Re: Fibromyalgia: Cure for a baffling disorder?

[Guest guest]

a, thanks for this wonderful article. I hope and pray that there

is a cure for this awful disease. I would tend to take issue with

the " old school " view of us being hypersensitive, etc. I was a size

8, running 4 miles a day, playing softball & volleyball, not to

mention having 4 kids, when I started having these baffling symptoms.

If those who don't believe in FMS could spend a week in our bodies,

they might have a little different perspective on things. However, I

wouldn't wish a week of a FM flare on any one...you give us weapons

in our battle against these disorders, and we all appreciate your

time and dedication.

Hugs from

Jane

> Fibromyalgia: Cure for a baffling disorder?

>

> The Los Angeles Times

>

> Monday, August 29, 2005

>

> For years, pain, stiffness and fatigue clung to 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 ,

Calif.,

> apartment. " For so long, it was my own private battle. "

>

> 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, which affects an estimated 6 million to 10

> million Americans, most of them women. The findings not only have

the

> potential to ease the condition's stigma but also may provide

clues

> to other illnesses for which there is no clear clause.

>

> Fibromyalgia, experts now believe, is a pain-processing disorder

that

> arises in the brain and spinal cord and disrupts the ways the body

> perceives and communicates pain.

>

> " There was a time when it was thought to be psychosomatic, " said

Dr.

> , 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 probably will be approved late next year or early in

> 2007, and at least a half-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 in Los

> Angeles. " 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.' "

>

> Fibromyalgia typically is defined as unremitting pain in at least

11

> of 18 specific tender points in the body, 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 sometimes have

diagnosed

> fibromyalgia as a muscle problem or an autoimmune disorder. It

also

> can be a " wastebasket " diagnosis, attached to people with

> inexplicable pain problems. Some have even dismissed it as the

> complaints of emotionally troubled women.

>

> Years seeking help

>

> Many fibromyalgia patients spend 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.

>

> However, by the time Armistead had joined the UCLA volleyball team

in

> the mid-'90s, she 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

> that she undergo medical tests. Armistead saw numerous doctors

during

> a yearlong span 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. "

>

> Hormone 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.

>

> 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. 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.

>

> Medications approved specifically for fibromyalgia will change

> treatment dramatically, 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. "

>

> 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.

>

> Doctors have doubts

>

> 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.

>

> 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, requiring much time

and

> attention, said. Some patients never get better, although

> about 80 percent 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, " said. " Most patients aren't getting the treatment

they

> need. "

>

>

>

http://www.palmbeachpost.com/accent/content/accent/epaper/2005/08/29/

> a1d_fibro_lat_0829.html

>

>

>

>

[Guest guest]

a, thanks for this wonderful article. I hope and pray that there

is a cure for this awful disease. I would tend to take issue with

the " old school " view of us being hypersensitive, etc. I was a size

8, running 4 miles a day, playing softball & volleyball, not to

mention having 4 kids, when I started having these baffling symptoms.

If those who don't believe in FMS could spend a week in our bodies,

they might have a little different perspective on things. However, I

wouldn't wish a week of a FM flare on any one...you give us weapons

in our battle against these disorders, and we all appreciate your

time and dedication.

Hugs from

Jane

> Fibromyalgia: Cure for a baffling disorder?

>

> The Los Angeles Times

>

> Monday, August 29, 2005

>

> For years, pain, stiffness and fatigue clung to 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 ,

Calif.,

> apartment. " For so long, it was my own private battle. "

>

> 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, which affects an estimated 6 million to 10

> million Americans, most of them women. The findings not only have

the

> potential to ease the condition's stigma but also may provide

clues

> to other illnesses for which there is no clear clause.

>

> Fibromyalgia, experts now believe, is a pain-processing disorder

that

> arises in the brain and spinal cord and disrupts the ways the body

> perceives and communicates pain.

>

> " There was a time when it was thought to be psychosomatic, " said

Dr.

> , 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 probably will be approved late next year or early in

> 2007, and at least a half-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 in Los

> Angeles. " 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.' "

>

> Fibromyalgia typically is defined as unremitting pain in at least

11

> of 18 specific tender points in the body, 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 sometimes have

diagnosed

> fibromyalgia as a muscle problem or an autoimmune disorder. It

also

> can be a " wastebasket " diagnosis, attached to people with

> inexplicable pain problems. Some have even dismissed it as the

> complaints of emotionally troubled women.

>

> Years seeking help

>

> Many fibromyalgia patients spend 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.

>

> However, by the time Armistead had joined the UCLA volleyball team

in

> the mid-'90s, she 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

> that she undergo medical tests. Armistead saw numerous doctors

during

> a yearlong span 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. "

>

> Hormone 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.

>

> 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. 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.

>

> Medications approved specifically for fibromyalgia will change

> treatment dramatically, 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. "

>

> 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.

>

> Doctors have doubts

>

> 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.

>

> 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, requiring much time

and

> attention, said. Some patients never get better, although

> about 80 percent 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, " said. " Most patients aren't getting the treatment

they

> need. "

>

>

>

http://www.palmbeachpost.com/accent/content/accent/epaper/2005/08/29/

> a1d_fibro_lat_0829.html

>

>

>

>