.

    If she had, Lisa never would have found endocrinologist R. Paul St. Amand, the man who put a name to Alyson's pain.

    Fibromyalgia does not show up on X-rays or blood tests. St. Amand finds it by feeling for swelling in specific muscles, tendons, ligaments and joints. The trouble is, most doctors don't look for it in children.

    "[Doctors] treat the individual thing. Give them a little Tylenol, give them a little of this and that, but it's patchwork stuff because nobody puts it together," St. Amand said.

    He said growing pains, chronic fatigue syndrome, and some cases of attention deficit/hyperactivity disorder may actually be fibromyalgia. He believes it's a genetic defect in the kidneys that we pass on to our children.

    Lisa's had fibromyalgia 40 years. Both of her children have it, too.

    "It just brought closure to all the symptoms we've ever had problems with and there was no answer. It made sense finally," she said.

    Now, thanks to an old drug, there's hope. St. Amand said guaifenesin, a common over-the-counter expectorant in cold medicine, is clearing symptoms in 90 percent of his patients with no side effects.

    The "pain" spots on Alyson's body are even melting away, and she can feel it. The kid who struggled to keep up is back on the mat hoping to earn a spot on the junior Olympic judo team.

    "I don't want to quit. If I see a goal, I want to go out and do it and not be held back by something I can't control," Alyson said.

    Her pain is now less frequent and less severe. There's still no cure for it, but for this well-rounded 12-year-old, it's enough knowing there's a name for it.

    "I felt better and relieved that this was something instead of just my imagination," she said.

    St. Amand said irritable bowel syndrome, fatigue, leg and neck pain and headaches are often early signs of fibromyalgia in children. He advises parents to keep detailed records of children's symptoms and find a doctor who knows the disease.

    If you would like more information, please contact:
    Claudia Marek
    4560 Admiralty Way #355
    Marina del Ray, CA 90292

    [This Message was Edited on 03/08/2003]
  5. Shirl

    Shirl New Member

    Shalom, Shirl
  6. SusanNH

    SusanNH New Member

    Hi Danisure22,

    Thank you so much for the information about the fibro post on ABC. I went in search of it and was unable to locate it. If you could share with me on what date or in the vicinity it was, perhaps it would help me find it.

    Thank you
  7. SusanNH

    SusanNH New Member

    Hi Danisue22,

    Sorry about the typo in your name. My hands don't always work the way I would like them too. Hopefully you will be able to tell me how to find the ABC post about fibro.

  8. danisue22

    danisue22 New Member

    this is just a bump so hurtsalot does'nt miss it. Thanks Danisue