Sunday, August 10, 2008

Real Fibromyalgia -- Truth Influences Treatment?


I came across an interesting paper online about fibromyalgia patients malingering, or lying about their pain.

What is interesting is that the writer feels very strongly that fibromyalgia sufferers are not malingering or exaggerating how they really feel.

His conclusion is that it is crucial that sufferers should feel they are believed by their health care professionals and that they are genuinely interested in helping them.

The 3 types of fibromyalgia is also interesting. The writer did not discuss if the 3types need to be addressed differently, but it certainly deserves further study.

Health care practitioners who truly believe in their patients and encourage their patients to seek a well rounded approach to dealing with their fibromyalgia know how to develop a healthy relationship that provides much benefit to the sufferer.

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The linked article was written by THOMAS J. ROMANO, M.D., Ph.D.,
Rheumatologist, Wheeling, West Virginia; and Clinical Assistant Professor,
Department of Medicine, West Virginia University School of Medicine

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3 Mistakes of Fibromyalgia Treatment

Tuesday, June 10, 2008

Nutrients for Neuropathy: John A. Senneff




A client introduced me to this series of books by Dr. Senneff who is also a neuropathy sufferer. He speaks from personal experience as well as a reviewer of the scientific literature.

It may or not speak to the specific needs of fibromyalgia suffers but Dr. Senneff talks about something familiar. He is never surprised when a patient says a different doctor has said nothing is abnormal in their medical tests and all they can offer is minimal pain relief with medications. To which he says, they should always head for the door, go home and begin a "sensible program of nutrient supplementation."

He wrote Nutrients for Neuropathy specifically for people who are tired of expensive medications that don't work (but the side effects sure do). His book takes a thorough look at nutrients that help repair nerves.

I like his format. He writes as if he is speaking over coffee with a good friend. He presents the information in an understandable manner so you can put it to good use in your own life. Please take a look.



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More Fibro News The 3 Mistakes of Fibromyalgia Treatment

Saturday, May 31, 2008

Fibromyalgia & PTSD: Are They the Same?

Is PTSD really fibromyalgia? I see no reason not to consider this. Post Traumatic Stress Disorder is any kind of emotional or physical event that has lasting affects in how a person functions after the event is over. It seems as if the body takes a snap shot of the event and holds it in the posture, organs, mind, dreams, etc.

Pain, brain fog, and lack of energy are side effects of a huge wound that takes a long time to heal leaving an inflexible scar that seems almost impossible to soften.

Recent medical journals have correlated PTSD with fibromyalgia. Studies have been written on soldiers suffering from PTSD and their physical disorders. There are a number of clinical and observed findings that are taken into consideration for a diagnosis, but I don't see a need to be hung up on various symptoms when someone admits he or she is not functioning well.

It does show that there are psychological and biological memories that become wired into the nervous system. Acknowledging it so sufferers feel they are understood and taken seriously is the best way to handle it. Finding a health care practitioner that is comforable with the PTSD/fibromyalgia link is key to developing a successful professional relationship between practioner and client.

The problem I see is medical professionals who concentrate on physical health do not know how to adderss psychological health. This is the same for mental health professionals dealing with physical complaints. They say to their clients, "I cannot help you with that but I'd like to recommend another professional for you." Even though that is proper, it still feels like a brush off, as if the practitioner can't look at the whole person.

It doesn't require peforming dual roles in care, but it helps if the practitioner understands that there is no quick fix. It helps if the practitioner realizes there are multiple post traumatic factors in play. If you have read the 3 Mistakes of Fibromyalgia Treatment, you understand the unique way to address fibromyalgia.

The link between PTSD and fibromyalgia should help people feel validated that they have life experiences without judging them as good as bad. Things happen and everything affects each other. Now it's time to nurture.

I have included two related articles that provide more information. Enjoy.
Dr. Lisa
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FIBROMYALGIA AND PTSD

(Is there healing?)

© 2003 Theresa Lorraine CLICK HERE FOR WEBSITE

Experts in the field of Fibromyalgia syndrome (FMS) and Chronic Fatigue syndrome (CFS) believe that these two syndromes may be one and the same. Gulf War syndrome also overlaps with FMS/CFS. There is also a growing body of research linking Fibromyalgia and PTSD. While the cause of Fibromyalgia remains unknown, the condition often occurs following physical trauma -- such as an illness or injury -- which may act as a trigger. Peter Roy-Byrne, MD, Chief of psychiatry at Seattle's Harborview Medical Center believes that patients with Fibromyalgia should be evaluated for PTSD and PTSD patients should also be evaluated for chronic pain. "Even though the pharmacological treatment of these conditions may be similar, the behavioral and cognitive approaches to treatment may differ in patients with both," he says.

I woke up this morning with symptoms that would indicate a diagnosis of flu. My right shoulder is aching clear down into my back and rib cage, my right knee aches into the center of my soul. My lower back pops and cracks as I rise to a sitting position. That would be hard enough but I also feel "foggy"; there seems to be a layer of confusion between me and my reason and every muscle burns, objecting to the very act of climbing out of the bed. No, I'm not hung over, I don't have the flu and this is not the first time I've gotten up feeling this way. This is my morning norm. Some mornings it's worse. Today is a good day. I have Fibromyalgia and Ehlers-Danlos syndrome and I'm also 51, so there is quite a lot of arthritis showing up on my bone scan. In addition to the "physical" diagnosis I carry, I also struggle with PTSD. I feel overwhelmed most of the time; afraid to leave my house without one of my kids or my husband. Decisions and choices are becoming more and more difficult to sort through and the fact that I'm divided into "systems" and see a different doctor for each system, keeps me busy sitting in waiting rooms and telling my story over and over and over again, thus making everything seem bigger and bigger and bigger. I stumble to the bathroom, then on to the kitchen where I make up a cup of coffee. Exhausted from the effort, I'm now sitting at my computer trying to put together the basics of a chapter on "Fibromyalgia; It's Causes and Treatments”.

According to the National Fibromyalgia Association, Fibromyalgia is a "chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances". (http://www.fmaware.org/fminfo/brochure.htm) The underlying cause of Fibromyalgia (FM) is still a mystery but there is plenty of research going on in many areas in relationship to this disorder. Many researchers agree that FMS is a disorder of central processing with neuroendocrine /neurotransmitter dysregulation. In other words Fibromyalgia is a pain amplification syndrome. There are many studies to suggest that FMS patients have MANY physiological abnormalities: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function.

Fibromyalgia is seen in medical literature as far back at the early 17th century (early 1600's for those of you having a foggy day) and there are still physicians out there who don't believe in it preferring to send patients presenting with these vague, multiple symptoms to counselors and psychiatrists for their "hypochondria". This is particularly cruel to those who believe the referring doctor and spend years in therapy trying to cure a physical disorder with mental gymnastics only to find it can't be done. I've often thought, lately, how much kinder it would have been to have a counselor say to me, "Yes, your experiences in this life have broken you in ways we don't understand yet, and therefore can't fix BUT, there are ways for you to cope. Let's work on that". The trouble is, they all believed in the therapy they were prescribing and the doctors who sent me there didn't have any physical evidence with which to support a physical diagnosis. They were, as I was, doing the best they could with the information they had at the time.

The word Fibromyalgia was first coined in 1976, derived from the Latin roots "fibro" "my" "al" "gia". "fibro" means fibrous tissue, "my" means muscles, "al" means pain and "gia" means condition of, so we have "the condition of muscle and fibrous tissue pain". Recent research takes this disorder out of the muscles, however and puts it into the region of the brain and nervous system where there have been found endocrine, metabolic, immunoloregulatory irregularities thus bringing us to the conclusion that Fibromyalgia is a central processing disorder rather than a muscle disorder. It was only in 1987 that the American Medical Association (AMA) acknowledged fibromyalgia as a true illness and a potential cause of disability.

In researching for this paper it seems the phrase "there is some evidence" was the most prevalent among them all. There is no definitive cause for Fibromyalgia as yet supported by medical research. Because there is no definitive cause, there is also no definitive treatment. It seems to be up to each one of us to try everything and find something that makes life bearable.

Unless it's from a physical trauma one can remember and site as the "beginning of all this", chronic pain creeps up on a person. It's usually not something you wake up with and say to yourself, "My gosh! I hurt! I'd better see a doctor". In my own case, I began waking up with leg aches at night when I was four. My mother did take me to a doctor who diagnosed flat feet and growing pains. The pain did abate, although the orthopedic shoes I was required to wear may just have scarred me for life. Pain became a way of life for me gradually. There was always a reason for the intense pain although sometimes that reason given to me was hypochondria, and so I went from episode to episode thinking I was a bit neurotic, maybe a little delicate and had a low threshold for pain.

The exhaustion crept up on me too. There was no morning I woke up exhausted and found it was all that different from the life I'd been leading. It came in cycles causing many of my numerous counselors to toy with the idea of Bi-polar disorder (manic-depressive disease in those days) only to toss it out when they found I had no manic episodes in my past. Sometimes I was just too tired to: pay the bills, go to school, meet my committee obligations, do the dishes. I honestly thought I had a lazy streak and found I unconsciously became a person who did as much as I could to prepare for the "hard times". I never put off 'til tomorrow what could be done today, in case "tomorrow it would be too hard". I kept my homes as clean as I could, leading some to diagnose me as obsessive compulsive, but can you imagine if the house would be dirty at the beginning of a period of bone wearying exhaustion? It would be too filthy to live in by the time I finally felt better.

When I was 25, I finally told a counselor about the sexual abuse I'd experienced over a long period of time in my youth. He told me that explained the periods of exhaustion and told me I could fully recover and be a "normal" person if I would just participate in some very intense therapy. So I did. The periods of exhaustion didn't go away, in fact they got more frequent and the pain periods followed the same pattern. I truly thought that I must be very broken that I was doing all I was asked to do and more and still was not healing. It began to feel as if instead of being a "survivor", I was being victimized for a second time and as a matter of fact I'm beginning to see that I was. To be fair to the therapists I worked with though, they were doing the best they could with the information they had at the time. I began therapy for my yet as unnamed PTSD in 1976, the year the word Fibromyalgia was born and back in a time when only war veterans were thought to experience PTSD and it was called shell shock. The link between the two was years in the future. And the link between the severity of both and genetic predisposition is just now beginning to be explored.

PTSD is a relatively new diagnostic category in the history of psychology. It first appeared in 1980 in the internationally accepted authority on PTSD, the DSM (Diagnostic and Statistical Manual of the American Psychological Association), 3rd Edition (APA 1980). At that time the DSM had a limited view of what could cause PTSD, defining it as developing from an experience that anyone would find traumatic, leaving no room for individual perception or experience of an event. This definition was expanded when the DSM III was revised in 1987, and the DSM IV (APA 1994) provides even broader criteria. The currently accepted definition as presented in the DSM IV accepts that PTSD develops in response to events that are threatening to life or bodily integrity, witnessing threatening or deadly events, and hearing of violence to or the unexpected or violent death of close associates. Events that could qualify as traumatic, according to the DSM IV, include: combat, sexual and physical assault, being held hostage or imprisoned, terrorism, torture, natural and man made disasters, accidents, and receiving a diagnosis of a life threatening illness. PTSD can also develop in children who have experienced sexual molestation, even if this is not violent or life-threatening. The DSM IV adds, "The disorder may be especially severe or long lasting when the stressor is of human design (e.g. torture, rape)." (APA 1994)

A research team led by Jens Gaab, Ph.D., of the Center for Psychobiological and Psychosomatic Research at the University of Trier in Trier, Germany; and the Institute of Psychology at the University of Zürich in Switzerland are proposing that chronic fatigue syndrome may be the result of subtle alterations of a hormonal stress response system called the HPA axis. A smoothly functioning hypothalamus-pituitary-adrenal, or HPA, axis helps the body remain stable under physiological and psychological stress through the actions of three hormones. First, the brain portion called the hypothalamus secretes a hormone that stimulates the pituitary gland to secrete a second hormone. This second hormone causes the adrenal glands to create cortisol.

In a different study, Boston researchers discovered that the HPA axis in women with fibromyalgia was damaged. As a result, it does not properly regulate production of cortisol, a hormone with widespread effects throughout the body. Impairment of these neuroendocrine systems may explain the [underlying body-system malfunctions] of fibromyalgia as well as the overlap in signs and symptoms between fibromyalgia and related disorders," write Gail K. Adler, MD, PhD, and fellow Harvard Medical School researchers. The study was conducted at Brigham & Women's Hospital, affiliated with Harvard, and published in a recent issue of the American Journal of Medicine.

According to Kathleen Brady, MD, PhD of the Medical University of South Carolina, Charleston, in individuals with PTSD, the HPA axis response is dysregulated. Individuals with PTSD have low circulating levels of cortisol. In one study of motor vehicle accident victims, low cortisol levels immediately after the accident were associated with the development of PTSD and high cortisol levels were associated with the development of depression.

Martin Teicher, M.D., Ph.D. Teicher is a developmental neuropsychiatrist and director of the Developmental Biopsychiatry Research Program at McLean Hospital in Belmont, Mass. and his colleagues have held the hypothesis for some time that the psychological trauma resulting from childhood physical abuse induces a cascade of physiological effects, including changes in hormones and neurotransmitters that mediate development in vulnerable brain regions. What’s more, they have conducted a number of studies that support the hypothesis. Dr. Teicher tells us if childhood maltreatment exerts enduring negative effects on the developing brain, fundamentally altering one’s mental capacity and personality, it may be possible to compensate for these abnormalities—to succeed in spite of them—but it is doubtful that they can actually be reversed in adulthood." (http://psych.org/pnews/01-03-02/abuse.html : March 02, 2001Clinical & Research News Psychological Abuse May Cause Changes in Brain)

Alright then, we have a link between chronic fatigue syndrome, fibromyalgia and post traumatic stress syndrome. Why then does not everyone who has a traumatic experience or even a traumatic series of events develop PTSD and CFS/FMS?

According to Jon-Kar Zubieta and his team at the University of Michigan and The National Institute of Alcohol and Alcoholism, Rocksville, Maryland there is a genetic predisposition for the way we experience pain. The COMT gene exists in two forms which make copies differing by a single amino acid only either valine or methionine. People with a particularly active form of COMT were hardier, whereas people with a less active form of COMT felt pain more acutely. Those with both forms of the gene, one from each parent, experienced intermediate pain.

According to Karaston C. Koenen PhD of the National Center for PTSD and Boston University Medical Center, twin studies provide the strongest evidence thus far for genetic influences on risk for both trauma exposure and the development of PTSD. In her A Brief Introduction to Genetic Research in PTSD Dr. Koenen sites Randent et. al. (2001) who proposes that genes involved in the endophenotypes of HPA axis dysregulation, physiology of hyperarousal and acoustic startle response might influence the development of PTSD.

Roy Lubit, MD, PhD, Assistant Professor, Department of Psychiatry, Saint Vincent's Hospital of Manhattan tell us the studies of adults who were sexually or physically abused as children demonstrate significantly higher rates of PTSD (72-100%) than studies of children who were abused (21-55%). From these statistics he postulates the full impact of abuse may not be experienced until a child reaches adulthood, engages in adult relationships and responsibilities, and develops more sophisticated cognitive capabilities.

I believe fibromyalgia/chronic fatigue syndrome DOES have at least one identifiable cause. I believe it can be the outward or physical manifestation of PTSD and that the medical community, in concert with the psychological community, has inadvertently made it worse for most of us. I believe that the promise of vibrant health, if we will just relive that trauma actually made us worse. I agree with Dr. Teicher, who tells us if childhood maltreatment exerts enduring negative effects on the developing brain, fundamentally altering one’s mental capacity and personality, it may be possible to compensate for these abnormalities—to succeed in spite of them—but it is doubtful that they can actually be reversed in adulthood." I think the re-victimization of the victim by the health system engenders a more intense experience of PTSD and therefore CFS/FMS. There are many ways in which the health system re-victimizes, even today. The first is the doctor who labels one's disorders psychosomatic or hypochondria because there are no laboratory findings. I can remember the doctor looking meaningfully at my mother while he was saying, "You just need more sleep". The headaches I was having weren't because I wasn't getting enough sleep and they weren't a bid for attention. They were real and disabling and asking for help to get rid of them only got me a bit of humiliation and no help at all. This went on for years (about 45 years as a matter of fact) and is still happening with some doctors I have presently. My gastro recently indicated that he didn't believe Fibromyalgia was a "real disease" and said right out loud, "Well, you didn't really have a work up for Fibromyalgia did you?” The next round of victimization came from the counselors I saw. I went to each counselor determined to be healthy and happy and a poster child for incest survivor recovery. I did the homework. I read the books. I practiced the new skills in my daily life. I meditated, I engaged in controlled rage relief, I talk about the abuse itself; I relived it and I wrote it all down. I didn't get well. Now I had proof there was something terribly broken inside me. "They" kept telling me one could get "well". "They" insisted it was only a matter of time and effort But I didn't. In fact, as time went on, I felt worse; less in control of my life, less healthy. I had more "imaginary" illness that no one could explain and no one could fix. I got sent to "shrinks" more often. I looked harder and harder for the "answer". The harder, I looked the worse I felt about me and about life in general. Add to that I re-victimized myself when I married a man who is more into power than he is into love and you have the perfect paradigm for PTSD complex with fibromyalgia.

It's time for the approach to complex PTSD to change from one of "You can get well and be well for life", to "I am truly sorry you have been through this. You've been changed. You can't go back to who you were but you can go on to be who you are with some tools and coping skills." I had a counselor like that. I found her the year I was 49. That means for 41 years I struggled to be someone there was no way on earth I could be. Corinne helped me restructure my life so I didn't wear myself out trying to be "perfect" or at least appear that way anymore. She helped me find coping strategies for the pain and exhaustion I felt no matter how careful I was with my schedule. She reminded me weekly, that what I thought and felt was valid and that I had control over my choices. It seems silly that one would have to be reminded that thoughts and feelings were valid or that one must take care of oneself, but I was raised to believe my needs came last after everyone else's, that I wasn't very smart and that my physical anomalies were just hysteria. I'm learning to do the validation for myself. I learning to remind myself on a regular basis that I'm a real person, and that it's ok to be who I am now; that it's not necessary to be the person someone else wants me to be, even if that someone else is a therapist. I try to keep my schedule flexible enough to accommodate whatever physical needs come up and I try to be patient with my body making my choices for me. I would give the world if the medical and psychiatric world would join me in this effort. I would give the world if my doctors would just recognize that the pain and the exhaustion are real and that as a general rule medications don't make it better. Medications only make it harder to cope. I sometimes, envy the paraplegic. He is damaged and no one tries to talk him out of it. No one tells him that if he'll just meditate, think positively, write out the experience that made him a paraplegic and participate in group therapy, he'll eventually walk again. All HIS therapy is focused on helping him cope with something irreversible. He's given tools (wheelchair, disabled sticker, and medical help) in order to function. Those of us with fibromyalgia are told to walk and get rest and "oh by the way" try this new med. Those of us with PTSD are told that if we just relive the trauma often enough we'll be desensitized. And there are very few in the world who will even discuss the possibility that fibromyalgia and PTSD are so closely related as to be one and the same thing; one the physical manifestation and one the emotional. The paraplegic doesn't cope with social stigma. He can talk about his life as one wheelchair bound. Who among us can talk about being disabled by PTSD? My experience is being told that it's time for me to get over it. It's old news.

Research is only just beginning in the neurobiology of PTSD and FMS/CFS. Some day there may be a cure for us. Someday there may be a cure for paraplegia. Until there is a cure for PTSD/CFS/FMS I would like to be treated with the same dignity and respect the paraplegic receives. I, too, would like to be treated like a good person to whom something bad happened. I would like to be cheered on for my progress even though it doesn't meet the standards set for "normal" people in the world. I would like to be recognized for the steps forward I've taken and even just for the very fact that I've survived. I would no longer wish to be told that "If I just..............., I could be well" and since I'm not, I must not want to be. I would not ever like to be asked again what "payoff" I receive for being "sick". No one would ever ask a paraplegic that and yet, I'm just as disabled. It’s just that it's invisible.

An overview of the findings by Teicher and his colleagues, as well as of the implications of these findings for psychiatry, was published in the fall 2000 issue of Cerebrum. In this overview, Teicher wrote: "I hope that new understanding of childhood abuse’s impact on the brain will lead to new ideas for treatment." Actually, it has!
CLICK HERE FOR MORE ARTICLES

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Fibromyalgia, Stress and the Brain-Body Connection
Author: Michael Roth DC

Fibromyalgia was recognized by the American Medical Association as an illness and cause of disability in 1987, yet it has been a struggle for many since Hippocrates first described a similar set of symptoms in 400 BC. In the early 1900's, fibromyalgia was considered "arthritis of the muscles" and classified with other rheumatological conditions involving pain in the muscles or joints.

Stress and pain are irreversibly linked in fibromyalgia. For many people, some kind of stressful event is what initially triggers the illness. It often shows up after a serious illness, some kind of emotional or mental shock or with PTSD (Post Traumatic Stress Disorder). Many believe that stress unmasks the disorder.

Today fibromyalgia is thought to be a central nervous system disorder in which either pain-sensing nerves are excessively sensitive, or the brain is extremely sensitive to pain impulses. People with fibromyalgia are out of balance in the HPA axis ' hypothalamus-pituitary-adrenal ' which is our body's system for responding to stress with neurochemicals like adrenalin and serotonin. Pain sensation and abnormal stress response are related and people with fibromyalgia experience more pain when they are stressed.

Simply having fibromyalgia is stressful. Though fibromyalgia feels different to each person, the common denominators are painful and uncomfortable sensations throughout the body, fatigue and mental cloudiness. Not being able to accomplish things is stressful, especially when it affects your employment situation, leading to financial stress. Dealing with a chronic illness and lifestyle changes is stressful.

Adding insult to injury is the fact that you may still appear healthy to everyone else, no matter how badly you feel, so that few people understand how compounding these conditions can be on a daily basis. Anything in addition to the everyday stress load tends to tip the scales and cause the fibromyalgia symptoms to be worse.

Stress reduction is an important part of managing fibromyalgia. Here are a few ways that my help you alleviate some of the stress:

1. Good self care. Eating a nutritious diet, getting the right amount of the right kind of exercise, establishing regular sleep habits and giving yourself grace are all part of taking good care of yourself. They are important. You will feel worse, and be able to do less if you do not take care of yourself.

2. Practice body awareness. People who deal with chronic pain, as in fibromyalgia, become accustomed to ignoring their bodies; it's one way they cope with the pain. If you learn to recognize your body's cues that you are becoming tense, you can use a relaxation technique or exercise early on, before stress becomes unmanageable. At the same time, you don't want to lose that protective lack of awareness about pain. Take breaks every so often and just sit quietly and pay attention to how you feel. Learn where you feel stress first. Do you get heartburn? Do your shoulders get tight? Once you learn that, you can periodically scan to see if your body is showing tension.

3. Change the way you think. This takes practice, yet it gives you a change to respond to situations instead of reacting.

4. Keep a stress journal. This has two purposes. You can journal about stressful incidents and use the journal as a tool to help you identify situations that are stressful to you. This can help you either avoid repeating these situations or be better prepared should they be unavoidable. Journaling about a stressful event also helps you debrief and de-stress after the event.

5. Learn stress management techniques, such as visualization, meditation, and breathing. These techniques decrease the level of neurochemicals circulating in your body, and help decrease both stress and pain.

6. Chiropractic adjustments may help reduce pain and improve range of motion. Chiropractors use a wide variety of manipulative techniques and can individualize your treatment.

7. NeuroEmotional Technique (NET) focuses on releasing emotional blocks stored in the body's memory through simple chiropractic adjustments. Everyone has emotional trauma, past or present, that the body has locked into its memory, often below the realm of conscious thought. NET can isolate these events and release them from the body.

When you decrease your stress, you will probably experience less pain and fatigue from fibromyalgia. Changing your lifestyle so that you are taking care of your self can help prevent flare-ups and give you a better quality of life. Eat well, think well, and move well!



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Dr. Michael B. Roth has been a holistic chiropractor for 23 years. His goal is to transform the health care system from crisis/reactive care to a wellness model of health. Dr. Roth is a dynamic speaker on health and wellness who can motivate and transform your audience and you to bring your own health and well-being to a new level! Learn more about Dr. Roth's programs by visiting his website, www.rothwellnesscenter.com or contact drmroth@sbcglobal.net.



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More Fibro News

Thursday, May 22, 2008

Fibromyalgia: Do Away with that Absurd Word

This is the typical scenario: someone goes to the doctor with a complaint of pain and chronic fatigue. The condition is debilitating and disrupting. Blood tests and other laboratory work find nothing that requires urgent medical intervention. The person’s presentation does not fit any other disease. Fibromyalgia is the “next best diagnosis.”

This essay was not written to present the history of fibromyalgia or review the signs and symptoms but to confront the unique dilemma that has made fibromyalgia so puzzling. Why has a so called disease that is supposedly non-life threatening ruined careers, destroyed marriages, and forced people to apply for disability assistance? Are we looking for the answer with the wrong map?

Consider alternative medicine since it has grown into a huge wellness industry. Medical journals have noted that people visit more alternative health care practitioners than traditionally based medical physicians. They are even paying for this care out of pocket. A change of attitude has brought people at a crossroads. Those who address their health care questions with alternative medical practitioners are taking a different direction, blazing a new path.

These practitioners are teaching a new definition of health. More accurately, they are reviving the long ago professed understanding that health needs to be nurtured rather than “confronted” like a school yard bully. The human body is very capable of surviving and thriving under appropriate conditions. Inappropriate conditions are known as stress. The new job is to figure our how to return back to those appropriate conditions.

Fibromyalgia sufferers have been on the merry-go-round of dissatisfaction for a long time. Their concerns are ignored. They are told to get used to it. “Go see a shrink to help you cope…” It is not yet an epidemic, so why be bothered? Yet, we have another epidemic to deal with: the consequences of stress. Maybe those with fibromyalgia have a lesson to teach us. For example, stress is not good for the heart. Someone with a heart condition is told to get on the treadmill and come back later for an angioplasty. Heart disease is very apparent. Looking at the heart has become easy. A person knows right away his or her heart attack risk. People with fibromyalgia, also suffering from stress, are faced with a bigger challenge. On their own they have to search for information about treatment alternatives. Because fibromyalgia is a syndrome, someone usually has to go to multiple practitioners, each one addressing a different symptom. They become detectives on a personal search for a better understanding of their situation.

The public is aware of stress. We know it is unhealthy. Sometimes we give it lip service because we do not see effects of stress until something severe happens. Fibromyalgia is another example of the effects of stress. But, there is no early detection test for it. A machine to monitor its progression has not been invented yet.

A better approach is to look at the person who is dealing with fibromyalgia. What can we learn by exploring the person’s strengths, weaknesses, attitude, living situation, etc.? The person gets overlooked when we are fixated on identifying and naming a disease. There is too much emphasis on the disease rather than the person who has the disease. Return to the beginning. What did we start with? A person. We have a person living his or her life. All of a sudden life changes. These folks are facing a different challenge that makes it difficult to live their original life style. Their old ways of functioning became incompatible and an “overload” was created. The challenge now is to figure out what contributed to the overload. The process requires adopting a life style most often endorsed by the alternative health care practitioners who are teaching the “renewed” definition of health. Because fibromyalgia does not affect each sufferer in an identical way, I prefer to do away with the word fibromyalgia. Once again, let’s get back to the individual and focus on the challenge he or she is facing. Managing the stress overload is a better protocol than accepting a disheartening label. Disregard the name of the disease and reframe the circumstances as a challenge to seek out a better way of living. It is still an arduous task, but the attitude is that of managing with empowerment and pride rather than the outlook of immobilized victim.

The 3 Mistakes of Fibromyalgia Treatment

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P.S.
Hello readers:
As you know, Discrimination by Diagnosis:Reclaim Your Self Respect in the Midst of Medical Label Abuse is in the works. Frustration and failing health seem to go hand in hand in the U.S. and there are a number of unique cultural factors involved in this. Feel free to share your feelings here. I am working on the finishing touches and your comments will help me organize the topics I will be presenting. Thank you.


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Friday, May 16, 2008

What Do Cars & Fibromyalgia Have in Common?

I found a great article by Dr. Robert O. Young in which he talks about how we often look at problems the wrong way. He talks about driving a car. Every so often on the highway you have deal with road changes or weather. If you hit a slippery patch, you have to grab the wheel and turn to regain control. Sometimes we turn too much and make the matter worse. He compares this to standard disease treatment and admits the medical establishment over does it.

Cars and fibromyalgia have something in common: us! We are the drivers and we need to watch how our driving habits affect us.

Dr. Young also uses a crying boy example as another great metaphor. A child cries because something has upset him. From a parent's point of view it looks like the child is crying over something simple like a glass spilling and making a mess. (My son doesn't care about messes. He loves to make them, but it makes an easy example for my story). But the parent may scold the child saying, "Don't cry over that, it's not a big deal." Did we ask the child what was really the matter? The child may have seen something else that was troubling. Now the parent misses the mark and doesn't provide enough comfort while the child begins to hide his emotions so he doesn't have to feel the rejection.

In my upcoming book about medical label abuse, I want to teach the public how to avoid the negative consequences of assumptions that lead people to feel rejected and discriminated by the culture of diagnosis. People are often discriminated by a diagnosis given to them and it changes their entire health outlook.

Dr. Young knows standard medical care has lost sight of the disease process. Just like that car being driven poorly, we are all some how stuck behind the slow driver and a pile up is waiting to happen any minute. But some of us are taking the nearest off-ramp changing the course of our lives.

If you took my mini-course: The 3 Mistakes of Fibromyagia Treatment, you will have a better understanding of this system that affects how we believe we can heal. You can read Dr. Young's article here.

You can get The 3 Mistakes of Fibromyalgia Treatment here.

Tuesday, May 13, 2008

Interview with Tami Brady, "Strategies - A Chronic Fatigue Syndrome and Fibromyalgia Journey"

Hi Readers,
I ran across this book review and thought it was well written. Dr. Tami Brady shares a moving personal story. This interview by Tyler R. Tichelaar gives a great preview of the pressing problems of fibromyalgia and chronic fatigue. You can also learn more at her home page. Dr. Tami Brady

Enjoy the article.
--Dr. Lisa








Interview with Tami Brady, "Strategies - A Chronic Fatigue Syndrome and Fibromyalgia Journey"By Tyler R. Tichelaar


Tami Brady earned a BA and MA in Archeology before turning her interests to alternative medicine, largely due to her own issues with infertility and being diagnosed with Chronic Fatigue Syndrome and Fibromyalgia. Today she provides whole health therapy sessions to help people with Fibromyalgia and infertility issues. She is the author of seven books, the latest of which is "Strategies: A Chronic Fatigue Syndrome and Fibromyalgia Journey."

Tyler: Thank you for joining me today, Tami. I'm intrigued that you've written "Strategies" as a memoir. To begin, will you tell us a little bit about your own journey dealing with Chronic Fatigue Syndrome and Fibromyalgia?

Tami: Great to meet you, Tyler.

In 1996, I was readying myself for a new phase of my life. My children were all now in school and I was planning to study for my archaeology degree. That winter, I had more than the usual number of the flu and colds, which I attributed to stress: my job, readying to go to back to school, and my father-in-law's impending open-heart surgery.

That spring, I got another bout of what I thought was the flu. This one knocked me completely off my feet. I could hardly get out of bed each morning.

Unfortunately, it wasn't the flu. I spent the next year being shuffled around from one specialist to another trying to figure out what was wrong with me. By the time, I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia my health had deteriorated. I hardly slept, I was in constant pain, and my legs collapsed on a regular basis.

It took me a long time to deal with my conditions. I was angry and frustrated but probably my biggest hurdle was all the denial and self judgments. I saw my health issues as a sign that I was weak and a failure. So instead of listening to what my body was screaming to tell me, I just kept pushing myself hoping that the pain and fatigue would dissipate on its own.

Perhaps that's the most important lesson for those of us who live with Chronic Fatigue Syndrome and Fibromyalgia. We spend so much time and energy berating ourselves for what we can't do and the lives we were forced to leave behind that we forget about the gifts that we are given through this experience. Our fatigue and pain makes us choose what's really important in our lives. These symptoms force us to be more loving and kind to ourselves. If we allow them to, they can even show us a better, more content, fulfilling existence.

Tyler: Tami, is there a relation between Chronic Fatigue Syndrome and Fibromyalgia? Can a person have one without the other-does one cause the other?

Tami: The general definition of Fibromyalgia is chronic pain. One of the diagnostic tests for Fibromyalgia is the presence of pain in a majority of particular trigger points throughout the body. Actual symptoms vary from person to person including localized pain; heaviness or weakness causing mobility issues, swelling of the joints; memory and thinking impairment (fibrofog); and a myriad of other problems. Between four to eight million individuals suffer with Fibromyalgia in the United States alone. Some estimates suggest that 5% of the population actually has Fibromyalgia.

Another million people have Chronic Fatigue Syndrome. A large portion of individuals who have Chronic Fatigue Syndrome also have Fibromyalgia. The most common symptom with Chronic Fatigue Syndrome is intense fatigue, often coupled with unrecuperative sleep and chronic insomnia.

In my case, my Chronic Fatigue Syndrome symptoms often exasperate my Fibromyalgia issues and vice versa. Far too many times a string of sleepless nights has heralded a wave of back pain or intense pain in my hip that has made it impossible to get any sleep.

Tyler: Tami, why do you think it took so long for the doctors to diagnose you with Chronic Fatigue and Fibromyalgia, and how did you know they were correct when you were finally diagnosed with it?

Tami: At present, there are no definitive tests for Chronic Fatigue Syndrome or Fibromyalgia. Moreover, since many of the symptoms are shared with other conditions such as accidental poisoning, problems with the thyroid glands, Lupus, Multiple Sclerosis, and the like, it is extremely difficult to determine that someone has Chronic Fatigue Syndrome or Fibromyalgia. Essentially, a doctor has to discount every other possible physical solution. Then, after psychological evaluations are complete, they can finally look to Chronic Fatigue Syndrome and Fibromyalgia. Unfortunately, for now at least, it's just a long frustrating process.

To be honest, when I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia, I didn't believe it was a real condition. I thought that it was a made up nonsense that the doctors told people so they could ready themselves for having Multiple Sclerosis. The reason I thought this was because my aunt had recently been diagnosed with MS and her symptoms seemed a lot like mine.

It wasn't until many years later that I came to accept that I did indeed have Chronic Fatigue Syndrome and Fibromyalgia. This change of heart came mostly from reading books about these conditions and interacting with others who have the same issues. Even though some of the actual symptoms that we experienced were slightly different, the locations of pain nodules, the type of pain and fatigue, the progression and duration, and the triggering mechanisms of these experiences were fascinatingly similar.

Tyler: Why did you decide to write "Strategies"?

Tami: Strategies gradually evolved into what it is today. It started out with lists and notes that I took with me to all my doctor appointments in those early years. Later, as I started writing a personal journal, my writing became more about expressing my feelings in a safe way. Finally, I formally began to analyze my symptoms and try to find strategies to deal with them.

It was at this point that I started working on the actual text for this book. At first, I had no intention of publishing my words. I simply needed to understand my own story. I had a lot of deeply hidden emotions and insecurities that I needed to acknowledge so that they could be released.

Being so very open and honest was a pretty scary prospect. In truth, I think I was afraid of who I might find hidden underneath all the overachieving bravado that I had built up over the years. Still, each time I sat down to write, I felt another piece of a huge burden lifted from me. I began feeling content, more peaceful, and even a little joyful.

Eventually, I knew that I had to share my story with others. Not because I was in any way special but to validate the journeys of everyone who has been touched by Chronic Fatigue Syndrome and Fibromyalgia. Our symptoms and our personal paths might not be exactly the same but having these conditions impacts our lives in a way that we couldn't have imagined in our wildest dreams (or nightmares as the case might be).

Tyler: Tami, you actually are very involved in the alternative health field. Do you credit your own medical issues with your interest in alternative medicine?

Tami: Yes, very much so. I believe that the universe sometimes gently nudges us in just the right direction. I'm a little (okay a lot) stubborn, so I needed a pretty big push.

I loved being an archaeologist. I really enjoyed traveling around the countryside and hiking in the back country looking for artifacts and remnants of archaeological sites. I also liked the fact that everyone knew what an archaeologist did for a living. I never had to dread the "What do you do for a living?" question. It never failed, the moment I said I was an archaeologist, the person I was talking to would begin telling me about their favorite Discovery episode. It was a great icebreaker!

The major problem with archaeology (apart from the physical strain) was that I had to pretend a lot. I had an image to uphold which was extremely limiting. Not only did I have to fane that I was in perfect physical and mental health, I felt obligated to adhere to a specific range of beliefs and ways of behaving.

As I gradually grew to love and accept myself, I realized that I didn't have to act a certain way to be a good person. I didn't have to impress anyone but myself. My opinions counted and my personal truths were just as valid as the next person's.

This new line of thinking led to experimenting with alternative health methods such as Reiki and various traditional forms of spiritual healing, which eventually led me to whole health therapy. Right now, my practice focuses primarily on Energy Psychology (Reiki and various form of traditional spiritual healing) as relates to Fibromyalgia and infertility. My current Ph.D. research is looking to expand this therapy to include aspects of Jungian Theory (archetypes, shadow work, and dream therapy), Awareness Therapy (meditation and awareness), and Popular Self Help Psychology (journaling, self love, manifesting, and belief analysis).

Tyler: Will you tell us about the worksheets in the book, their purpose, and the best way to use them?

Tami: The worksheets at the back of the book are copies of those resources that I originally made for my own use. I have found them invaluable for keeping me organized, getting me through my worst days, and gaining some understanding about the progression of my symptoms. For ease of use, I have organized these pages into three types: strategy forms (to help keep track of various symptoms and strategies to alleviate these issues); keeping upbeat (to record inspiring quotes, affirmations, and anything else that will help on those tough days); and getting organized (to combat the effects of fibrofog and reduce the frustration of looking for important information such as types of medications, health care contacts, and doctor's appointments).

There really isn't a right or wrong way to use these forms. I have included copies of my own completed forms at the end of the book if anyone wishes to see the types of information that could be included in these charts. However, my best advice for readers, especially when using the strategy forms, is to fill out the sections as honestly as possible in order to gain some understanding of the various symptoms and what types of things work for them.

Tyler: What are some of the most prevalent symptoms a person will notice if they have Fibromyalgia?

Tami: Unfortunately, the symptoms of Fibromyalgia (such as localized pain, muscle weakness, and memory issues) are shared with a number of other conditions ranging from accidental poisoning and problems with the thyroid glands to Multiple Sclerosis and Lupus. It really isn't easy to determine if a person has Fibromyalgia. It is for this reason that most individuals with these kinds of symptoms have to endure a battery of tests and examinations before any sort of diagnosis is determined.

Tyler: Our reviewer, Paige Lovitt, mentioned that she also has Fibromyalgia, and that like yourself she was an overachiever, which seemed to exasperate the situation. Is Chronic Fatigue Syndrome and Fibromyalgia something people can create for themselves due to pushing themselves to do too much?

Tami: This is one of those things that no one seems to know about these conditions. It seems to me that the majority of individuals I talk to with Chronic Fatigue Syndrome and Fibromyalgia are extremely busy, overachievers. For a number of years, I actually believed that I had somehow caused myself to become ill.

Then, I came upon some material that looked at other conditions that are commonly associated with Chronic Fatigue Syndrome and Fibromyalgia. The ones that stuck out for me were Endometriosis, Renauld's Syndrome, and allergies. I suffer from all three of these. Suddenly, I realized that I might have actually had a predisposition to Chronic Fatigue Syndrome and Fibromyalgia. It became clear to me that even though my overachiever attitude obviously made my symptoms worse, I hadn't caused myself to become sick.

Tyler: Paige also mentioned that some people in the medical field still tell people that Chronic Fatigue Syndrome and Fibromyalgia are only in their heads. What response would you give to people skeptical about the existence of these disorders?

Tami: This is probably one of the worst parts of living with Chronic Fatigue Syndrome and Fibromyalgia. Often the symptoms of these conditions are invisible to the average person so most people don't even realize that we are sick. Therefore, when we mention we have health issues most people are shocked. The first reaction for many people is disbelief, even within the medical community.

My advice to all individuals with Chronic Fatigue and Fibromyalgia is to talk to others facing the same issues and arm yourself with knowledge. Join a discussion group or a local support group, read whatever books or articles you can find. You will soon realize that you are not alone; remember there are millions of us out there. Make use of these resources to build yourself a solid support system and above all keep looking for health care options that will fulfill your needs.

Tyler: If a person thinks he or she does have Chronic Fatigue and Fibromyalgia, how should they go about getting diagnosed with it? Should they start with their local doctor, or are there specialists or specific hospitals a person should visit for treatment and diagnosis? Where did you finally get diagnosed with it?

Tami: Most people do start with their family doctor and are then referred to various specialists as they go through the testing process. Afterwards, some individuals team up with medical professionals who specialize in Chronic Fatigue and Fibromyalgia for their care and management. I personally started the process with my family doctor who referred me to a variety of different specialists. The final specialist, who gave me my diagnosis, was a Sports Medicine professional.

The sad truth is that at present going through the process of testing and getting to the heart of your health issues can be a very frustrating experience. So my best advice to people who think they may have these conditions is to find a health care professional with whom they feel comfortable. Having someone who will really listen to you, answer your questions, and work with you is invaluable. Don't be afraid to look around for someone who fits you and your needs.

Tyler: What sorts of responses have you received so far for the book? I know you received an endorsement from Bob Rich.

Tami: I have been overwhelmed by the positive support from both the medical community and people living with Chronic Fatigue Syndrome and Fibromyalgia. I have received numerous emails from people, who like myself, pursued medical or alternative medical careers because of their own Chronic Fatigue Syndrome and Fibromyalgia experiences.

I've also had the privilege of having others share their stories with me. Some lift my heart: those who found the courage to leave a loveless marriage, left a stressful career behind, started a business, let go of grief, and found the courage to face childhood abuse. Others make my heart ache: people feeling frustrated, completely alone, and unsupported by the medical system.

Tyler: Will you explain a bit about whole health therapy? Are you an advocate of holistic health practices? I think some confusion exists about holistic medicine as being outside accepted medicine. What concerns if any, should people have about holistic medicine?

Tami: Whole health therapy is a methodology that works in conjunction with other forms of health care. In my practice, I focus on Energy Psychology (Reiki and various forms of spiritual healing) which is useful not only as relaxation and coping techniques but also as a means to enhance self healing.

I am an advocate for finding what works for each person. Some individuals will feel quite comfortable looking to complementary, alternative, and holistic health care options. Others may find it a little uncomfortable or ill suited to their personal beliefs. My best advice is to follow your intuition and do whatever works for your particular situation.

Tyler: Tami, I know this is not your first book. Will you tell us a little bit about some of the other books you have written?

Tami: "Strategies" is my seventh published book and my third title with Loving Healing Press. My first book was "The Complete Being: Finding and Loving the Real You." "The Complete Being" is a guide to the healthy development of the mental, emotional, spiritual, and physical aspects of the self. Readers are encouraged to use the included exercises to understand their genuine nature and move towards fulfilling their dreams.

My second and third titles, "Blame and Judgment" and "From Lost to Found" were books of poetry. As a way of sorting through my feelings, I write poetry. Sometimes dark, sometimes full of hope, these pieces illustrate my personal journey thus far.

My fourth book was "Regaining Control: When Love Becomes a Prison." This resource was made specifically for those suffering from dependence issues. This issue is near and dear to my heart. Due to my health issues, I've often worried about keeping my independence while accepting appropriate help. Moreover, I come from a long line of strong women who found themselves in abusive situations due to unhealthy dependence.

My fifth and sixth books are training manuals for the first and second levels of Usui Reiki Ryoho, the traditional form of Reiki. These books include full instructions and the attunement needed to undertake Reiki sessions. The final two books in this series are set to be published by this summer.

Tyler: It sounds like you will be busy for a while, but once your two more books on Reiki are published, do you have plans to write more books, and what are your professional plans in terms of your medical practices?

Tami: I will most definitely keep on writing. Writing is one of the many gifts that I uncovered while on my Chronic Fatigue Syndrome and Fibromyalgia journey. It allows me to be creative and share my life experiences with others. I actually start to feel like something's missing in my life when I'm not writing for an extended period of time.

In the meantime, I will be completing my Ph.D. research and will look to integrate my findings into my current whole health therapy sessions. Likely, this will include meditations, journaling, awareness therapy exercise in association with my current Energy Psychology sessions and the use of techniques such as dream work, shadow work, belief analysis, and manifesting.

Tyler: Thank you for joining me today, Tami. Before you go, will you tell our readers about your website and what additional information they can find about "Strategies" and your other books?

Tami: Thanks so much, Tyler. You can find out more information about me, whole health therapy, and my books on my website at http://www.tami-brady.com. My books are available at Amazon, Barnes and Nobles, and other fine retailers.

Today, Tyler R. Tichelaar of Reader Views is pleased to be joined by Tami Brady, who is here to talk about her new book, "Strategies: A Chronic Fatigue Syndrome and Fibromyalgia Journey," Loving Healing Press (2008), ISBN 9781932690484.

http://www.readerviews.com/

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