Wednesday, September 23, 2009

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.

Monday, September 21, 2009

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

Mehmet Oz
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.

Friday, September 18, 2009

Sick & Tired of Being Sick & Tired

So here I am having another FM flare-up. Once again the weather is a contributing factor I'm sure.
This past weekend I went to a baby shower for Susanna (Jennifer's Stepdaughter) and had a very nice time. It was great to see everyone, including, Jennifer & Payton. I knew that this would wear on me because of the drive to Gastonia and just the fact of being somewhere for that long a period of time.
This whole week has been torturous for me and yesterday was the worst day of all. I literally could not move and got into one of my "why me" moments which I do experience every once in a while. Yes I try to think positive but sometime the pain does overpower that and you can't think of anything else. I actually cried myself to sleep last night. Yes even positive people have bad days too. I am human but I have decided not to let it stop me or take over my life.
I woke up today feeling pretty much the same. The old me would have stayed in bed all day, believe me I really wanted to do that today, but I had plans. My friends Brenda & Beth took me to lunch for my birthday and we had a great time. After that I even went and got my Pandora Teapot charm that I have been wanting for a long time with some money that my godmother sent me.
I refuse to let this thing win! Today is Payton's 3rd birthday and I can't believe how fast she is growing. We will be going out to Jennifer's tomorrow to celebrate. I will be there- no matter how bad I feel. I have to live my life and enjoy every minute of it. I know there will be times when I will have to cancel on someone, but I am going to try my best to pace myself, listen to my body, do what I can while I can. I do need to rest though, and I plan to do that starting Monday.
Once again- another confusing blog by "me"

Wednesday, September 16, 2009

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 (

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

* Dr. Charles Lapp, MD
Hunter Hopkins Medical Center
Charlotte, North Carolina
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.

Friday, September 11, 2009


I know I am not the only one who has ever just wanted to "get away." I'm pretty sure everyone has experienced this.
I tend to get overwhelmed at times and want to escape, just for a while. Not really a Calgon type of thing, but to just go somewhere by myself, away from everyone, with no contact, just my myself. I have been feeling like that for the last few days. No specific reason, but it is definitely not the first time.
In the past, whenever I would get like this, I would just tell everyone, that I wanted to be alone and not to worry and I would book myself a room in the finest hotels in Charlotte (Yes- I did this more than once) and just basically chill. Nothing special about the room. Maybe the fact that it was different or that I could enjoy room service, or that I didn't have to think about anything at all, at least not until check out time.
Some may say, referencing my previous post, that I did not want to face reality. That's fair to say, but like I said before I am realistic and I am not trying to avoid responsibility-- I just needed some "me" time. Yes it is an escape, but it was also a way to renew myself, and take that much needed break that I deserved. I never abandoned any responsibilities when I did this, I did however feel refreshed the next day.
Is this selfish? I don't think so, for I believe that we need to take care of ourselves before we can take care of anyone else. I have always been there for everyone and I love it, but sometimes I need a break.
I would love to do this now but of course it is financially impossible and I do realize that it is a waste of money when there are so many other ways to escape. Maybe not for 24 hours, but I have found such comfort in the beauty of nature.
My perfect escape would be to sit on a deserted beach, under a palm tree with a good book, but I don't really need to go that far. Every time I look through our big windows out at our backyard and see the beauty of the trees, and enjoy the company of the birds (& squirrels too), I couldn't ask for more. We had our backyard declared an National Wildlife Habitat because we enjoy taking care of our little friends and provide them with food & water & shelter, so believe me, our visitors are plentiful.
I know....Going off course again....
Some of my other escapes are photography & gardening-Very therapeutic for me.
There are so many ways to escape, even if its just for a while. Everyone has different methods & activities that help them. For me, being one with nature is what truly brings me peace.