Understanding Fibro Fog

A Little Something to Help You Get Started Thinking About
Fibro Fog:
(Kitchener-Waterloo Fibromyalgia Newsletter)

You know you have fibrofog when......

You boil the kettle dry three times to get one cup of tea.

You read a note you wrote to yourself to pay a bill, and you wonder who the heck is Bill.

You call the school twice, to let them know your child is at home sick.

You can't disconnect the dishwasher from the kitchen tap, because you didn't turn the water off first to release the pressure.

Many people with Fibromyalgia like to make jokes about Fibro Fog because it's often embarrassing and even frightening. A common scenario: You're having a conversation with someone when suddenly, in the middle of the sentence that's coming out of your mouth, your brain seems to turn itself off. Your mouth hangs open as you desperately search for what you were just saying two seconds ago. But it's no use. Where there once was a clear distinguishable thought in your head, there is nothing left but a vacuous black hole of nothingness. This kind of short-term memory loss is experienced by every Fibromyalgic.

"The wheel is turning, but the hamster left town," as Devin Starlanyl and Mary Ellen Copeland put it in their book, Fibromyalgia and Chronic Myofascial Pain: A Survival Manual, which devotes an entire chapter to Fibro Fog and other cognitive deficits. "You may spend hours every day trying to find various items, like your keys. (After a while, you may feel as though your mind is one of those misplaced items.) You may not recognize things when they are right in front of you but are not in their accustomed place, or when it's in a different package or form."

Research at the University of Michigan has validated the reality of fibro fog. The researchers observed a similarity between neuroendocrine dysfunction in patients with FM and older but otherwise healthy people. They compared three groups of people: First, a group of people with FM. Second, a control group of healthy people who were similar to those with FM in age and educational background. And third, a group of healthy people with similar educational backgrounds as the others, but who were 20 years older than the other two groups. Because cognitive function begins to decrease, even in healthy people, as soon as adulthood is reached, the three groups were given various age-sensitive neuropsychological testing to see the extent to which Fibromyalgia affected cognitive dysfunction as compared to the normal cognitive loss caused by aging.

The researchers found that people with Fibromyalgia do not have the same mental agility as healthy people of the same age. Their verbal fluency, long-term memory, and working memory (how much information you can use, manipulate and store at one time) was at the same level of capability as those in the older group. The people with Fibromyalgia performed even worse, scoring lower than the older group and showing a serious deficit when it came to vocabulary, a cognitive function that doesn't normally decline with age.

The findings of this research is important in two ways: First, it validates cognitive deficits in people with Fibromyalgia. Second, whatever is going on to cause the cognitive deficits in people with FM, it is not the same as that which occurs with natural aging. (See: Starlanyl & Copeland, 17:203)

Another study done in 1999 by Glass, Park and Crofford researched metamemory, which is our ability to accurately assess our own memory skills. The three researchers used a control group and a third older group of people, just as in the reported study above. Not only were the three scientists after how well Fibromyalgics could assess their own memory skills, they also wanted to rule out depression and poor motivation as possible causes of cognitive dysfunction. The FM patients were asked how well they felt they could perform simple tasks, such as dialing a telephone and shopping for a few items without a list. The Fibro patients reported lower memory capacity, less control over their memory function, more cognitive deficits, and greater memory deterioration than the older group. The study found that the people with Fibromyalgia were entirely accurate in their assessments. In fact, the Fibro patients used more memory improvement strategies, like lists and calendars, and were more highly motivated as to the importance of keeping a good memory, and although they had more anxiety about memory function than the other two groups, their cognitive dysfunction was not a result of depression.

"These patients were trying to make the most of what they have in every way they knew how. They reported a greater perception of loss than the older control group did, even though their memory loss was similar," says Starlanyl and Copeland, who also report that the study found "this as an accurate perception, since the cognitive function of the FM patients is not age-appropriate." (See: 17:203).

And let's not forget that on top of this general deficit of cognitive function every Fibromyalgic has, there are also those "attacks" of Fibro Fog. Not only can Fibro Fog vary in severity among people with Fibromyalgia but it also can vary in intensity with each individual from hour-to-hour, day-to-day, month-to-month etc. There's no telling when a particular nasty "attack" of Fibro Fog will hit on top of the every day cognitive problems of someone with FM.

This particularly nasty symptom of Fibromyalgia can range from forgetfulness and being muddled headed, like finding your wallet in the refrigerator, to a state that is quite severe. For instance, someone with an extreme case of Fibro Fog might be returning home from the grocery store they've been going to for the last 10 years. They'll be traveling the same route home they take every single time they go to their grocery store. Suddenly, nothing seems familiar. They don't recognize landmarks and everything looks different. They very easily become lost, traveling round in circles or worse, "coming to" in another town or city entirely.

There are a few theories as to why FM sufferers experience Fibro Fog. John Lowe believes the Fibromyalgic's brain receives an insufficient delivery of oxygen, glucose, and other substances the brain needs to function properly. Inadequate thyroid hormone regulation may be causing the metabolic rate and the flow of blood to the brain cells to be defective as well. (See: Wrutniak-Cabello, C., F. Casas, and G. Cabello. 2001. Thyroid hormone action in mitochondreia. J Mol Endocrinol 26(1): 67-77.)

Research conducted with Single Photon Emission Tomography scans show that people with FM have decreased blood flow in the right caudate nucleus of the brain and also in the left and right thalami. It's speculated that the decreased blood flow could be caused by a neurotransmitter dysfunction or by a problem in the glial cells. Glial cells are crucial to our brains because they're active in brain cell permeability, meaning they allow much needed substances to pass into the brain's cells, such as electrical ions. Without this permeability, brain function deteriorates.

There's also a bioelectric connection between glial cells, ion exchange, and cellular swelling in the brain. Because the glial cells have such an increased permeability in the brain of a Fibromyalgic, far too much fluid is allowed into the brain cells. These swollen cells not only account for migraines (where the menningeal blood vessels become hyperpermeable), a common accompanying illness many Fibromyalgics suffer, but also for a generalized increased pressure, which in turn affects cognitive processes. Therefore, these defective cognitive processes, or Fibro Fog, may be due to this flooding of the brain cells and could account for reports from those suffering with FM that their brains feel swollen. In fact, Starlanyl and Copeland say perhaps the brain is really physically swollen. (See: 17:201) But how does Fibro Fog physically feel to a Fibromyalgic that is suffering from it? The sensation, many patients report, feels like the brain has become very heavy and big and slow in a suddenly too small skull.

With migraines, this sensation of heaviness and largeness can grow and grow, until the brain feels like it is trying to push against the inside of the skull and any minute the head will explode. The pressure inside the skull is enormous and in many will cause actual swelling of facial features, protruding eyes and swollen gums. Obviously this is all excruciatingly painful. In fact, it is not all that uncommon for someone with a migraine to have the urge to or actually physically hit their head against a wall repeatedly in a useless attempt to rid their heads of the pressure from the swollen brain cells. Motor actions degenerate and to move their head even slightly brings monumental amounts of pain cracking through their brain and skull. The swollen, pressured brain cells can also cause sensory malfunctions like double vision, extreme sensitivity to light and sound, halo-like rings around light sources, patches of white or black in the vision field and much more.

Starlanyl and Copeland also report that a Fibromyalgic's chronic pain itself could be affecting their cognitive abilities: "In one study, researchers found that some chronic pain patients performed some tests more poorly than patients with head injuries. This study suggests that pain can disrupt cognitive performances that depend on intact speed and storage capacity for information processing. Processing pain occupies most or all of our thought processing networks, thereby interfering with concurrent cognitive tasks such as thinking, reasoning, and remembering." (See: 17:201)

In other words, if someone with FM suffers an increase in their pain levels, like they commonly do in the morning, tasks like picking out what clothes to wear can become mind boggling and an insurmountable job.

Some people can spend days at a time in a Fibro Fog with their cognitive deficits worsening: Unable to speak correctly. Unable to read or to write a sentence a child could do. Unable to remember familiar things like the names of relatives or how to spell "cat". Unable to turn on the stove not only because they forget the mechanics, but also out of the fear they'll forget they're cooking something and start a fire. Unable to remember things, looking everywhere for their cars keys until they're exhausted and can't go out to do their errands and then finding the keys by accident in the freezer with the ice cream they bought two days ago. Unable to take the same amount of sensory input someone who doesn't suffer from Fibromyalgia can, such as exposure to large crowds, or a lot of noise, or the multitudes of visual and physical actions of driving for hours on end, especially at night when light sensitivity makes it an even more difficult task. Unable to concentrate or socially interact because their intense amounts of pain are interfering with their cognitive skills to the point of distraction. Unable to do all of these things just listed and so much more because their minds function at a cognitive level worse than someone far older than them. And take note that all these many negative and life restricting things listed and described as belonging to someone suffering with Fibromyalgia only focuses on what Fibro Fog does to them. All the other symptoms and difficulties, which descend on someone with Fibromyalgia, like extreme pain and chronic fatigue to name only two of the dozens a Fibromyalgic can suffer from, were not even taken into consideration when describing how a Fibromyalgic lives a limited, constricted and socially isolating life.

4 Treatments for Fibromyalgia By Mehmet Oz, MD

I was just going to provide a link for this article, but decided to copy from O, The Oprah Magazine Website for easier reading. You can also click on the title above and it will take you to the original article on the website.

4 Treatments for Fibromyalgia

By Mehmet Oz, MD

Photo: Ben Goldstein/Studio D

Dr. Oz will see you now! In his first O column, he analyzes the different treatments for fibromyalgia.

Defining Fibromyalgia: Though classified as a disorder of the musculoskeletal system, the condition is now seen as a central nervous system problem. Symptoms include increased sensitivity to pain, achy and stiff joints, fatigue, and specific tender points on the back, chest, arms, and legs. Migraines, sleep disorders, and irritable bowel syndrome are also common complaints. Up to 3 percent of the population may suffer from fibromyalgia, but with no clear cause, the condition is difficult to diagnose.

Western Medicine Approach: A formal diagnosis for fibromyalgia didn't exist until 1990, but now there are three FDA-approved meds to combat the pain. Still, says Nancy Klimas, MD, director of the Allergy and Immunology Clinic at the University of Miami, "there is much more to treatment than a pill." Strategies are needed to improve sleep, stretch and restore symmetry to muscles that have been shortened by spasm, and raise overall conditioning through exercise.

Energy-Based Approach: Practitioners believe the root of fibromyalgia is a disturbance in nerves that blocks energy. The disturbance, says Devi S. Nambudripad, MD, PhD, and a licensed acupuncturist, is caused by sensitivities to substances ranging from pollen to vaccines to chemical agents in fabrics. Anxiety and depression may also play a part. Practitioners use acupuncture to release energy and allergy testing to identify problem substances.

Psychological Approach: "The pain of fibromyalgia is not caused by depression," says Leonard Jason, PhD, professor of psychology at DePaul University, "but depression can deepen a patient's experience of pain." Mental health professionals may play a complementary role in treatment, but it's a vital one. Cognitive behavioral therapy can relieve depression and help patients identify sources of stress that magnify their symptoms.

Nutrition-Based Approach: Fibromyalgia is a systemwide breakdown, says Jacob Teitelbaum, MD, medical director of the nationwide Fibromyalgia & Fatigue Centers. After suffering from the disease in the 1970s, he developed his own protocol; in studies, patients improved by as much as 91 percent. He recommends supplements to help sufferers sleep, balance hormones, boost immunity, and improve nutrition. He also prescribes regular exercise. (Try Dr. Oz's 20-minute workout plan)

My Recommendation: Because Western medicine was slow to accept fibromyalgia, it is behind in its work; this is an area where patients will want to take a serious look at alternative approaches. Energy-based medicine could offer some important advances in treatment over the next decade, but since it has yet to be tested by independent research, I think it's premature to base your therapy solely on this approach. I'm more impressed by Teitelbaum's supplement regimen, and not only because he has tested his theories: I've put patients on this program with very good results. I would add counseling, as it should always be a part of fibromyalgia treatment. If after a couple of months you don't see improvement, talk to your doctor about drug therapy.

What Should an FM or ME/CFS Patient Do About the Swine Flu?

What Should an FM or ME/CFS Patient Do About the Swine Flu?

by Dr. Charles Lapp, MD*, September 8, 2009

From the August issue of Dr. Lapp’s free e-newsletter (www.drlapp.net/news.htm)

In June 2009 the World Health Organization declared that the spread of a novel H1N1 Swine Flu had reached pandemic levels. At the time of this writing, the swine flu has become widespread in the southern United States, especially the Southeast. However, the illness prevalence, the number of doctor visits, and the morbidity is still no worse than the usual seasonal influenza. It is expected that the number of cases will increase as school resumes because H1N1 is rapidly spread by coughing and sneezing, hand-to-hand, or hand-to-body contact.

Many patients have been alarmed by reports of the seriousness and infectivity of this new flu, and have asked if vaccination is advisable. Our usual recommendations on influenza vaccinations are that:

• That they have been known to trigger flares of CFS/ME/FM,

• That many PWCs to do not respond to vaccination anyway,

• And that viral infections are uncommon in most PWCs due to upregulation of the immune system.

Therefore, we would recommend seasonal flu vaccination only if you have tolerated these well in the past and if you are at high risk.

Because the current swine flu is so novel, a new vaccine needs to be produced. This is not expected to be available until late October.

Unlike seasonal influenza, H1N1 mostly attacks younger age groups, particularly under age 24. Vaccine availability will be limited, so it will be offered to specific target groups first. These include:

• Pregnant women,

• People who live with or care for children younger than 6 months of age,

• Healthcare and emergency medical services personnel,

• Persons between the ages of 6 months and 24 years old,

• And people ages of 25 through 64 years of age who are at higher risk for novel H1N1 because of chronic health disorders or compromised immune systems.

We do NOT consider the immune system in CFS/ME to be compromised to the point of being “high risk” unless there is a history of frequent viral infections and/or pneumonia.

Based on information available at this time, H1N1 immunization may not be available to the majority of our patients until late Fall, perhaps well after the swine flu peak. Therefore, we are recommending that our patients:

• Avoid crowds and sick people (especially coughers and sneezers!),

• Wash your hands frequently or use alcohol-based hand cleansers,

• Avoid touching your eyes, nose, or mouth with your bare hands.

The symptoms of novel H1N1 flu virus in people include fever, cough, sore throat, and runny nose, body aches, headache, chills and fatigue, possibly diarrhea and vomiting. If you suspect that you have contracted swine flu:

• Immediately contact your primary care office or Hunter-Hopkins for advice and possibly medication

• Avoid contact with others for at least 24 hours after the fever subsides

• Consider wearing a surgical face mask if others are around you

• Recognize these warnings signs and seek medical assistance immediately for difficulty breathing or shortness of breath, pain or pressure in the chest or abdomen, sudden dizziness, increased confusion, severe or persistent vomiting, and flu-like symptoms that improve but then return with fever and worse cough.

In lieu of swine flu vaccination two antiviral medications can be taken to reduce the symptoms and severity of the illness.

These must be started within 48 hours of illness onset, and are not recommended for prevention of the flu. The adult doses of these medications are:

• Tamiflu / oseltamivir (75 mg tablets taken twice daily for 5 days) or

• Relenza / zanamivir (two inhalations twice daily).

For more information go to the Center for Disease Control website at www.cdc.gov/h1n1flu/

* Dr. Charles Lapp, MD
Hunter Hopkins Medical Center
Charlotte, North Carolina
drlapp@drlapp.net
10344 Park Road, Suite 300 - until October, then:
721 Carmel Executive Park Drive, Suite 320
Charlotte, North Carolina 28226
____
Note: This information has not been evaluated by the FDA. It is general and should not replace the attention and advice of your personal physician. Nor is it meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

Dealing with Fibro-Fog

By Karen Lee Richards

My best friend from Florida came to visit me here in Tennessee so she could take fall leaves back for the children in her Montessori pre-school. In our quest to find the most beautiful leaves, we headed for the Blue Ridge Parkway, well known for its stunning scenery. No sooner had we gotten on the parkway than we found ourselves in the midst of one of the worst fogs I ever experienced. We could literally only see about three feet in front of the car. I was struck by was how similar it felt to being in the midst of a severe bout of fibro-fog!

The cognitive dysfunction so many of us with fibromyalgia deal with daily is aptly described by the term “brain fog,” or by my favorite pet name “fibro-fog.” Our minds feel clouded by a thick fog. We are unable to see (or think) more than a few feet (or minutes) ahead.

See if any of these fibro-fog experiences sound familiar. Do you ever…

…get ready to walk out the door and realize you have no idea where the car keys are?

…put the milk in the cabinet and the cereal in the refrigerator?

…run into an old friend and forget her name?

…find yourself driving down a road unable to remember where you are going?

…buy something, not remembering that you bought the exact same think a week ago?

…try to describe or explain something but you cannot think of the word you want to use?

…stop in the middle of a conversation because you cannot remember what you are talking about?

…forget when you last took your meds?

…bounce a check because you added instead of subtracted?

…show up for your doctor appointment on the wrong day?

The forgetfulness, difficulty concentrating and confusion characteristic of fibro-fog is occasionally amusing and often frustrating. But sometimes it can be downright dangerous –– like forgetting that you have chicken frying on the stove or not noticing that a traffic light has turned red. While it is good to be able to laugh at yourself over the little incidents of forgetfulness, it is important to take steps to improve your cognitive functioning so that you do not jeopardize the safety and well-being of yourself or your loved ones.

Increase Blood Flow

Although a clear-cut cause for fibro-fog has yet to be identified, various brain-imaging techniques have clearly shown that the majority of people with fibromyalgia and/or chronic fatigue syndrome have decreased blood flow, and thereby decreased oxygen, to specific areas of the brain. Therefore, the first step in dealing with fibro-fog is to try to increase blood flow and oxygen to the brains. Here are a few tips to get your blood flowing northward:

• Exercise –– Exercise increases blood flow and oxygen to the brain. Exercising with music doubles the effectiveness. Charles Emery, Ph.D., a clinical psychologist at Ohio State University in Columbus, conducted a research project in which participants were tested for mental performance after exercising both with and without music. Participants performed more than twice as well on a verbal fluency test when they exercised with music.
• Sleep – Getting enough sleep is critical for good brain function. Not coincidently, getting good restorative sleep is one of the major problems for people with FM. The foods you eat can have a significant effect on how well you sleep. Some foods, like milk and turkey, can help you fall asleep. Others, like caffeine-laden drinks, chocolate, excessive sugar, and MSG, can cause agitation and keep you awake. For additional information about improving sleep, go to the National Fibromyalgia Associations website, www.FMaware.org. If you do a search for “sleep,” you will find several helpful articles.
• Breathe –– While breathing seems like a normal, involuntary action, the fact is that most people with FM actually hold their breath much of the time. Although holding your breath is a natural reaction to pain, it deprives your body of necessary oxygen. Try to make yourself aware of times you are unconsciously holding your breath and make a conscious effort to take two or three deep breaths several times a day.
• Check medications –– Certain drugs can increase brain fog. Some of the medications that may make your memory worse are: calcium channel blockers (for hypertension), analgesics (for pain), hypnotics (for sleep), and antihistamines (for allergy or sinus problems). If you suspect that one or more of your prescriptions are increasing your fibro-fog, talk with your doctor to see if a lower dosage or a different medication might help.
• Improve nutrition –– Recent research suggests that getting enough of certain nutrients –– particularly iron, zinc and B vitamins (especially folic acid, B6 and B12) –– may help cognitive functioning…or at least prevent it from getting worse. Iron and zinc are found in meat, poultry, seafood, whole grains and dried beans. The B vitamins are found in whole grains, meat, poultry, seafood, eggs, dairy products, leafy green vegetables, beans, peas and citrus fruits. Additionally, it is important to fight the free radicals seeking to damage our brain cells by eating a diet rich in antioxidants. Antioxidants are found in fruits and vegetables, especially those with the darkest and brightest colors, like spinach, carrots, tomatoes and red bell peppers.
• Consider supplements –– If you feel your diet is not supplying adequate amounts of the nutrients mentioned above, you might consider adding one or more vitamin and mineral supplements. Other supplements that some have found helpful in lessening fibro-fog are Coenzyme Q10, Gingko Biloba and NADH (a coenzyme made from vitamin B2). Always check with your doctor or pharmacist before taking any supplement to make sure there are no dangerous interactions with medications you may be taking.

Mental Exercise

In addition to physical exercise, emerging evidence is showing that mental exercise can also help improve memory, concentration and problem-solving abilities. Mental exercise can be any activity that causes your mind to think logically, focus, strategize, sort, calculate, or create. Choose at least one mental exercise that you enjoy and spend some time each day “working out” your brain. Following are examples of a few brain-exercising activities:

• Work a challenging crossword puzzle.
• Solve a word search puzzle.
• Put together a difficult jigsaw puzzle.
• Play a game that forces you to think or strategize, like Scrabble, chess or bridge.
• Make up a fairy tale.
• Choose a Norman Rockwell painting and create a story about it.
• Memorize a poem, proverb or Bible verse.
• Read a book.
• Play a musical instrument.
• Learn a new language.

If you find yourself in the midst of a thick mental fog, do not allow yourself to get lost there. You can work your way through it and find some clarity again. It is ironic that for about a month prior to writing this article, I went through one of the worst bouts with fibro-fog I have ever experienced. I felt like I was living in la-la land. But, using many of these tips, I found my way through the fog…and so can you.

___________________
Reprinted with permission of the National Fibromyalgia Association from Fibromyalgia AWARE, December 2004 – March 2005.

Article About My Support Group

This article was printed in today's Charlotte Observer about my ME/CFS/FM Support Group. Luckily I am not in the picture but you can see my mom's right arm in the 2nd row on the far right-LOL.

This group has been very helpful to me and Dr. Lapp is an amazing doctor who is internationally recognized as one of the best FM doctors in the world.

Just so you know, the clutter question came from me since I noticed so many people wanted to clean areas, including me-My target was to work on clearing off a table in my office, 3 times a week, for 30 minutes. Well I haven't been able to start that one yet.

Anyway-here is the article:

Sick and tired finds company
By Karen Garlochkgarloch@charlotteobserver.com
Posted: Monday, Mar. 30, 2009

Dr. Charles Lapp leads a series of free classes at the Sharon Presbyterian Church in Charlotte for people with chronic fatigue syndrome & Fibromyalgia.

Most of the 15 people gathered for a support group this month did not look sick.
But when they began to talk about their common conditions, the list of symptoms went on and on.
Pain, fatigue, depression. Insomnia, nausea, headaches. Muscle spasms, ringing in the ears and sensitivity to heat, cold or light.
Dr. Charles Lapp has heard all of this before. He's medical director of the Hunter-Hopkins Center, a Charlotte clinic that focuses on patients with chronic fatigue syndrome and fibromyalgia. Many group members are his patients.
But instead of letting the support group descend into gloom and despair, Lapp tries to lead with hope and help.
He's currently offering a new series of free classes that help patients take back some control over their lives and better cope with the main symptoms: pain, fatigue and insomnia.
“They're all related to one another,” Lapp said. “If one gets worse, the others get worse. Conversely, if you treat one and it gets better, the others get better, too.”
Some 9 million U.S. adults suffer from chronic fatigue syndrome, but many go undiagnosed, according to the Centers for Disease Control and Prevention. Fibromyalgia affects as many as 6 million, says the CDC.
It's often difficult to distinguish between the two medical conditions. Some experts believe they are separate disorders. Others feel they are different facets of the same disorder. Pain is the primary symptom of fibromyalgia; fatigue is the main symptom in chronic fatigue syndrome.
The course Lapp is teaching was developed by Bruce Campbell, a California educator and psychologist who based the curriculum on his own experience in overcoming these often-misunderstood conditions.
Campbell's personal prescription involved “enforced rest” – setting limits and taking short rest periods every day – in addition to regular exercise, emotional support and medicine for symptom control.
“He was able to totally recover in five years,” Lapp said. “He can easily hike 10 to 15 miles, which is the envy of many patients with chronic fatigue syndrome and fibromyalgia.”
Clutter is common
At the recent support group meeting, Lapp asked the members – mostly women – to identify small, specific tasks they'd like to accomplish. Some mentioned the need to go to bed earlier or exercise regularly. Several wanted to organize their homes and get rid of clutter.
The clutter problem is almost universal with these patients, Lapp said. “They get so distracted that they start multiple projects, and the house ends up … a mess. It's overwhelming.”
As always, the group members offer ideas and support.
“Instead of trying to take on the whole room, maybe you could take on a table,” suggested Maggie Reed, 47, of Fort Mill.
“Or a corner of the table,” said Leslie Vann, 56, also from Fort Mill.
When Lapp asked for ideas on how to prevent fatigue and pain, suggestions included hot showers, massage, deep breathing and petting the dog.
Reed, who has suffered from chronic fatigue syndrome and fibromyalgia since 2006, said she visualizes a backyard pool and the landscaping she'd like to have around it to get her mind off pain or stress. “I go to what I call my ‘happy place,'” she said.
Kebbie Cannon, 45, of Waxhaw, who has had chronic fatigue syndrome for 22 years, said she tries not to get too cold because that causes her muscles to tense up in pain.
To the contrary, Reed said she works to avoid getting too hot. “I start to feel like I'm suffocating.” Several in the room said they also have trouble with heat.
Reed almost cried for joy when she heard that. Until she made these friends, she felt lonely and misunderstood.
Reed was a data analyst at Transamerica in Charlotte before going on medical disability last summer. “It just got harder and harder for me to continue working,” she said.
Having worked since she was 17, it's hard to be at home, “barely able to do a load of wash” or take care of her 13-year-old daughter. Because she doesn't look sick, she says other people view her skeptically. “I look fine, and I'm a large woman. You're automatically perceived as being fat and lazy. There's tremendous guilt and isolation,” Reed said.
The support group helps. “You can get together and make friends and say ‘I can't do it today,' and they understand,” Reed said. “We've had to create our own community because we're the only ones who understand what we're going through.”

What is chronic fatigue syndrome?
In the mid-1980s, chronic fatigue syndrome was first identified as a cluster of symptoms in clusters of patients in a few spots in the United States. Dr. Charles Lapp, then a family physician in Raleigh, identified one such outbreak among all the members of the N.C. Symphony Orchestra. Seven remained ill with chronic fatigue.
“Patients started coming to me with persistent flu-like symptoms,” said Lapp, now medical director of Hunter-Hopkins Center in Charlotte. “They would work one day and have to sleep for two. Perfectly well-adjusted people became disabled almost overnight.”
By the time Lapp notified the federal Centers for Disease Control and Prevention about his findings, the agency had heard similar stories from Lake Tahoe and Rochester, N.Y.
At first, because the illness seemed to strike middle-income, well-educated people, it got tagged with the name “Yuppie Flu.” Patients hated that because they thought it made light of their conditions. In time, researchers confirmed the syndrome was real, and it was given more respectful names – chronic fatigue syndrome, chronic fatigue and immune dysfunction syndrome, or myalgic encephalopathy.
Experts initially believed the syndrome was caused by a virus or retrovirus. But that proved wrong, and later research looked at immune system abnormalities. The most recent focus is on the central nervous system and the body's metabolic system, Lapp said.
Researchers in Spain and England have shown that certain genes in patients with CFS and fibromyalgia are turned off and on differently than those in healthy people, Lapp said. A blood test was recently patented but is not available commercially, he said.
The cause is unknown, and there's no cure.
About 70 percent of people who have chronic fatigue syndrome also have fibromyalgia, and vice versa. It's often difficult to distinguish between the two. Although fibromyalgia is not a new syndrome, it was officially defined by the American College of Rheumatology in 1990 as chronic widespread pain (at least three months duration) associated with at least 11 of 18 pressure points on the body. Like CFS, it can be extremely debilitating and interfere with basic daily activities.
Insurance coverage for chronic fatigue syndrome and fibromyalgia is sporadic, Lapp said. “In our practice, 30 percent of patients get full reimbursement, 30 percent get partial, and the rest get minimal.”
Karen Garloch

10 Reasons to Try Accupuncture

I have tried accupuncture and unfortunately it did not work for me but I know how accupunture has helped a lot of people and there are so ailments that can by remedied by accupunture so I am posting this for those interested.

Ten Reasons to Try Acupuncture

Acupuncture is a natural therapy that is a form of Chinese medication. It involves inserting hair-thin needles into specific points on the body to stimulate the body’s healing abilities. Acupuncture can be used to heal and overcome a variety of physical and mental health related problems.
Pain Relief
Acupuncture can aid in relieving pain. This is, in part, due to the fact that acupuncture increases the body’s level of endorphins, which are often referred to as “feel good” chemicals. Acupuncture also helps normalize nerve impulses because acupuncture points and the central nervous system are connected.
The Immune System
Evidence has indicated that acupuncture strengthens the body’s immune system and natural resistance. It has been shown that there is an increase in white blood cells, as well as in the level of Alpha, Beta, and Gamma Globulins after an acupuncture treatment. Alpha and Beta Globulins are thought to help white bloods cells better fight infection, while Gamma Globulins assist in the production of immune antibodies.
Drug Recovery
Acupuncture assists in the recovery of drug and alcohol addiction. It does this by helping to reduce withdrawal symptoms, decreasing cravings, relieving tension, and helping people relax. In fact, acupuncture is so successful in drug treatment recovery that many clinics throughout the United States use acupuncture as an integral component of their programs.
Musculoskeletal Disorders
Acupuncture has the ability to release muscle tension, as well as tension in the connective tissues. This allows the lymphatic, nervous, and circulatory systems to function more efficiently. For these reasons, acupuncture is helpful in both prevention and treating musculoskeletal disorders. In fact, sports figures such as Carl Lewis, Charles Barkley, and Jim McMahon are known to use acupuncture in order to improve training and performance, as well as to speed up healing and to manage pain.
Allergies
Allergies are caused by the immune system reacting to substances that are harmless to most people. Environmental factors, such as pollen, dust and chemicals are common causes of allergies. Similar, foods such as milk, wheat, and selfish can cause allergic reactions. Allergies can cause watery eyes, stuffy nose and sneezing.
They can also cause more serious problems, such as joint pain, diabetes, glaucoma, kidney problems, depression, heart palpitations and learning disorders. Through acupuncture, the body can be detoxified and the immune system can be strengthened, thereby causing the body to cease having allergic reactions.
Stress
Stress can lead to more serious health problems, such as heart disease, cancer, stroke, and respiratory problems. According to Chinese medicine, stress causes these problems when the liver energy is out of balance. Therefore, acupuncture helps but this energy back into balance, which relaxes the muscles and brings about peace of mind.
Diseases and Disorder
Acupuncture can help with more than 50 different internal medical problems. Some diseases that have been effectively treated with acupuncture include: bronchitis, asthma, diarrhea, ulcers, and hypertension. The exact acupuncture treatment varies depending on the medical condition and may be used in conjunction with other natural therapies, such as herbs and massage.
Chronic Fatigue Syndrome
Chronic Fatigue Syndrome is often brought on my depression, stress, or an infection. No matter the direct cause, patients with Chronic Fatigue Syndrome have immune system deficiencies and most have a weakness in their internal organs. Acupuncture can be used to improve the body’s immunity and, therefore, eliminate Chronic Fatigue Syndrome.
Menopause
Typical symptoms associated with menopause include night sweats, hot flashes, insomnia, mood swings, and heart palpitations. In Chinese medicine, these symptoms occur when the Yin is out of balance. Yet other symptoms of menopause can include weight gain, hypertension, indigestion, and water retention, these are caused by an imbalance in the Yang.
If these are left untreated, it results in a Qi deficiency, which causes feelings of fatigue, a dry vagina, decreases sex drive, lower back pain, cold extremities, and incontinence. Acupuncture therapy has been shown to help get the Yin and the Yang back into balance, thereby reducing the symptoms of menopause.
PMS and Menstruation
Many women experience both emotional and physical pain and discomfort before and after menstruation. Emotional difficulties can include sadness, anger outbursts, depression, and irritability. Physical pains can include pain in the lower back and the lower abdomen. Acupuncture can help bring the body back into balance and eliminate or lesson physical and social pain associated with menstruation.
Acupuncture is a form of traditional Chinese medicine that is quickly gaining acceptance in Western culture for its proven ability to treat emotional and physical problems without the side effects associated with other forms of medication.

Sing Two Songs & Call Me in the Morning

I have a habit of singing for no reason. I sing whatever comes to mind: how I am feeling at a particular moment, what I am going to do about it, etc. As you can imagine, I sing a lot about pain and fatigue and why me, but I also sing about how I am not going to let it get to me and I am not going to be a victim, although a lot of times I really am feeling sorry for myself. I just make up a tune as I go along and I even try to rhyme words. John asks me "why do you always do that?" and I answer "I am just singing the blues."

Well apparently this may be good for me. I just read an article from the May 2008 issue of O Magazine called "Sing Two Songs and Call me in the Morning" by Sari Harrar. I thought I would share this article here:

Just after she was diagnosed with lymphatic cancer, Maria Logis was possesed by a quirky desire. "Every time I prayed, a voice inside urged me to sing," says Logis, a former human resources executive with Con Edison, New York City's electric company. "I had never sung before. It was baffling."

Encouraged by her sister, Logis went looking for a singing teacher but ended up with a music therapist. Instead of asking her to study scales and belt out show tunes, the therapist encouraged her to improvise---and give voice to her deepest feelings. "I sang about being afraid of the doctors and of treatment," she says. "Lyrics about the despair, sadness, and silence of my life poured out of me. Music made it possible for me to face my fear and anguish."

Until recently, most music therapists have worked exclusively with special groups---kids with disabilities, for example, or the elderly. Early research suggests the practice may ease depression and help control blood pressure. Now a tiny, but growing, group is offering vocal therapy to all adults.

"Nothing accesses the inner world of feelings, sensations, memories, and associations as directly as music does, " says Diane Austin, adjunct associate professor of music therapy at New York University and executive director of the Music Psychotherapy Center in New York. "The voice is like a bridge from your heart to your head. Singing freely releases what's locked up in your body." A pilot study published in the British Journal of Nursing found that singing therapy could greatly reduce the anxiety and depression patients can experience following a major surgery. The effect was strong enough that the authors suggested doctors prescribe therapy before trying antidepressants.

In a session, Austin might start with deep slow breathing and then suggest that you turn each exhalation into a wordless sound. Or that you improvise a melody while free-associating words. The exercises take surprising and revealing turns---playful, silly, angry. "Your voice doesn't lie," she says. "You can have all sorts of self-knowledge, but though deep breathing and using your voice, you can get closer to what's really going on for you."

Since most of us don't have a vocal therapist in the neighborhood, Austin offers the following exercises.

-Breathe out loud: Lie on your back on the floor. Relax, breathe deeply, and as you exhale make a sound. "Just let any sound out that wants to come out," she says. "Play. Be imaginitive like a child."

-Tone: While lying down, sing a long, sustained note on a vowel sound. Take a breath and continue, allowing the pitch to change as it wants. Keep it up for about ten minutes. "This is like meditation," Austin says. Recent research suggests she may be right. A two-year study of elderly people with dementia found that singing or playing instruments in a group once a week slowed the natural rise in blood pressure associated with aging.

As for Logis, her cancer went into remission right before she was scheduled for chemotherapy. But lifting her voice transformed other aspects of her life. A year after her diagnosis, she rented and upright piano and performed songs based on her experience for friends crammed into her apartment. Everyone wept and cheered she says.

Berlin Student Raises Awareness of Fibromyalgia

I had to put this article here to applaud Brianna for what she is doing.

School projects abound, but I was intrigued by this one that Berlin resident Brianna Tulin has undertaken. It appears to have taken on a life of its own and gotten attention from a national organization.Brianna's mother has been afflicted with fibromyalgia for many years and this winter she decided to spread the word about the syndrome. She set up a display in the lobby of her school, the Solomon Schechter Day School in West Hartford, on fibromyalgia. When she and her father, Jay, asked state Sen. Donald DeFronzo if there was something the state could do he promised to introduce a bill to the legislature designating May 12 as Fibromyalgia Awareness Day. That bill is pending in the legislature, here's a link to a page where you can track its progress and Brianna said she plans on testifying at an upcoming hearing on the bill. Here she is with her father outside their home the other day.Her efforts caught the attention of the National Fibromyalgia Association. The group highlights efforts its members make to spread awareness of fibromyalgia and it has done this with Brianna. Here's a link to what they've done."I had no idea I would be noticed by anyone," Brianna said about the attention her project has received. "I was shocked but pleased."Sandy Bennett, a spokeswoman for the NFA, said she learned of Brianna's efforts because they contacted another association staffer who deals with advocacy issues. Bennett said she was particularly impressed by Brianna's youth. "She has done all of this while dealing with the challenges of growing up with a sick parent," Bennett said about Brianna in an email to me.Brianna said her mother was diagnosed with fibromyalgia in 1990 and suffers from other health problems as well. These have rendered her bedridden for the past couple of years. Brianna said the project was done for a school assignment. Part of the program at Solomon Schechter calls for students to do what is called in Hebrew a "mitzva," which Brianna said can be translated into English as either a good deed or something commanded by God.She said the project must be something that raises people's awareness about something or solicits their help dealing with a problem, like making donations. Brianna said she thinks awareness of fibromyalgia is limited and chose to do something on her mother's disease because of that. "It's pretty plain but it has everything you need to know," Brianna said about her display at school.She said many people she knows, including fellow students, knew little or nothing about the disease. "People think fibromyalgia is just some random disease that was made up," Brianna said.

Savella, new drug approved for FM

FDA OKs Fibromyalgia Drug Savella

Savella Joins Cymbalta and Lyrica as Drugs Approved for Fibromyalgia Patients

By Miranda HittiWebMD Health News

Reviewed by Louise Chang, MDJan. 15, 2009

-- The FDA has approved a new drug called Savella for the management of fibromyalgia.
Savella belongs to a class of drugs called serotonin and norepinephrine reuptake inhibitors (SNRIs), which include some antidepressants.
The drug companies behind Savella -- Forest Laboratories Inc. and Cypress Bioscience Inc. -- report that the FDA approved Savella based on two clinical trials that together included 2,084 fibromyalgia patients who took Savella or a placebo for three months or six months.
Savella trumped the placebo in the percentage of patients of who reported at least a 30% reduction in pain and also rated themselves as being "very much improved" or "much improved" in terms of their fibromyalgia, according to a joint news release from Forest Laboratories and Cypress Biosciences.
Savella was safe and generally well tolerated, according to Forest Laboratories and Cypress Biosciences. The drug companies report that nausea was the most common side effect in the clinical trials and that other commonly reported adverse reactions were constipation, hot flush, sweating, vomiting, palpitations, increased heart rate, dry mouth, and hypertension (high blood pressure).
Savella, which is expected to be available by prescription in March, is only approved for adults. It will bear the same "black box" warning as antidepressants about increased risk of suicidal thinking and behavior in children, adolescents, and young adults.
Savella will get a medication guide outlining its risks. And the FDA is requiring postmarketing studies of the pregnancy and fetal outcomes in women who take Savella while pregnant, and a clinical trial of Savella's effects on babies exposed to the drug from breastfeeding.
Other FDA-approved fibromyalgia drugs include the nerve pain drug Lyrica and the SNRI antidepressant Cymbalta. Other antidepressants may be used to treat fibromyalgia but aren't specifically approved by the FDA for that use.

Managing Fibromyalgia - Improving Relationships

Since I have been feeling horrible lately I am just going to copy an article that I just read that I found interesting. I could have written this article.

Managing Fibromyalgia - Improving Relationships

An Article by: Bruce Campbell PhD

Chronic illness changes relationships, both for the person who is ill and for others as well, creating new strains and frustrations. Sources of frustration for people with CFIDS and fibromyalgia include not feeling understood or accepted, isolation, feeling pressure to do more than is healthy, the unpredictability of symptoms, rejection and abandonment. This article describes seven coping strategies used by people in our self-help course to improve their relationships.

1) Re-Assessing Relationships

People with CFIDS and fibromyalgia often find themselves re-assessing their relationships, making deliberate decisions about who to include in their lives. This re-assessment or "relationship triage" is motivated by two aspects of chronic illness. First, illness imposes limits, which in turn force us to be selective in what we do and who we do it with. Also, illness often makes us feel more vulnerable to those who are demanding or negative. Relationships that are both unrewarding and unnecessary may be eliminated, those that are unrewarding but necessary may be simplified.

I have made my circle of friends much smaller. I have excluded people who I feel I have been having one-sided friendships with. It was difficult to let go, as I once valued their friendships a great deal, but I have decided I need to put myself first, which is a new concept to me.

I try to limit contact with hyperactive people, negative people, skeptical people, and demanding people.

I am learning to stay away from those people who add stress to my life and to spend more time with those who keep me laughing and who understand me.

Some relationships are just too costly for me, and I need to let them go. If the person is causing me a lot of stress, making no attempt to understand my illness or just taking more from the relationship than giving, I can't continue to put my previous energy into it. When the person is family, I've learned to back away as much as I can, but it may not be an option to completely cut them off.

2) Seeking Support

Being ill is difficult. Feeling understood and supportive is a balm to the soul. Students in our groups report seeking out contact with fellow patients and also valuing the support and friendship offered by family and other non-patients.

Fellow Patients

Relations with other patients are immensely helpful, because they give me a sense that I have people in my life who truly understand. This has both lessened the frustrations of relationships and reduced the frustration of being ill.

I have a dear friend who has a different chronic condition but who is someone I can share my day and feelings with. It works wonders for both of us. Getting support from people who are in the same place as you helps.

The most helpful relations with patients have been with people who have significantly recovered. They seem to be the most supportive and understanding. Others are less into self-help strategies or genuine support, more into what is the latest miracle cure.

Support from Others

I have found talking with selective friends to be very therapeutic. It makes life with chronic illness a little easier to take.

At first I knew no other people with CFS. Then I met a lot, but isolated myself from healthy people. Now I've been working on nurturing relationships with both sets. I need people I can talk to about my illness, but I also need to get outside the world of CFS as well.

I am really lucky because I have two really good sources of caring friends. First is my church, especially the Bible study group to which I belong. Second is through the business I started a year ago.

3) Practicing Assertiveness

Illness imposes limits. Assertiveness means setting safe limits for oneself, then communicating them to others.

Setting boundaries and keeping them set are big challenges for me. For years I have had ‘welcome' tattooed on my forehead, as if I were a doormat.

I often use the illness as an excuse with those who would obligate me by asking me to be on boards, give showers, serve in the community, etc. At first it was very hard to say no, because I love a challenge or a party, am capable, and like to be active and involved. I've found that some people need to be reminded several times before they stop asking, but that's OK.

When invited by friends and family members to come over or do this or that, I am honest with myself and decline such invitations if I know I am not up to the certain activity. I just give a simple explanation that ‘it might be too much for me today' or ‘I am not up to doing that at this time' and let it go at that. I have found that telling the truth is so much better on both sides than accepting the invitation out of guilt and suffering with it.

4) Educating Others Selectively

Patients are sometimes successful in educating others about their illness, but most put limits on their efforts.

When I was first ill, I tried to educate everyone about CFIDS. Over time I came to see that some relationships were more central to my life than others. I also concluded that some people might never understand. I still make efforts to educate, but I'm more selective about who I approach and I've accepted that some may never understand.

I try to help others understand my illness, but I don't force it down their throats. I try to talk openly about my illness without always focusing on it. If being open spurs further questions, then I share what I can. But I no longer waste my energy trying to educate everyone.

I'm OK with the fact that some people are very sympathetic, some people try to understand but never really get it, and that others cannot or will not understand or sympathize at all.

5) Doing Your Part

Chronic illness makes life more difficult for others as well. Family members, for example, may experience loss and feel isolated and helpless. Patients report another strategy for improving relationships is to focus on what they can do to make relationships work.

I try to be the best friend, spouse, daughter and sister I can be. I feel more secure and on equal ground when I feel I'm keeping up my side of a relationship. I can't do this with everyone, so I focus on the most healthy, valuable relationships.

I make time for my marriage. I've found that even if I'm too tired for us to do anything, if I just talk with my husband or sit next to him instead of in a separate chair, and pay attention to what he wants to say, then our relationship is much smoother and happier. He in turn is much more thoughtful of my circumstances and my needs.

I have found that identifying my part in mis-communication or a problem is very helpful.

6) Accepting Help

Patients report relations are improved when they ask for help in specific ways or allow others to set boundaries for them. Good communication can reduce fears of abandonment.

People are often thrilled when I ask for help in clear, practical ways. But I feel challenged to say what I really need without laying heavy expectations on people. My husband and children are always asking me ‘Are you sure you are up for it?' when I agree to go places. They are my protectors and it feels good. When my husband senses that I am isolating myself, he suggests doing things with me that are unstressful like ordering pizza and playing card games with him or all of us going out for a movie.

One of my biggest fears was that I would become such a burden that my husband would abandon me. At one point, he almost did. But we took it as a challenge and now communicate much more openly and honestly and have re-committed to each other.

7) Embracing Solitude

Illness often forces patients to spend much more time alone than before. Some patients see illness as providing an opportunity to develop new solitary interests.

I have really found that I enjoy having solitude. I never had time to do the things I loved the most. I was always in the fast lane, and by the time I got to do something I was far too stressed to enjoy it.

I actually enjoy spending a lot of time alone. After many years of activity and socializing, it is great to have time to pursue my intellectual interests. I like the luxury of not having to hurry. I read a lot, do simple household chores, watch TV, and work on my jewelry hobby. It is great to have the pressure to produce lifted from my shoulders.