Neurologic signs common with fibromyalgia
Tue, Sep 22 13:16 PM EDT
By Michelle Rizzo
NEW YORK (Reuters Health) - Fibromyalgia isn't all in your head, new research suggests.
In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other "neurologic" signs and symptoms.
Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It's a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real.
The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body of literature suggesting that the condition is real and also support the possibility that a "neuroanatomical" cause may underlie fibromyalgia.
Dr. Nathaniel F. Watson, of the University of Washington Medicine Sleep Institute at Harborview, Seattle, and colleagues studied 166 people with fibromyalgia and 66 pain-free controls.
All of them were examined by a neurologist who was unaware of their disease status. All study participants also completed a standard questionnaire on neurologic symptoms.
In 27 of 29 neurological categories tested, significantly more neurologic symptoms were seen in the fibromyalgia group than in the control group, Watson and colleagues found.
The greatest differences were found for light sensitivity, or "photophobia," seen in 70 percent of fibromyalgia patients but in only 6 percent of pain-free controls; poor balance, which plagued 63 percent of fibromyalgia patients but only 4 percent of controls; and weakness and tingling in the arms or legs, seen in more than half of fibromyalgia patients but in only around 4 percent of controls.
In addition, those with fibromyalgia had greater dysfunction than controls in certain nerves in the brain. They also had more "sensory" problems, motor abnormalities and gait problems.
Within the fibromyalgia group, there were significant correlations between several neurologic signs and symptoms. For example, numbness in any part of the body or tingling in the arms or legs correlated with neurologic test findings. Poor balance, poor coordination and weakness in the arms or legs also correlated with objective findings on neurologic tests.
These observations, Watson told Reuters Health, underscore the need for "careful neurological examinations in all fibromyalgia patients, particularly those with neurological complaints."
Watson cautioned that this study does not confirm a neuroanatomical basis for fibromyalgia and that much more work is necessary before this can be known with certainty.
SOURCE: Arthritis and Rheumatism, September 2009.
Tuesday, September 29, 2009
Wednesday, May 6, 2009
FDA approves a third drug to treat Fibromyalgia
FDA approves new drug Savella sooner than expected. Click on the link below for the press release. Ask your doctor if Savella can help treat your Fibromyalgia symptoms.
http://www.frx.com/news/PressRelease.aspx?ID=1278002
http://www.frx.com/news/PressRelease.aspx?ID=1278002
Sunday, April 19, 2009
Adverse reactions to glutamate
For the past two weeks, I've been in a horrendous flare-up of my symptoms. Starting with severe pain in my eyes and a feeling like someone had sprayed hot, burning chemicals in my eyes, going further to widespread "vague" neurological symptoms too numerous to list here, and finally culminating in the worst headache I've ever had which woke me from sleep at 5:30 a.m. Friday morning and had me considering whether to call an ambulance, it was that severe. The night before, I had stayed up quite late, having eaten my dinner at 10:00 pm. Dinner that night consisted of a phony BLT made with Morningstar Farms vegetarian breakfast strips (i.e., fake bacon).
One of the strangest symptoms was an incredible feeling of chills and shudders as I was trying to go to sleep late that night, and a horrible feeling of fear so bad that I had to leave the TV on in order to fall asleep. I was wearing a t-shirt, flannel sleep pants, a sweatshirt, socks and was under a sheet, blanket and TWO comforters. Nevertheless, I was absolutely freezing, despite the fact that the weather has turned and it was a seasonably warm night.
Now, a few days have passed, and I went into my freezer to read the label of the breakfast strips. To my horror, there were not only dozens of ingredients (that should have sent up a red flag) but a number of them are MSG imposters.
The more I started thinking about it, the more I realized that, due to my recent crazy schedule, I'd been consuming more processed foods, ready-made foods, all of which probably contain MSG or its affiliates.
A Google search provided the answers I needed. Chills and shuddering is a classic symptom of MSG or glutamate reaction. So are numbness, tingling, many other neurological problems. But, the most common reaction to MSG and its glutamate cousins? Severe migraine headache.
For those interested, here are some links. Read your labels. Know what you're eating. Don't buy this junk. And above all, if you buy it, don't eat it. I'm throwing my fakin' bacon in the trash.
http://www.truthinlabeling.org/adversereactions.htm
http://www.truthinlabeling.org/action.html
http://www.politicalfriendster.com/showConnection.php?id1=5427&id2=5439
One of the strangest symptoms was an incredible feeling of chills and shudders as I was trying to go to sleep late that night, and a horrible feeling of fear so bad that I had to leave the TV on in order to fall asleep. I was wearing a t-shirt, flannel sleep pants, a sweatshirt, socks and was under a sheet, blanket and TWO comforters. Nevertheless, I was absolutely freezing, despite the fact that the weather has turned and it was a seasonably warm night.
Now, a few days have passed, and I went into my freezer to read the label of the breakfast strips. To my horror, there were not only dozens of ingredients (that should have sent up a red flag) but a number of them are MSG imposters.
The more I started thinking about it, the more I realized that, due to my recent crazy schedule, I'd been consuming more processed foods, ready-made foods, all of which probably contain MSG or its affiliates.
A Google search provided the answers I needed. Chills and shuddering is a classic symptom of MSG or glutamate reaction. So are numbness, tingling, many other neurological problems. But, the most common reaction to MSG and its glutamate cousins? Severe migraine headache.
For those interested, here are some links. Read your labels. Know what you're eating. Don't buy this junk. And above all, if you buy it, don't eat it. I'm throwing my fakin' bacon in the trash.
http://www.truthinlabeling.org/adversereactions.htm
http://www.truthinlabeling.org/action.html
http://www.politicalfriendster.com/showConnection.php?id1=5427&id2=5439
Saturday, January 10, 2009
Vaso-vagal syncope, fainting, blackouts - contact STARS
NEWS RELEASE
BLACKOUTS AND SYNCOPE NON-PROFIT
LAUNCHED IN UNITED STATES
A million and a half Americans each year can now access
a new source of support and education.
South Carolina, Oct 2007- STARS an international non-profit organization has announced that it has established STARS-US, a national non-profit organization that is dedicated to supporting United States families and medical professionals to improve the diagnosis and care of Syncope conditions.
Affecting a million and a half Americans each year. Syncope is the medical term for a faint or blackout caused by a sudden lack of blood supply to the brain. Tragically, more that 40% of Americans with Syncope are either misdiagnosed or go undiagnosed. Syncope usually results from a heart rhythm or blood pressure regulation problem.
If you have Syncope, your life is turned upside down, you’re prohibited from driving, and you could fall unconscious at anytime, perhaps even losing bladder control. The embarrassment and the anxiety can ruin lives yet, if diagnosed correctly, most patients can be simply and effectively treated.
Since founding STARS in the UK in 1993, Trudie Lobban has seen a tremendous growth in the demand for information from US syncope sufferers. “We really had no choice but to set up an operation in the United States. Syncope can be extremely difficult to diagnose leaving sufferers, parents and doctors in a terrifying limbo-not knowing what’s wrong, and living in constant fear of another attack, let alone the consequence. I started STARS because it began to affect my daughter, Francesca, when she was very young. I felt as though Francesca was on the verge of death every time it happened. No-one could explain what was going on, or recommend a treatment. Today we receive 8,000 requests from people in just that position every month. Such a large proportion of these come from the US, we are delighted that we’re now able to open a dedicated organization, focused just on the ever-increasing needs of US families and doctors facing the specter of unexplained blackouts.”
FACTS on Syncope in the United States:
· Syncope affects 1.5 million American patients for the first time each year.
· It accounts for 10 billion dollars in doctor and hospital expenses each year.
· Yet up to 50% of patients leave the hospital without a clear diagnosis
· 10% of falls by the elderly are due to Syncope.
Syncope is often dismissed as simple fainting, but for a significant number of patients, the blackout is anything but simple. Complex Syncope (Reflex Anoxic Syncope or severe Vasovagal Syncope) often appear just like a “seizure” or “fit”, this leaves many patients with a tragically incorrect diagnosis of epilepsy. It is very important to make sure that syncope and epilepsy are distinguished from each other; this is a vital component of STARS’ educational effort around the world.
What is Reflex Syncope or RAS (Reflex Anoxic Seizures)?
RAS occurs mainly in young children. Any unexpected stimulus, such as pain, shock, or a fright, causes the heart and breathing to stop, the eyes to roll up into the head, complexion to become deathly white, the body to stiffen and the arms and legs to jerk. After 30 seconds the body relaxes and the heart starts beating. RAS attacks may occur several times per day/week/month. The attacks appear to come in batches. There is no cure, but advances have been made with the use of a pacemaker where cardiac pacing, a treatment, has shown to improve the quality of life for some individuals. Atropine, atropine sulfate, safe, effective drugs that have prevented most Reflex Anoxic Seizures in the short term for children having severe and frequent attacks.
About STARS.
STARS a registered 501(c)3 tax-deductible non-profit organization is committed to improving the quality of life for individuals and their families coping with Syncope conditions. Whose aims are to address the disadvantages, discrimination and stigma experienced by people living with these afflictions. STARS main focus is on education and supporting sufferers, their families, the medical community and general public by creating a support system where they can obtain knowledge and understanding of Syncope conditions. STARS will also promote research into the diagnosis and management of Syncope, to publicly publish the results to alert patients, the general public and the medical community.
Contributing to STARS.
STARS is seeking private and institutional contributions to fund educational and training programs, creating and distributing educational tools, training materials, supporting and educating sufferers, their caregivers and medical professionals through a toll free helpline, website, regional, national meetings, newsletters, monthly e-bulletins and funding scientific research.
STARS Sponsor:
STARS has attracted support in the form of board participation from prominent individuals in the, corporate business, philanthropic and medical communities, such as Daniel Beach, Director of Communications, Medtronic Cardiovascular, Professor Blair Grubb, Cardiologist, Toledo University Hospital, Ohio, Mrs. Linda Kadesch, Hilton Head Island, South Carolina, Dr. Phillip Saul of the Children’s Heart Program of South Carolina at MUSC.
For more information, or to contribute to STARS contact:
Rebecca Smith, Executive Director, (843) 785-4101, rsmith@stars-us.org, www.stars-us.org
BLACKOUTS AND SYNCOPE NON-PROFIT
LAUNCHED IN UNITED STATES
A million and a half Americans each year can now access
a new source of support and education.
South Carolina, Oct 2007- STARS an international non-profit organization has announced that it has established STARS-US, a national non-profit organization that is dedicated to supporting United States families and medical professionals to improve the diagnosis and care of Syncope conditions.
Affecting a million and a half Americans each year. Syncope is the medical term for a faint or blackout caused by a sudden lack of blood supply to the brain. Tragically, more that 40% of Americans with Syncope are either misdiagnosed or go undiagnosed. Syncope usually results from a heart rhythm or blood pressure regulation problem.
If you have Syncope, your life is turned upside down, you’re prohibited from driving, and you could fall unconscious at anytime, perhaps even losing bladder control. The embarrassment and the anxiety can ruin lives yet, if diagnosed correctly, most patients can be simply and effectively treated.
Since founding STARS in the UK in 1993, Trudie Lobban has seen a tremendous growth in the demand for information from US syncope sufferers. “We really had no choice but to set up an operation in the United States. Syncope can be extremely difficult to diagnose leaving sufferers, parents and doctors in a terrifying limbo-not knowing what’s wrong, and living in constant fear of another attack, let alone the consequence. I started STARS because it began to affect my daughter, Francesca, when she was very young. I felt as though Francesca was on the verge of death every time it happened. No-one could explain what was going on, or recommend a treatment. Today we receive 8,000 requests from people in just that position every month. Such a large proportion of these come from the US, we are delighted that we’re now able to open a dedicated organization, focused just on the ever-increasing needs of US families and doctors facing the specter of unexplained blackouts.”
FACTS on Syncope in the United States:
· Syncope affects 1.5 million American patients for the first time each year.
· It accounts for 10 billion dollars in doctor and hospital expenses each year.
· Yet up to 50% of patients leave the hospital without a clear diagnosis
· 10% of falls by the elderly are due to Syncope.
Syncope is often dismissed as simple fainting, but for a significant number of patients, the blackout is anything but simple. Complex Syncope (Reflex Anoxic Syncope or severe Vasovagal Syncope) often appear just like a “seizure” or “fit”, this leaves many patients with a tragically incorrect diagnosis of epilepsy. It is very important to make sure that syncope and epilepsy are distinguished from each other; this is a vital component of STARS’ educational effort around the world.
What is Reflex Syncope or RAS (Reflex Anoxic Seizures)?
RAS occurs mainly in young children. Any unexpected stimulus, such as pain, shock, or a fright, causes the heart and breathing to stop, the eyes to roll up into the head, complexion to become deathly white, the body to stiffen and the arms and legs to jerk. After 30 seconds the body relaxes and the heart starts beating. RAS attacks may occur several times per day/week/month. The attacks appear to come in batches. There is no cure, but advances have been made with the use of a pacemaker where cardiac pacing, a treatment, has shown to improve the quality of life for some individuals. Atropine, atropine sulfate, safe, effective drugs that have prevented most Reflex Anoxic Seizures in the short term for children having severe and frequent attacks.
About STARS.
STARS a registered 501(c)3 tax-deductible non-profit organization is committed to improving the quality of life for individuals and their families coping with Syncope conditions. Whose aims are to address the disadvantages, discrimination and stigma experienced by people living with these afflictions. STARS main focus is on education and supporting sufferers, their families, the medical community and general public by creating a support system where they can obtain knowledge and understanding of Syncope conditions. STARS will also promote research into the diagnosis and management of Syncope, to publicly publish the results to alert patients, the general public and the medical community.
Contributing to STARS.
STARS is seeking private and institutional contributions to fund educational and training programs, creating and distributing educational tools, training materials, supporting and educating sufferers, their caregivers and medical professionals through a toll free helpline, website, regional, national meetings, newsletters, monthly e-bulletins and funding scientific research.
STARS Sponsor:
STARS has attracted support in the form of board participation from prominent individuals in the, corporate business, philanthropic and medical communities, such as Daniel Beach, Director of Communications, Medtronic Cardiovascular, Professor Blair Grubb, Cardiologist, Toledo University Hospital, Ohio, Mrs. Linda Kadesch, Hilton Head Island, South Carolina, Dr. Phillip Saul of the Children’s Heart Program of South Carolina at MUSC.
For more information, or to contribute to STARS contact:
Rebecca Smith, Executive Director, (843) 785-4101, rsmith@stars-us.org, www.stars-us.org
Sunday, September 28, 2008
Try the Women to Women Personal Program!!
I urge anyone suffering from chronic pain to try the Women to Women Personal Program. I put it off for years, knowing about this program for quite some time and receive their newsletters all the time. I finally "caved in" and bought the supplements (vitamins & herbals) and within TWO DAYS my chronic pain is practically gone and I have more energy than I've had in years. I can hardly believe it. Hubby says it's just a placebo effect, but I don't care, it works that's all I care about! Seriously, it's kind of expensive, so beware, but if you can afford it, wow I can't sing their praises enough. If you want to check out their web site (full of great information -- you could get lost there for hours!) it's www.womentowomen.com
Sunday, August 17, 2008
Press Release from NFA
FOR IMMEDIATE RELEASE
4 August 2008
Fibromyalgia CME Program Receives Accreditation from
the American Academy of Family Physicians
ANAHEIM, Calif. (August 4, 2008)—The National Fibromyalgia Association today announced that its FAME (Fibromyalgia Assessment, Management and Education) program has received continuing medical education (CME) accreditation from the American Academy of Family Physicians. The FAME project, a partnership launched in 2006 between California State University, Fullerton and the National Fibromyalgia Association (NFA), is one of the first web-based continuing medical education programs designed specifically for healthcare providers who treat people with fibromyalgia.
“Physician education is vital to successful diagnosis and treatment of fibromyalgia,” says Lynne Matallana, president and founder of the NFA. “The program will help to reduce health disparities and improve the delivery of care to people affected by this life-altering disorder.”
An estimated 10 million Americans suffer from fibromyalgia (FM), a chronic pain disorder characterized by widespread pain, general fatigue and sleep disturbances. Currently 50% of fibromyalgia patients remain undiagnosed at any time and a correct diagnosis may take as long as 5 to 8 years from the disease onset. Many healthcare providers also lack confidence in identifying fibromyalgia and are reluctant to diagnose patients with the condition, according to a recent NFA survey.
The FAME project will help to increase the number of trained healthcare providers available to treat and care for persons with FM. It consists of two programs divided into eight module presentations. The first three —Overview of Fibromyalgia, Comprehensive Assessment of FM and Overlapping Conditions, and Pharmacological Management —makeup the Core FM Program. The Supportive FM Program offers sections on Cognitive Behavioral Therapy, Exercise Training, Nutrition, Biofeedback Training and Therapeutic Yoga.
The educational program has also received accreditation for continuing education (CE) credits from the American Academy of Nurse Practitioners, the California Board of Registered Nursing, The National Commission for Health Education Credentialing, Inc., the California Physical Therapy Association and the National Board for Certified Counselors. Approval is pending from the Board of Certification, Inc.
Developed and implemented through a grant from UniHealth Foundation, the programs will be offered online free of charge through August 2009. The $300,000 grant is the first grant that the UniHealth Foundation has awarded for a project involving fibromyalgia. For information or to register for the CME/CE program, visit http://www.fibromyalgia-cme.com/.
4 August 2008
Fibromyalgia CME Program Receives Accreditation from
the American Academy of Family Physicians
ANAHEIM, Calif. (August 4, 2008)—The National Fibromyalgia Association today announced that its FAME (Fibromyalgia Assessment, Management and Education) program has received continuing medical education (CME) accreditation from the American Academy of Family Physicians. The FAME project, a partnership launched in 2006 between California State University, Fullerton and the National Fibromyalgia Association (NFA), is one of the first web-based continuing medical education programs designed specifically for healthcare providers who treat people with fibromyalgia.
“Physician education is vital to successful diagnosis and treatment of fibromyalgia,” says Lynne Matallana, president and founder of the NFA. “The program will help to reduce health disparities and improve the delivery of care to people affected by this life-altering disorder.”
An estimated 10 million Americans suffer from fibromyalgia (FM), a chronic pain disorder characterized by widespread pain, general fatigue and sleep disturbances. Currently 50% of fibromyalgia patients remain undiagnosed at any time and a correct diagnosis may take as long as 5 to 8 years from the disease onset. Many healthcare providers also lack confidence in identifying fibromyalgia and are reluctant to diagnose patients with the condition, according to a recent NFA survey.
The FAME project will help to increase the number of trained healthcare providers available to treat and care for persons with FM. It consists of two programs divided into eight module presentations. The first three —Overview of Fibromyalgia, Comprehensive Assessment of FM and Overlapping Conditions, and Pharmacological Management —makeup the Core FM Program. The Supportive FM Program offers sections on Cognitive Behavioral Therapy, Exercise Training, Nutrition, Biofeedback Training and Therapeutic Yoga.
The educational program has also received accreditation for continuing education (CE) credits from the American Academy of Nurse Practitioners, the California Board of Registered Nursing, The National Commission for Health Education Credentialing, Inc., the California Physical Therapy Association and the National Board for Certified Counselors. Approval is pending from the Board of Certification, Inc.
Developed and implemented through a grant from UniHealth Foundation, the programs will be offered online free of charge through August 2009. The $300,000 grant is the first grant that the UniHealth Foundation has awarded for a project involving fibromyalgia. For information or to register for the CME/CE program, visit http://www.fibromyalgia-cme.com/.
Saturday, June 28, 2008
Anemia - the often undiagnosed epidemic
Women: please! Get yourselves checked for anemia. This is an often easy-to-treat problem, and incredibly easy to diagnose. However, this epidemic (as some experts believe) is often overlooked and undiagnosed, with perhaps millions of women being told "it's all in your head" or "there's nothing wrong with you". There is no excuse for this. Doctors: please! when a woman comes to you with annoying symptoms do not "diss" her -- test her for anemia, and then educate yourself on the symptoms of anemia.
I was told that my symptoms were NOT from my hereditary anemia by several doctors. Guess what, that is not true! All of my symptoms are from anemia. Every single one of them. Yet not even the hematologist nor the neurologist nor the rheumatologist suggested anything of the kind. It was simply "No" (from the hematologist) and "there's nothing wrong with you" from the others. Do not let this happen to you! Get yourself tested, and educate yourself on anemia. Below are some links to help you get started. Check out Wikipedia as well.
I found this web site anemia.org. This non-profit organization was created by medical professionals who see anemia as a huge epidemic in the United States and want to bring this fact to the attention of the medical establishment, ordinary physicians, and citizens in general. They estimate that 3.4 million people have been diagnosed with anemia (in one form or another), but that this estimate is low, and that anemia is much more serious of a health concern than people realize.
Anemia is often UNDIAGNOSED, even though a simple, routine blood test can detect anemia very easily.
As you can imagine, since I have been diagnosed with a hereditary form of hemolytic anemia, I am on my latest crusade! I totally agree with these folks that anemia is seriously under-diagnosed. In fact, perhaps my journey of the last 5 years would have been significantly shortened had any one doctor taken the time to learn that the symptoms I am experiencing ARE symptoms of anemia (contrary to what they all told me).
I hope to be able to invove myself in this organization somehow, and am planning to write a letter to their executive director.
In the meantime, here are some links you may find interesting:
http://www.anemia.org/patients/symptoms-quiz/
http://www.anemia.org/resources/education-kit/about.php
http://www.anemia.org/patients/faq/
http://www.anemia.org/
http://www.anemiainwomen.com/html/home.htm
K2
I was told that my symptoms were NOT from my hereditary anemia by several doctors. Guess what, that is not true! All of my symptoms are from anemia. Every single one of them. Yet not even the hematologist nor the neurologist nor the rheumatologist suggested anything of the kind. It was simply "No" (from the hematologist) and "there's nothing wrong with you" from the others. Do not let this happen to you! Get yourself tested, and educate yourself on anemia. Below are some links to help you get started. Check out Wikipedia as well.
I found this web site anemia.org. This non-profit organization was created by medical professionals who see anemia as a huge epidemic in the United States and want to bring this fact to the attention of the medical establishment, ordinary physicians, and citizens in general. They estimate that 3.4 million people have been diagnosed with anemia (in one form or another), but that this estimate is low, and that anemia is much more serious of a health concern than people realize.
Anemia is often UNDIAGNOSED, even though a simple, routine blood test can detect anemia very easily.
As you can imagine, since I have been diagnosed with a hereditary form of hemolytic anemia, I am on my latest crusade! I totally agree with these folks that anemia is seriously under-diagnosed. In fact, perhaps my journey of the last 5 years would have been significantly shortened had any one doctor taken the time to learn that the symptoms I am experiencing ARE symptoms of anemia (contrary to what they all told me).
I hope to be able to invove myself in this organization somehow, and am planning to write a letter to their executive director.
In the meantime, here are some links you may find interesting:
http://www.anemia.org/patients/symptoms-quiz/
http://www.anemia.org/resources/education-kit/about.php
http://www.anemia.org/patients/faq/
http://www.anemia.org/
http://www.anemiainwomen.com/html/home.htm
K2
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