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Fibromyalgia Community Newsletter #119
February, 2009

Editor's Corner with Mary McKennell:

Jane has been so good to carry on for me while I have been going through a series of personal mishaps, medication glitches, family crises, and job concerns the last few months. Some say that I am a magnet for crises and others say I create crises out of what happens to me. Either way I have been in a tailspin for awhile.

One of the things that occurred to me in my absence from writing here in this space was a change in medication that was a major mistake. Perhaps you can learn something from my experience.

I had been referred to a neurologist and she noticed that I had been on this one medication for a long time for restless leg syndrome. She does not like that drug because it is an old drug and there are newer drugs out to treat that. There was nothing wrong with the existing one. I let her talk me into trying something new. Pharmacy did not tell me anything about weaning off the old one or warn me about symptoms of withdrawal from it. Neither did I get any warning about how this new drug might be contraindicated with anything I was presently on.

Perhaps you can deduce from those statements above what went wrong. I went on Mr. Toad’s Wild Ride for several days. The new drug was a disaster. It was contraindicated with several of my existing medications. I had major side effect reactions to the drug. Basically I went crazy for a week, or as one of the references I looked at phrased it-I had a “brief reactive psychosis”. I couldn’t go to sleep and then when I did go to sleep I couldn’t wake up until 15 or 16 hours later. I had horrible nightmares. I was having panic attacks.

I called to talk to the neurologist to tell her that things had run amuck. I never got through to her. She kept giving me messages about changing the dosage through her nurse. She did not comprehend my messages where I was saying “I will not, I cannot, eat green eggs and ham”. In other words lady, it does not matter how you change the dosage I am not taking the medication.

The fourth phone call I received was giving me an entirely different medication. By now, my trust level was very low and I was not going to take anything she recommended until I talked to someone else and gave time for her disaster drug and my old drug to clear out of my system. So after 6 weeks I was ready to try this new one and it proved to be a very good change for a number of reasons.

I failed to follow my usual pattern when the idea of a new drug was introduced. Normally I would go to one of the “drug checker” web sites and read about the drug and do my own investigation about drug-drug interactions before I get it filled. I did not do that.

If you have a pharmacist that reviews your medication list with you then you have found a very good thing. If not, here are some websites for a do it yourself check up. I run my drugs through one of these checkers about once a year just to see if any new warnings have come up or things I should be aware of. There are three good choices below to do your own check up.

Wishing you joy in your journey!
Mary McKennell


1. Portraying the Personal Side of Pain
2. Pain Relief the Natural Way
3. Why Fatigue Accompanies Pain
4. Antidepressant Agents for the Treatment of Chronic
Pain and Depression
5. Acupuncture and myofascial-trigger therapy compared
6. Medicines Derived From Cannabis: A Review Of
Adverse Events
7. Dr. St. Amand Comments on First Report from City of
Hope Fibromyalgia Research
8. FM and ME/CFS – The Same, Related, or Different?
9. Biology and therapy of fibromyalgia: Stress, the stress
response system, and fibromyalgia
10.Autonomic Dysfunction
11.Fibromyalgia and Your Nervous System
12.Living with Invisible Illness: 5 Ways to Let Go of Hurt

Portraying the Personal Side of Pain

Just as pain is a very personal experience, so is its portrayal through creative expression. The artworks in this special Pain Treatment Topics gallery depict a broad pallet of pain conditions, created by patients who sometimes found that their artistic endeavors also lessened their suffering. Healthcare providers can learn from such works, for these express emotions, thoughts, and perspectives that patients often cannot put into words.

I found some of these pictures to be very moving. Have you made an attempt to draw a picture of your pain or to express it in some other art form? Give this a try. You may find it to be therapeutic. Can’t draw? Then use pictures from magazines or do something abstract. I think that once you start you will find that you can find a way to illustrate your thoughts and feelings in an art medium. And-gasp! You might even have fun doing it.

Pain Relief The Natural Way
Millions of people all over the world live with chronic pain. Although there are medicines that can help ease the discomfort, many more will still continue to suffer. But there are ways that we can relieve ourselves of the pain without taking any pills or medications. Some are non conventional methods that may seem foreign to most of us, but have proven to work in relieving pain.

1.) Chiropractic therapy compliments the healing process although practitioners cannot prescribe drugs or perform surgery but are trained to do standard medical procedures. Their services are even covered by some health cards. Spinal manipulation have been proven to treating simple lower back pain especially if it has been only present for a short time.

2.) Hypnosis can also relieve pain as well as treat headaches and bowel syndrome by altering brainwave patterns in the same way as other relaxation techniques.

3.) Breathing exercise by deep breathing from the diaphragm will greatly reduce stress that is associated with several chronic pains.

4.) Regular exercise prompts your body to release endorphins, which blocks the pain signals from reaching the brain. Endorphins are also known as feel good chemicals that your body produce to help alleviate depression and anxiety. Regular exercise will let you loose weight which is important form chronic pain sufferers because lighter weight will reduce the stress on your joints and improve your flexibility.

5.) Acupuncture is one of the most non conventional means of treating pain. But this practice has been around from centuries and has been proven to work numerous times already. Acupuncture helps relieve dental pain and nausea after undergoing an operation. This ancient form of treatment also helps treating cramps, myofascial pain as well as a host of other conditions.

6.) Certain foods an also help ease the pain. Although there is not enough evidence yet, foods like chicken soup and jacket potatoes make you feel better. Cherries, which contains Anthocyanins have anti inflammatory properties found in aspirins. Sugar can also reduce the perception of pain, especially in children. Soya can also help relieve osteoarthritis pain.

Why fatigue accompanies pain

April 15th, 2008 by Richard Brassaw
Why are more women, than men, diagnosed with chronic pain, chronic fatigue, and fibromyalgia? Approximately, 94% of people with chronic fatigue report muscle pain. Nearly, 75% of people reporting chronic widespread musculoskeletal pain report having fatigue. Women are the majority of patients reporting these symptoms.
Katheleen Sluka, PhD, professor Graduate Program in Physical Therapy and Rehabilitation Science, University of Irvine Roy J. and Lucille A. Carver College of Medicine, found that a protein involved in muscle pain works in conjunction with the male hormone testosterone to protect against muscle fatigue.
Sluka, using animal studies, found the differences in fatigue between males and females depends on both the presence of testosterone and the activation of ASIC3 (an acid-activated ion channel protein that is involved in musculoskeletal pain). This suggests that they are interacting somehow to protect against fatigue, which may explain some of the differences we see in chronic pain conditions that include fatigue and why it occurs more often in women.

Antidepressant Agents for the Treatment of Chronic
Pain and Depression

Depression and pain can occur together in up to 54% of patients, and can have devastating effects on health, productivity, and overall quality of life. Antidepressants of various types remain fundamental therapeutic agents for depression and anxiety disorders, and the extension of their use into chronic pain, depression with physical pain, and other medical conditions are discussed in this paper.

Acupuncture and myofascial-trigger therapy

May 14th, 2008 by Richard Brassaw
For thousands of years classic Chinese acupuncture treatment has been used to treat pain. Since its development in the 1800s myofascial trigger-point therapy has been used in the western world for pain treatment.
A recent May Clinic study surprises practitioners of both systems that they are fundamentally similar despite the differences in approach to treat pain.
Peter Dorsher, MD, Department of Physical Medicine and Rehabilitation, Mayo Clinic, Jacksonville, Florida, found in a recent study that at least 92% of common trigger points anatomically correspond with acupoints; that those used to treat pain corresponded more than 95% of the time.
Dorsher points out that myofascial pain treatment was a rediscovery of a system discovered 2,000 years before by the Chinese. Myofascial trigger-point therapy has 255 regions described by the Trigger Point Manual, whereas classic Chinese acupuncture has 361 acupoints that target specific organs or pain problems.
The study was funded by the Mayo Clinic.

Medicines Derived From Cannabis: A Review Of
Adverse Events

Researchers at the McGill University Health Centre (MUHC), McGill University and the University of British Columbia (UBC) determined that medical use of cannabinoids do not cause an increase in serious adverse events, but are associated with an increase in some non-serious adverse events.

Several drugs containing compounds derived from the cannabis plant, or cannibinoids, are available for medical purposes in Canada. As the use of cannabinoid medications increases, so do concerns about their potential to cause "adverse events," or negative side effects. Dr. Mark Ware, Dr. Stan Shapiro and PhD candidate Tongtong Wang of the Research Institute of the McGill University Health Centre and McGill University, and Dr. Jean-Paul Collet of the University of British Columbia examined the nature of these potential adverse events in a study which will be published June 16 in the Canadian Medical Association Journal (CMAJ).

The study was based on the adverse events reported in 31 separate clinical studies of cannabinoid medications conducted between 1966 and 2007. Adverse events were categorized as either serious or non-serious; with serious adverse events defined as those leading to death, hospitalization or disability.

"Overall, we found an 86% increase in the rate of non-serious adverse events among the patients treated with cannabinoids compared to the patients in the control groups," said Ware, a neurosciences researcher at the Research Institute of the MUHC and assistant professor in anesthesia at McGill's Faculty of Medicine The majority of events were mild to moderate in severity.

The majority of non-serious adverse events observed affected the nervous system, mainly dizziness and drowsiness. "Cannabinoids are used as medicines because they are neurologically active, so we expected to see some side effects such as these," said Wang, a PhD candidate in epidemiology and biostatistics at McGill University.

Cannabinoids have been shown to treat chronic pain resulting from diseases such as cancer, multiple sclerosis, arthritis and fibromyalgia, and also to stimulate appetite and relieve nausea. Physicians must weigh the possible benefits of treatment against the possible side effects in an overall attempt to improve the patient's quality of life.

"We have summarized the adverse events from these studies to help educate physicians and patients about the possible risks of medical cannabinoids," said Collet, formerly at McGill's Department of Epidemiology, and now professor at University of British Columbia, senior researcher at the Child & Family Research Institute and Director of the Centre for Applied Health Research and Evaluation at British Columbia Children's Hospital. "We cannot extend these results to smoked cannabis or recreational use. That will require further research."

Dr. St. Amand Comments on First Report from City
of Hope Fibromyalgia Research

by R. Paul St. Amand, MD

June 5, 2008 - A report of the research study from the City of Hope (Duarte, California) described new findings in some of our patients with fibromyalgia.
This very technical paper can be read on line (, but I will try to simplify it. My summary will omit some fascinating and pertinent material in its simplification.
The function of our genes is to dictate the formation of proteins throughout the body. You know these proteins as enzymes, hormones, antibodies, components of cell structures and so on. Our study examined twenty-five circulating proteins known as cytokines or chemokines. We found that several were abnormally elevated in the blood of FM patients as well as in some of their family members (with and without fibromyalgia) when compared with normal controls.
Two proteins were most prominently elevated. They are known as
• Eotaxin
• And MCP-1 (monocyte chemotactic protein-1).
When tested in tandem, the elevations correctly identified fibromyalgia in up to 50% of the patients.
But when two other less-prominently abnormal cytokines (four total) were factored into the testing, the diagnostic probability rose to somewhere between 70% - 80%.
These two additional cytokines are TNF-alpha and IFN-gamma (tumor necrosis factor alpha and Interferon-gamma).
Interestingly, eotaxin was even higher in patients treated with guaifenesin. MCP-1, on the other hand, showed the same elevated levels in treated or untreated fibromyalgics. The other two cytokines actually dropped down to normal in patients treated with guaifenesin.
Obviously, this raises the question of whether more eotaxin is needed by fibromyalgics to protect them from something else - such as inflammatory effects of other cytokines. It certainly reflects that guaifenesin has distinct effects on cytokines that have been previously unknown.
This is a very technical research paper that addressed only laboratory findings. It does not describe the feasibility of testing cytokines by an average clinical laboratory. However, the study is ongoing and will certainly produce more data and hone in on what could become mainstream testing for fibromyalgia. Such facts will surely become more relevant as results from the current genetic arm of the study are published. Genetic findings point the way for future biochemical analyses, and this paper did reinforce our stance that the disease is inherited in the vast majority of patients.
Obviously, we are closer to a solution for the complicated aberrant biochemistry and physiology that so thoroughly disrupts the life of fibromyalgics and their families. As Churchill would say, "This is not the end, but it is the beginning of the beginning." It gives credence to our protocol even though its benefits to patients were not part of this project.

FM and ME/CFS – The Same, Related, or Different?

by Karen Lee Richards*

06-23-2008 The question as to whether fibromyalgia and ME/CFS ('chronic fatigue syndrome') are the same illness, closely related illnesses, or completely different illnesses has been debated by physicians and scientists for many years.
Some feel FM and ME/CFS are different facets of the same illness, while others believe they are distinct disorders that share several common symptoms. To further complicate the situation, 70 percent of people who have been diagnosed with one are also diagnosed with the other.
A new paradigm put forth several years ago by Muhammad B. Yunus, MD, suggests that FM and ME/CFS, along with a number of other conditions like irritable bowel syndrome, migraines, and multiple chemical sensitivities, are part of a larger group he terms “Central Sensitivity Syndromes.” The uniting factor that all of these illnesses have in common is central sensitization – an exaggerated response of the central nervous system to stimuli.
Overview of FM and ME/CFS
Before enumerating their similarities and differences, let’s look at a brief overview of FM and ME/CFS.
FM – FM (Fibromyalgia) is a malfunction of the central nervous system that causes disordered pain processing, and results in pain amplification. The primary symptoms of FM are:
• Widespread chronic pain
• Extreme fatigue
• Sleep problems.
Other symptoms that may occur include: allergies, irritable bowel, irritable bladder, headaches, migraines, dizziness, numbness and tingling, sensitivity to cold or heat, depression, restless legs syndrome, chemical or environmental sensitivities, impaired balance or coordination, dry eyes and mouth, vision problems, or problems with memory, concentration and cognitive functioning.
ME/CFS – ME/CFS (Myalgic Encephalopathy or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is an illness characterized by prolonged and debilitating fatigue accompanied by a number of other symptoms, including: memory and concentration problems, recurrent sore throats, unrefreshing sleep, muscle and joint pain, and headaches.
Generally speaking, ME/CFS includes at least four of the following:
• Post-exertional malaise lasting more than 24 hours
• Non-refreshing sleep
• Short-term memory or concentration problems
• Muscle pain
• Multi-joint pain without joint swelling or redness
• Headaches of a new type, pattern or severity
• Tender cervical or axillary lymph nodes
• Sore throat.
The article continues at:

Biology and therapy of fibromyalgia. Stress, the
stress response system, and fibromyalgia

Manuel Martinez-Lavin
Stress is a state of disharmony, or threatened homeostasis. A stressor could have a psychological origin or a biological origin. Societies have become more intricate with industrialization, and modern individuals try to adapt to the new defiance by forcing their stress response system. The main component of the stress response network is the autonomic nervous system. The present article reviews current knowledge on autonomic dysfunction in fibromyalgia. Sympathetic hyperactivity has been consistently described by diverse groups of investigators. Fibromyalgia is proposed to be a sympathetically maintained neuropathic pain syndrome, and genomic data support this contention. Autonomic dysfunction may also explain other fibromyalgia features not related to pain.

Autonomic dysfunction Definition

Dysfunction of the autonomic nervous system (ANS) is known as dysautonomia. The autonomic nervous system regulates unconscious body functions, including heart rate, blood pressure, temperature regulation, gastrointestinal secretion, and metabolic and endocrine responses to stress such as the "fight or flight" syndrome. As regulating these functions involves various and multiple organ systems, dysfunctions of the autonomic nervous systems encompass various and multiple disorders.
The autonomic nervous system consists of three subsystems: the sympathetic nervous system, the parasympathetic nervous system and the enteric nervous system. The ANS regulates the activities of cardiac muscle, smooth muscle, endocrine glands, and exocrine glands. The autonomic nervous system functions involuntarily (reflexively) in an automatic manner without conscious control.
In contrast to the somatic nervous system that always acts to excite muscles groups, the autonomic nervous systems can act to excite or inhibit innervated tissue. The ANS achieves this ability to excite or inhibit activity via a dual innervation of target tissues and organs. Most target organs and tissues are innervated by neural fibers from both the parasympathetic and sympathetic systems. The systems can act to stimulate organs and tissues in opposite ways (antagonistic). For example, parasympathetic stimulation acts to decrease heart rate. In contrast, sympathetic stimulation results in increased heart rate. The systems can also act in concert to stimulate activity. The autonomic nervous system achieves this control via two divisions: the sympathetic nervous system and the parasympathetic nervous system. Dysfunctions of the autonomic nervous system are recognized by the symptoms that result from failure of the sympathetic or parasympathetic components of the ANS.
Primary dysautonomias include multiple system atrophy (MSA) and familial dysautonomia. The dysfunction can be extensive and manifest as a general autonomic failure or can be confined to a more localized reflex dysfunction.
With multiple system atrophy, a generalized autonomic failure, male patients experience urinary retention or incontinence and impotence (an inability to achieve or maintain a penile erection). Both males and females experience ataxia (lack of muscle coordination) and a dramatic decline in blood pressure when they attempt to stand (orthostatic hypotension). Symptoms similar to Parkinson's disease may develop, such as slow movement, tremors, and stiff muscles. Visual disturbances, sleep disturbances, and decreased sweating may also occur.
Persons with autonomic dysfunction who do not exhibit the classical symptoms of orthostatic hypotension may exhibit a less dramatic dysfunction termed orthostatic intolerance. These patients experience a milder fall in blood pressure when attempting to stand. However, because the patients have an increased heart rate when standing, they are described as having postural tachycardia syndrome (POTS).
Although not as prevalent in the general population as hypertension, orthostatic intolerance is the second most common disorder of blood pressure regulation and is the most prevalent autonomic dysfunction. Orthostatic hypotension and orthostatic intolerance can result in a wide array of disabilities. Common orthostatic intolerance syndromes include: hyperadrenergic orthostatic hypotension (partial dysautonomia); orthostatic tachycardia syndrome (sympathicotonic orthostatic hypotension); postural orthostatic tachycardia syndrome (mitral valve prolapse syndrome); postural tachycardia syndrome (soldier's heart); hyperadrenergic postural hypotension (vasoregulatory asthenia); sympathotonic orthostatic hypotension (neurocirculatory asthenia); hyperdynamic beta-adrenergic state (irritable heart syndrome); and idiopathic hypovolemia (orthostatic anemia).
Milder forms of autonomic dysfunction such as orthostatic intolerance affect an estimated 500,000 people in the United States. Orthostatic intolerance more frequently affects women; female-to-male ratio is at least 4:1. It is most common in people less than 35 years of age. More severe forms of dysautonomia such as multiple system atrophy often occur later in life (average age of onset 60 years) and affect men four times as often as women.

Fibromyalgia Syndrome and Your Nervous System

FMS is closely linked to a dysfunction of the autonomic nervous system. Our nervous system is made up of several components. The central nervous system consists of the brain and spine and is our body’s main control area. The peripheral nervous system connects the central nervous system to our organs and tissues, while the autonomic nervous system includes the sympathetic nervous system (which induces a "flight or fight" response in the body) and the parasympathetic nervous system (which reduces heart rate and slows down muscles in order to preserve energy).
In patients with fibromyalgia, the sympathetic nervous system functions at an abnormally high level, while the parasympathetic nervous system functions at an unusually low level; this leads to a constant "fight or flight" response. Studies have shown that this constant state of hyperactivity also leads to an increased heart rate when patients are both standing and lying down. Several studies have found that female fibromyalgia patients can have a particularly severe autonomic dysfunction.
Fibromyalgia Symptoms
Fibromyalgia leads to changes in the nervous system, such as hyperactivity and a decreased ability to sleep.
The over-activity of the autonomic system in fibromyalgia patients also leads to fatigue, a "pins and needles" feeling, irritable bowel syndrome, depression and anxiety. FMS also leads to an increased susceptibility to panic disorder and post-traumatic stress disorder.
Joint tenderness is another of the main fibromyalgia symptoms; fibromyalgia temporomandibular joint disorder (Fibromyalgia TMJ) leads to tenderness in various muscle groups, including the neck and shoulders, which are main connecting points for the sympathetic nervous system.
Fibromyalgia Treatment
Treating Fibromyalgia Syndrome can help improve a person’s overall quality of life.
Visualization helps to reduce the level of pain associated with fibromyalgia. By visualizing pain as a positive, controllable quality as opposed to a harmful, incontrollable element, the individual can rise above pain and tenderness caused by FMS instead of feeling overwhelmed by them.
Massages, such as herbalized oil massages, can also promote the relaxation of the nervous system, as they create heat and friction, which stimulate circulation and decrease the amount of chemical impurities that lead to oversensitive nervous tissue.
Maintaining a healthy diet can also decrease nervous system imbalances and can reduce sensitivity to pain. A proper fibromyalgia diet should exclude the following foods to decrease fatigue and boost energy levels: coffee, chocolate, fried foods, white sugar and flour, and tobacco.
Natural therapy for fibromyalgia is an excellent way to reduce FMS symptoms associated with the nervous system. Meditation and stretching exercises are also helpful in the treatment of fibromyalgia.
Fibromyalgia Traditional Chinese Medicine (or Fibromyalgia TCM) uses acupuncture and herbal medicines that treat the liver and blood deficiency which are believed to be at the root of FMS.

Living with Invisible Illness: 5 Ways to Let Go of Hurt

"You look so good! You can't be as bad as you say. You look perfectly healthy."
"You think you have fatigue? Try working full-time plus having four children! Then you'll know what chronic fatigue is."
"I think you're spending too much time thinking about how you feel. You need to just get out more."
"If you really wanted to get well, you'd at least try that juice drink I gave you last week. It won't hurt to try it."
And the comments go on and on.
And it hurts.
Nearly 1 in 2 Americans has a chronic illness or physical condition that impacts their daily life. The definition of chronic illness can include everything from arthritis to cancer, migraines to diabetes, and back pain to fibromyalgia. Even mental illness or eating disorders are considered invisible illnesses.
One of the biggest emotional hurdles for people who suffer from daily pain is the invisibility of it. Statistics tell us that about 96% of illness is invisible--meaning the person who suffers from the chronic condition may appear to be a healthy individual but who actually copes each day with physical pain.
If you have an invisible illness here are 5 ways let go of hurt feelings and move on to a better life:
(1) Let go of expectations. This may be a life-long process, but you will consistently find that people will always disappoint yo. No one is perfect--including you! Remember, you don't understand the difficulties that your friends are going through, whether it's a divorce, the death of a loved one, a loss job, an ill child, etc. Your illness is significant in your life. Even when people care, they still will have significant things going on in their own lives. Listen to them share about their challenges too even when you think they pale in comparison to your own.
(2) Find supportive friends. When you are sick and tired of feeling sick and tired you don't need to be around people who constantly belittle you or doubt your illness. End that relationship or distant yourself from that relative. Illness has a way of helping prioritize friendships. We don't need friends that will send us spiraling into depression. Spend your limited energies with those that mean the most to you.
(3) Find joy in your blessings. Rather than thinking about how badly you feel find ways to bring more joy into your life. Appreciate the little things. Many chronically ill people even begin to write poems to help them examine what makes them happy and where their passions lie. You may not be able to garden like you once did, but you can grow a few plotted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system for them.
(4) Use your talents and skills for things you care about. If you're no longer able to work because of your illness, you may feel like your skills are going to waste. Maybe you've always wanted to write children's books or be a business consultant. Find a place to plug in and do some volunteer or part-time work for to be able to use these skills in an area where you feel passionate. Instead of focusing on what others aren't doing or giving you, follow your dreams and give that gift to yourself. Many people find the advice of a chronic illness coach or counselor helpful. There are even some 12 step programs for chronic illness available on the internet.
(5) Encourage someone else. You personally know how hard it is to live with illness and to feel like no one understands. So take time to be vulnerable with someone else who is going through this. Whether you meet someone through an online group such as National Invisible Chronic Illness Awareness Week's message boards, or through your local support group, volunteer your time and expertise (yes, you're an expert on living with invisible illness!) and use it to make someone else's journey easier and you'll find your own is more enjoyable too. Are you frustrated that no one at your church thinks your invisible illness is real? Rather than stop going to church, find ways to educate them, such as a column in the church newsletter or brochures about National Invisible Chronic Illness Awareness Week. These say what to say/not to say to a chronically ill person.
We can't change other people, but we can educate them and give gentle advice. Then we much work on ourselves. It's a delicate balance to find how to live most successfully with chronic illness. You'll find that even when you want to change it can be difficult. It requires discipline and motivation for a better life. But you owe it to yourself and finding joy in your life despite invisible chronic pain will improve both your mental and physical health.

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