Laughing and crying, you know it's the same release. Joni Mitchell

Laughing and crying, you know it's the same release. Joni Mitchell

Saturday, April 30, 2011

Dealing With Toxicity and Chronic Inflammation

 I finally had my follow up appointment with Dr. Rothfeld at the Rothfeld Center. We went over my lab results and it was a lot to process. I'll give the hightlights:

The Good News: I don't have Lupus or any other autoimmune disease - yay! My thyroid is functioning within low normal ranges, and I'm negative for yeast and thyroid antibodies.

The Good News/Bad News: My overall cholesterol number is high, but so is my good (HDL) cholesterol, so the risk ratio is normal. My triglycerides (type of fat found in the blood) are high which suggests metabolic syndrome, an insulin management problem. Because of the metabolic syndrome, Dr. Rothfeld suggested a low starch diet which means I have to avoid all grains and starchy vegetables (ones that grow underground). As my QiGong instructor said, it's simple but not easy! Eliminating the largest category on the food pyramid is really difficult. No more oatmeal for breakfast, turkey wraps for lunch or matzoh ball soup for dinner!

Neutrophil granulocyte migrates from the blood...Image via Wikipedia
Fighting Inflammation
The Bad News: I'm depleted in many essential bodily functions and I'm fighting toxicity and chronic inflammation. High CRP levels suggest chronic inflammation, possibly from fighting chronic viruses such as Epstein Barr or chronic toxicity (indicated by high C4A levels) from heavy metals, mold or other toxins. Dr. Rothfeld suggested a website for more information called by Dr. Ritchie Shoemaker. I took a Functional Acuity Contrast Test (FACT) vision test that indicates neurotoxins are interfering with my brains ability to make certain distinctions.

Other than serotonin, all my neurotransmitters, such as norepinephrine, dopamine and GABA, are extremely low. When Dr. Rothfeld said that my brain is deranged, I wasn't sure if I should be insulted! Those "out of range" neurotransmitters put my adrenals into flight or fight mode which is highly stressful on my system. As you can see by the chart, my cortisol output is basically flat-lined compared to normal ranges which are high in the morning and drop off by night time. That makes me fatigued in the morning and too wired at night, interfering with sleep.

I've conducted more lab tests to determine the type of toxicity in my system and find out if the clotting anitbodies are still in my blood. I follow up with Dr. Rothfeld again in six weeks. In the meantime, I've started new supplements to boost my brain function:

MSM/Glucosamine (for joints and brain function)
Crave Arrest (to boost neurotransmitters)

Saturday, April 23, 2011

Where Did My Mojo Go?

CinderYella meets her Fella
The tumult of the last six months has subsided and in many ways my life has returned to "normal" (which for someone with fibro means dealing with aches and pains, flagging energy and brain fog, but that's been my new normal for a long time now). The fibro flare-ups and hot flashes have cooled off; the extreme sleep disturbances have calmed down and the depression and anxiety have abated. However, other parts of my life have not returned to normal. The creative fire has been dampened and refuses to reignite. Characters from my books used to speak to me, insisting that I put their words on paper. Stories came to me in my dreams and I was compelled to write them down upon awakening. Landscapes unrolled before me, calling me to capture them with my watercolors. Now it's all gone - no speaking, no calling, no creative compulsion. I suppose I should be grateful for the respite. The creative life can be as frustrating and depressing as it is fulfilling and inspiring.

There have been times in my life when my libido completely dried up. I could remember that I used to enjoy sex, but I could have cared less if I ever had it again. That's exactly how I feel now about my creative drive. I know I used to gain tremendous enjoyment from it, but now it doesn't matter if I ever write another story or pick up another paint brush. I just know that isn't "normal" for me. Eventually my libido bounced back and I can only hope the same will be true of my creative mojo. I've been thinking that I should get back into The Artist's Way by Julia Cameron. It really got the creative fires burning a few years back. But I can't even get up enough motivation to do that!

Sigh...if time heals all wounds, then I guess I need more time to heal all of mine.

Wednesday, April 20, 2011

Dr. David Bell Lectures on Chronic Fatigue Syndrome

Dr. David Bell at the Massachusetts
Department of Public Health's state laboratory
April 16, 2011

Dr. David S. Bell is one of the premier clinicians (retired) and researchers of chronic fatigue syndrome. He was the pediatrician in a small rural community in upstate New York during the "Lyndonville Outbreak" twenty-five years ago, and he has doggedly pursued treatment and research of CFIDS/CFS ever since. Dr. Bell was scheduled to present the latest research into XMRV, a retrovirus suspected of being linked to chronic fatigue, but he felt that the results were too preliminary and confusing. He said he was waiting for "someone smarter" than he to figure it out and had faith in the scientific community to do just that. Instead he reported on the twenty-five year follow up of his original patients in Lyndonville.

However, Dr. Bell did address XMRV during the question and answer period, so I'll present that first: One year ago in October, Dr. Judy Mikovits, Ph.D., director of research for the Whittemore Peterson Institute, published a paper linking XMRV to CFS. Dr. Bell continues to be involved in research regarding CFS even though he is retired from practice. He is currently working with Dr. Maureen Hanson at Cornell University to study Lyndonville patients in relation to XMRV. The results have not been published, but they presented the data from the research at the NIH conference in April.

Here is an excerpt from the CFIDS Association of America:
Research on XMRV in CFS continues at other institutions as well. An NIH grant was awarded in May 2010 to a group at Cornell University led by Dr. Maureen Hanson that will study patients who became ill in Lyndonville, New York in the mid-1980s as children. Dr. Hanson presented preliminary results of a pilot study at the 1st International XMRV Workshop and at a meeting of the FDA's Blood Products Advisory Committee in Dec. 2010. She found sequences of polytropic MLVs in 11 of 20 CFS patients tested, but only 1 of 10 healthy control subjects. 3 of the 11 positive results were obtained from patients who reported having recovered from CFS; the other 8 met Fukuda criteria for CFS. Dr. Hanson’s laboratory is the third independent group to report these sequences in samples from CFS patient and healthy controls, although these results have not yet been published.

"There is something going on here that has eluded detection all these years, but it's very important." ~ Dr. David Bell

The main issue with the results revolves around the "contamination theory" in which skeptics question whether or not the lab samples had been contaminated with mouse cells or if there is actually an infection in human DNA by a retrovirus that has crossed species lines. Dr. Bell called it a "daunting" subject and he has decided to wait until the "smart people figure it out." Because of the complexity of the issue he said, "We're not completely sure what we're looking for." He is convinced that something caused the illness because of what appeared to be a "cluster" even though the CDC claims that clusters don't exist. In his view, retroviruses make an ideal candidate for causing this illness. In fact, Dr. Bell started studying retroviruses in the 1990's but his research was abruptly cut off. It is known that retroviruses in animals can "recombine" and that may be what's happening in humans. If CFS is caused by a retrovirus, there are potential treatments that could improve the illness. The answers are far from a conclusion, but Dr. Bell thinks there will eventually be a resolution to the questions posed about the link between retroviruses and CFS.

Dr. Bell speaks to an attendee at his lecture
25 Year Follow-up in Chronic Fatigue Syndrome Rising Incapacity:
Dr. David S. Bell, MD, Clinical Assistant Professor, University of New York at Buffalo

The twenty-five year follow up of his original pediatric patients in Lyndonville was the meat of Dr. Bell's lecture. He called the results "worrisome" because of "rising incapacity" which means that symptoms are worsening over time. Also, it's difficult to determine who is "doing well" by coping with the illness and who is actually recovered.

History: In 1985 over 200 people, both adults and children, became ill in Lyndonville, NY, a small rural area between Buffalo and Rochester. It was not an obvious outbreak because the illness presented in different ways and was often misdiagnosed as MS or mono. Some were sick for three months with a complete recovery while others were sick for six months or longer. Dr. Bell conducted a 13-year follow up study of the children who were affected by the original outbreak. The patients fell into two groups: 80% were doing well and 20% were doing badly. The study has been quoted quite extensively and, Dr. Bell wishes he could take the study back because the results are misleading. Half of the 80% that were "doing well" were completely recovered and could stay out all night partying without post-exertional malaise or modifying their behavior the next day. The other half of the 80% "doing well" were leading normal lives but had to rest the next day after exercise or exertion. In other words they were "getting on with their lives" by coping with the symptoms of the illness.

How should recovery in CFS be defined? Is it a) absence of symptoms and return to normal levels of function or b) adaption to symptoms and abnormal levels of activity? The secondary question is: if "recovery" is adaptation and not symptom resolution, does this coping lead to confusion and false perceptions of health? Dr. Bell answered his own question with a resounding "YES!" He recalled patients who insisted they were fine even in the face of real health conditions because they had been told by so many doctors that there was nothing wrong with them. These patients stopped going to doctors or didn't tell their doctors that they have CFS because they didn't want to be told to go see a psychiatrist.

Health Identity Confusion is very common because:
  • patients look normal despite symptoms
  • the prevailing perception in society and in the medical profession is that CFS doesn't exist
  • "normal" lab tests
  • "no diagnosis" from specialty evaluations
  • no evolution into MS or cancer
 25 Year Follow-up (not same patients as 13-year follow up, but results are representative): Dr. Bell looked at three groups: a control group with no history of fatigue, a group with persistent CFS and a remitting group (functioning well but with persistent symptoms). He applied the following instruments to each group:
  • SF-36 (measures an illness' impact)
  • Symptom Severity Scale
  • Bell Ability Score
  • Activity hours
  • McGill Pain
  • Pittsburgh Sleep
  • Fisk Fatigue impact scale
Athough the remitting group characterized their health as good/very good, they had much lower scores than the control group. The group with chronic CFS had only 5 hours of upright activity a day, which was often an accumulation of 15 minute intervals of activity at a time. The control group had 15.25 hours of activity and the remitting group had 13 hours. The remitting group considered themselves "getting better" because of near normal activity levels which enabled them to go to school and to work, but they continued to have symptoms of fatigue, headaches, sleep disturbances, post-exertional malaise, cognitive issues, sore throats, etc.

Reinterpretation of the 13-year results after 25 years:

80% Doing Well
  • 1/2  with no symptoms and normal activity remained well but not as well as controls
  • 1/2 with on-going symptoms but near normal activity had steady, progressive increase in symptoms and reduction of activity
20% Continued illness
  • all disabled with increased disability
  • avoided health care

Is Oxidative Stress a Cause of CFS? Free radicals are destructive and considered a cause of aging. Patients with ME/CFS have high oxidative stress because they don't have the enzymes to cope with free radicals. The decline in Dr. Bell's patients after 25 years could be excessive oxidative stress compounded by aging. It is not known if anti-oxidants have an effect on relieving symptoms and should be intensively studied  to see if high doses of anti-oxidants get to the mitochondrial membrane.

In conclusion, if patients don't recover from CFS then they gradually get worse. Instead of hitting their prime at 40 years old, CFS patients are declining, which is worrisome. Dr. Bell's hope is that doctors will look at a wider perspective than just the "yuppie flu" or a few outbreaks.

Dr. David Bell's Books and Website:

Order Cellular Hypoxia and Neuro-immune Fatigue from Amazon or download his free e-book, Faces of CFS from his website.

Visit Dr. Bell's website and sign up for the Lyndonville News or read back-issues of the newsletter

Interesting website:  
Functional medicine is personalized medicine that deals with primary prevention and underlying causes instead of symptoms for serious chronic disease.

Dr. Bell's lecture was sponsored by The Massachusetts CFIDS/ME & FM Association and the Massachusetts Department of Public Health

Saturday, April 16, 2011

Fibromyalgia Symposium Part III: Optimal Management of Fibromyalgia

It takes a village to raise a child and it takes a team to manage fibromyalgia: primary care providers, rheumatologists, pain specialists, rehab specialists, neurologists, psychologists, social workers and more. In Part III of the symposium Dr. Natalie Boileau spoke about non-pharmacologic treatments and Dr. Goldenberg followed up with an overview of medications for fibromyalgia.

"Medications alone are not enough in this situation."
~ Dr. Don Goldenberg
Dr. Boileau answers questions after the symposium

The Four Step Method to Manage FM:

1) Exercise - this is key!
2) CBT (Cognitive Behavioral Therapy) - psychotherapy that emphasizes the importance of thinking in how we feel
3) Education
4) Medication

General FM Management: avoid excessive invasive testing; regular psychosocial support; focus on the positive; education; partake in pleasurable activities; focus on activity rather than pain; regular exercise; healthy lifestyle; take control; supportive family; set realistic goals; pace yourself; improve sleep

Non-Pharmacologic Management of Fibromyalgia: Dr. Nathalie Boileau, MD

 Dr. Boileau presented an interesting slide that outlined non-pharmacologic FM treatments with strong, moderate and weak evidence of their efficacy. That is not to say that the "weak" treatments don't work, rather there is no compelling evidence to prove that they're effective.

Non-pharmacologic FM Strategies:
Strong evidence:
  • Exercise: increased blood flow to brain improves cognitive abilities, lessens pain, improves sleep and mood
  • Cognitive Behavior Therapy: improves pain, fatigue, and mood which can be sustained for several months
  • Patient Education/self management: improves pain, fatigue, and quality of life
Modest Evidence:
  • strength training, hypnotherapy, bio-feedback, baineotherapy (medicinal bathing), Tai-chi; yoga
Weak Evidence:
  • Acupuncture, Chiropractic, Massage Therapy, Ultrasound
No Evidence:
  •  Tender point injections, Flexibility exercises
Exercise: The Cochrane Review looked at 20 of 34 random control trials where patients exercised two times a week for twenty minutes in aerobics, strength training and flexibility. Aerobic exercise improved the pain threshold, well-being and physical function. Strength training worked but not as well as aerobic exercise. Dr. Boileau warned that pain intensity goes up when first starting to exercise but then goes down as conditioning improves.

Vicious Cycle: The pain cycle is induced by lack of exercise! First there is pain in the muscle or in other words a muscle spasm, which decreases blood flow and increases lactic acid. The lactic acid is a signal to the brain to increase the muscle contraction which then in turn increases the pain. Exercise increases the blood flow which washes out the lactic acid and breaks the cycle.

One problem with FM patients is the high drop out rate due to fatigue and pain. High intensity exercise creates a high drop out rate so moderate exercise, 55-75% maximum heart rate or MHR, two to four times a week is recommended for FM. To calculate MHR, subtract one's age from 220. Start slowly and gradually increase exercises such as walking, biking or water aerobics. I do water aerobics two to three times a week and it is a life saver!!!!

Yoga and tai chi are also excellent choices. The study showcased in the news about tai chi and FM patients at Tufts University was a study of Dr. Goldenberg's group.The participants were divided into two groups: one group took a one hour tai chi class once a week for 12 weeks and the second group had wellness education and stretching. The tai chi group improved more in overall function and other FM symptoms than the other group.

Cognitive Behavioral Therapy: counseling educates patients about coping strategies for pain and mood disturbances and reduces depression. It teaches patients about realistic goal setting, relaxation techniques, and re-framing thoughts in a positive manner.

Promising New Tool: Neurostimulation An electrical current is sent to the brain's pain centers which results in pain reduction in FM with very few side effects. But more research is needed.

Complimentary medicine, such as acupuncture and chiropractic, as well as supplements  have little evidence to support their benefit. Dr. Boileau suggested trying them to see if they bring relief. If it's not helping within a month, stop the therapy/supplement.

Overview of Fibromyalgia Management : Dr. Don Goldenberg, MD
Chief of Rheumatology, Newton-Wellesley Hospital 

Pharmacological FM Therapies:
Strong evidence:
  • Antidepressants: tricyclic compounds (amitriptyline); SNRI's and NSRI's (duloxetine)
  • Pregabalin
Modest Evidence:
  • Tramadol, Gabapentin, SSRI's, Gamma hydroxybutyrate
Weak Evidence:
  • Growth hormone, SAMe, Dopamine agonists, 5-HTP
No Evidence:
  •  Opioids, corticosteroids, NSAID's, thyroid hormone, benzodiazepine and nonbenzodiazepine hypnotics, guanifenesin
Recommended: While not a cure, medications have shown to reduce pain from an eight to a four on a scale of 1-10. There is no strong evidence that SSRI's alone are helpful. Dr. Goldenberg recommended a combination of 20 mg of Prozac in the morning and 20 mg of Elavil at night, which is much better than either one alone. SNRI's, such as Cymbalta or Savella, are combination drugs that hit both serotonin and norepinephrine and help with pain and fatigue reduction, not just depression. However, they are equally important in FM patients with and without depression. Pregbalin, such as Lyrica, is an anti-sesuire medication but also helps with pain by affecting the nerve endings. These drugs are difficult to use because of side effects such as headaches, nausea, weight gain, edema and dizziness. Start slowly with a low dose and adjust as needed. Patients need to be patient in order to tolerate them.

Not Recommended: Anti-inflammatory drugs, like Advil, don't really work, but may take the edge off. Opioids can heighten pain and were not recommended. In 2008, most people were taking NSAID's, antidepressants and opioids to treat FM although there is no evidence that NSAID's or opioids actually work.

Typical outcomes in FM patients: Outcomes vary and often overlap with other conditions such as lupus, sleep apnea and chronic fatigue. 10-15% are disabled, most have some impingement on work and leisure and some FM clears up completely.

The Future of FM: increase knowledge; early diagnosis; unite multiple constituencies, such as patients, clinicians and administration; bridge specialties such as rheumatology, neurology and pain management; better understanding of pain pathways.

    Wednesday, April 13, 2011

    Fibromyalgia Symposium Part II: Mood Disturbance and FM

    Dr. Sandhu speaks with symposium attendees
    After a break and a light lunch, two of Dr. Don Goldenberg's colleagues presented information about the management of fibromyalgia. Dr. Sandhu spoke about mood disturbances and their treatment with regards to FM, and Dr. Boileau presented non-pharmacologic interventions. Then Dr. Goldenberg wrapped it up with an overview of the best management options. Although audience members filled out index cards with questions for the panel, there was no time for questions and answers - a real missed opportunity, although Drs. Boileau and Sandhu stayed afterward to speak with attendees.

    Overlap of Fibromyalgia and Mood Disturbances and the Role of Mental Health Professionals: presented by Dr. Hartej Sandu, MD, Psychiatrist

    The relationship between chronic pain and depression is common. In fact, 50% of people with chronic pain of any kind are also depressed; 80% of those with depression present with physical symptoms. There is a much greater prevalence of depression in all chronic illnesses, but especially in pain conditions like FM. The more severe the pain, the more severe the depression. 30% - 50% of FM patients experience depression and anxiety. In fact, the odds rate of mood disturbances are two times higher in FM patients compared to rheumatoid arthritis.

    Dr. Sandu emphasized that fibromyalgia is a real condition, as are mood disturbances. The two conditions interact in a way that makes it more complex for both the patients and the medical providers. He presented three theories on the relationship and treatment of chronic pain and mood disturbances:

    No. 1: Depression and stress are a by-product of chronic pain. Treatment is part of somatic (physical) medicine.

    No. 2: Somatic symptoms are a manifestation of depression and anxiety. Treatment is primarily a psychiatric problem.

    No. 3: Somatic and psychological symptoms are related but different reactions to the same stimulus such as genetic, physiologic and environmental factors. Treatment lies in the overlap of psychiatric and somatic medicine, which is where fibromyalgia lies. (Am I depressed because I'm sick or am I depressed as part of my sickness? My experience has been that the depression is physical, i.e. due to sudden drops in serotonin levels, rather than situational or psychological.)

    Dr. Sandhu presented the link between depression and pain in the processes of the brain. Sensory pain is felt in the somata sensory areas which are located on the outermost parts of the brain (that's where my brain tumor was located and thus caused pain on my right side). In addition, affective (emotional) pain is processed in several inner parts of the brain, such as the amigdala, the lymbic system (hypocampus is the memory portion of the lymbic system) and the hypothalmus (controls the autonomic nervous system). All of these areas "light up" when people are stimulated with pain, which shows that there are clearly both sensory and emotional/affective components to pain. These two areas affect one another to complete the clinical picture. However, treating depression doesn't affect the sensory areas that light up in the brain.

    Neurotransmitters such as serotonin and norepinephrine are the links to dealing with depression, espcially regarding drugs such as the SSRI's, SNRI's. Also, both neurotransmitters are crucial in the descending pain inhibitory pathway, which makes them key chemicals in dealing with both depression and fibromyalgia pain. 

    Shared Features of FM and Depression:
    • strong genetic predisposition
    • serotonin transporter gene 5-HTT
    • sleep disturbances
    • cognitive disturbances
    • history of childhood abuse or stress
    • catastrophizing - the tendency to have a negative approach when anticipating the future which leads to a state of perceived helplessness. (I have to admit I can be guilty of this!) This has real significance in compounding the difficulties in both conditions. Treating depression does not decrease pain, but reducing catastrophizing does!
    Studies show that patients with major depression have increased activity in the affective pain centers of the brain similar to that of fibromyalgia. Also, anticipation of pain or a sense of helplessness (catastrophising) causes the same stimulation in the affective regions of the brain. In major depression, patients have less of a capacity to regulate and decrease sensory pain.

    Subgroups of FM Patients:

    Group 1: Psychological Factors Neutral
    • low depression and anxiety
    • not very tender
    • low catastrophizing
    • moderate control over pain

    Group 2: Psychological Factors Worsening Symptoms
    • high depression and anxiety
    • tender
    • very high catastrophizing
    • no control over pain

    Group 3: Psychological Factors Improving Symptoms
    • low depression and anxiety
    • extremely tender
    • very low catastrophizing
    • high control over pain

    It's fruitless to figure out what came first because mood disorders and pain work in unison. The symptoms are real and debilitating. Health care professionals need to work out a treatment approach to address the entire package in a wholistic fashion. Mental health providers should be part of the FM treatment team.


    Sunday, April 10, 2011

    Fibromyalgia Symposium Part I: Dr. Don L. Goldenberg

    Dr. Goldenberg's new ebook:

    The Evolution of Understanding Fibromyalgia: 
    Dr. Don L. Goldenberg, MD
    Chief of Rheumatology
    Newton-Wellesley Hospital

    While there wasn't much new territory covered, it was an interesting refresher course for me and a good deal of helpful information for my friend who was recently diagnosed with fibromyalgia. Here are some highlights of the Fibromyalgia Symposium hosted by the Arthritis Foundation New England Region and Dr. Don Goldenberg, Chief of Rheumatology at Newton-Wellesley Hospital:

    Most interesting quote: "Do not expect to get cured, but expect to get better." Dr. Don Goldenberg

    Objective "Proof" of FM: Yes, Virginia, Fibromyalgia DOES exist! On functional MRI's, pain receptive areas of the brain light up more in FM patients showing higher intensity to pain stimulus than a person without FM. Imaging technology is the wave of the future for pain research.

    Portrait of Alfred Nobel (1833-1896) by Gösta ...Image via Wikipedia
    New Genetic Discovery: The S/S genotype of 5-HTT, the serotonin transporter gene which regulates pain and mood, is more common in people with FM. This genotype also increases the susceptibility to depression after stressful events. Its presence in some FM patients suggest altered serotonin metabolism in at least a subgroup of people with fibromyalgia.

    Historical Factoid: Alfred Nobel, scientist and founder of the Nobel Prize, had paralyzing fatigue with rheumatic pains - in other words, fibromyalgia! Nobel said, "I am more seriously ill than my doctors think" to which Dr. Goldenberg replied, "He knows what he's talking about."

    All in the Family: If you have fibromyalgia, it is 8.5 times more likely that fibromyalgia runs in your family. My aunt and two female cousins on my paternal grandmother's side also have fibromyalgia.

    "Pain Thermostat" set too high: Dr. Goldenberg stressed that fibromyalgia is not a specific disease but a condition like hypertension which should be viewed on a spectrum. In Fibromyalgia patients the "pain thermostat" or "pain volume" is set too high creating a heightened pain response. On the scale between "no pain" on one end, "mild pain" in the middle and "chronic/severe pain" on the other end, FM patients fall on the extreme end of the pain spectrum.

    Most interesting website: Recommended by Dr. Goldenberg, was developed by Lilly, a pharmaceutical company, but provides helpful information about fibromyalgia rather than promoting their products.

    Most Interesting Headline: In 2009 three drugs were finally approved by the FDA for treatment of fibromyalgia. The headline in the New York Times read: Drug Approved - IS DISEASE REAL? Dr. Goldenberg's comment to the audience of fibromyalgia patients was, "You guys still have to put up with that."

    New e-book: Dr. Goldenberg assured us that we didn't have to take notes because all of his slides are covered in his new 400 page e-book, FIBROMYALGIA: THE FINAL CHAPTER which is available on Amazon for $9.99. The Kindle App is free to download and can be used to view the book on Kindle, i-pad/i-phone or any Mac or PC. So, if you weren't able to attend the symposium, you can still pick Dr. Goldenberg's brain through his e-book.

    New Research Project 2011-2012: Dr. Goldenberg has received a grant from Pfizer to find out if early intervention can prevent severe fibromyalgia symptoms in the long-term. Dr. Goldenberg encourages primary care physicians to diagnose fibromyalgia earlier which means less tests, less medications, less specialists and hopefully less long-term suffering.

    Overview of Dr. Goldenberg's Presentation:
    Chronic widespread pain affects 5-15% of the population. Fibromyalgia, a subset of that group, affects 3-5% of the population around the world. There is no structural basis for fibromyalgia as there is in arthritis or spinal injuries. Fibromyalgia is the most common cause of "hurting all over." FM is not arthritis which is articular pain, both inflammatory (rheumatoid) and non-inflammatory (osteoarthritis). Fibromyalgia is non-articular pain which is soft tissue pain. FM is not considered classically as a "disease" but a functional illness in which there is a dysfunction in the body.

    The peak age of onset of FM is between the ages of 35-60 and affects more women than men. However, FM affects all ages and genders and the rate of FM is the same in adolescents as in adults.

    Without lab tests to make a diagnosis, FM is diagnosed through symptoms such as widespread pain for more than three months, fatigue, irritability and cognition impairments. The three areas of diagnosis are: 1) no other systematic disease such as lupus or arthritis 2) chronic widespread pain and 3) tender points or trigger points. While the standard diagnosis used to be pain in 11 out of 18 trigger points, that system was too subjective and not used properly by doctors. The American College of Rheumatology Classification Criteria of Fibromyalgia now includes the Widespread Pain Index and Symptom Severity Scale which takes into account more than just the tender points such as fatigue, morning stiffness, numbness and tingling, headaches, irritable bowel, anxiety and depression.

    Dr. Goldenberg said that Lyme Disease is a big problem "in this neck of the woods" (pun intended) and felt that chronic Lyme is probably fibromyalgia or chronic fatigue.

    The most common scenario for the onset of FM is that a patient was totally healthy then suddenly got fibromyalgia. It can also be present since childhood or be the result of a specific event. It is more common in women than men but that could be a bias on the part of practitioners who are not diagnosing FM in men. However, not only do women have lower tolerance to pain than men (this is true across species as well) but chronic widespread pain occurs 2X more in women than men.

    Precipitating factors: There is a genetic component to FM. In fact, it is 8X more common in families. Triggers of FM include the flu or a virus, a motor vehicle accident, stress, childhood abuse or some combination of the above.

    Pathophysiology: FM is disordered pain processing, which is due to imbalances in hormones, the autonomic nervous system and the endocrine system. "Stressors" that aggrevate FM include injury, osteoarthritis, infection, PMS, psychological stress, steroid withdrawal and hormonal alteration such as hypothyroid. Menopause does not seem to change the severity of the symptoms. FM is diffuse hyperalgesia, heightened pain response and/or allodynia, pain from normally painless stimuli such as noise. FM patients have 4 to 5X greater pain response than normal individuals. Neural hormones central in stress reaction (fight or flight) which release cortisol are abnormal in FM. However, there is no "treatment" for this with medicaitons.

    The set point for stress is higher with FM and can be affected by genetics, gender, another disease, environmental causes, and/or negative life experiences. The higher the set point/the higher the stress, the more pain is experienced. Hopefully that stress point can be reset and brought down.

    Non-restorative sleep: FM patients experience Alpha Wave intrusion in which there is no Delta Wave, or restorative, sleep. When the sleep of normal patients was interrupted with noise they began to experience the pain and fatigue present in FM.

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    Tuesday, April 5, 2011

    R & R (& R) in St. Thomas

    View from our deck at Secret Harbor
    painted en plein air by moi
    I got plenty of Rest and Relaxation on my vacation to St. Thomas with my gal pals. The third "R" is for Recovery from the last several months of fibro flare-ups, blood clots in my lungs, and hot flashes. However, it could also stand for Restore, Recuperate, Revitalize or Rum (the raspberry flavored rum was de-lish). A big shout-out to the husbands for taking care of the home front so that we had no responsibilities but ourselves. As three moms we took care of each other and were sensitive to each others' needs - to the point that my two friends argued all week about who would carry the heavy beach bag!

    Secret Harbor (on the East End of St. Thomas) upgraded us to a first floor beachfront room, which was the best part of the trip. We could literally walk off our deck onto the beach and go to sleep every night with the sound of the surf. I spent several mornings painting en plein air before the other two ladies woke up. My friend told me that naps were mandatory in St. Thomas, so I took full advantage of that. One day I napped in a hammock strung between two palm trees on the beach with the warm tropical breeze in my hair, the sun on my skin and the sound of the surf lulling me to sleep. Not too shabby!

    Trunk Bay on St. JohnImage via Wikipedia

    We took a ferry to St. John and spent a day on Trunk Bay Beach. It's part of the Virgin Islands National Park, as is 60% of the island, so it was gorgeous and undeveloped. The snorkeling was great and we saw many colors of coral and tropical fish along the marked snorkel trail. Some of the highlights were large spotlight parrot fish chomping on coral (we could actually hear them), a yellow trumpet fish, several trunk fish and a jelly fish.

    On Friday we didn't miss missing a snow storm back home that caused a two-hour school delay! Friday night we went to Sabbath services at the historic synagogue in Charlotte Amalie, The Hebrew Congregation of St. Thomas, so I could say kaddish (mourner's prayer) for my sister's and mother's yartzeit (anniversary of passing). Established by Sephardic Jews in 1796 it's the third oldest synagogue in the Western Hemisphere and very beautiful. The sand floor either symbolizes the biblical Exodus of the Jews in the desert or was once used to muffle the prayers of Murrano Jews who were forced to convert during the Spanish Inquisition but practiced Judaism in secret.

    Of course, no girls' trip would be complete without shopping, which we had plenty of time to do without our husbands or kids to distract us. I bought jewelry made of Larimar, a stone only mined in the Caribbean and a beautiful blue-green color. Every time I wear it I'll be reminded of the breath-taking turquoise sea surrounding the islands.

    I took so many pics that I thought a slide show would be the best way to go. Enjoy!