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FMS Community FMS COMMUNITY NEWSLETTER #95
FMS COMMUNITY NEWSLETTER # 95
FMS COMMUNITY NEWSLETTER # 95
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August 15, 2007
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Editor: Mary McKennell

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EDITOR?S CORNER:

A little craziness once in awhile prevents permanent brain damage. Humor empowers; it lifts us above our feelings of despair. Humor is one of our major coping devices. Humor may not solve all of our problems, but while we?re laughing, we may discover a solution. It offers a way out before we reach total desperation. Humor creates an alternative to pain. It provides us with the capacity to recuperate and repair. Humor keeps us in balance and keeps mind and body in harmony. Humor helps us to ?reframe? our problems.

You say that your laugh button is broken? It is possible to make yourself laugh. Give it a try-just do your laughing sounds-something like ?heh, heh? or ?ha ha?, whatever your choice is. You will find that after just a few seconds of ?artificial laughter?, you can take yourself into a true laughing state. Another method that is guaranteed to work is the ?hoo laugh?. Simply start making the sounds of a chimpanzee??Hoo, Hoo? and you will find yourself in a major state of the giggles. I caution you to not be extremely vigorous in this version if you have asthma as it can bring on an asthma attack. I speak from experience on this latter one. I have found it extremely useful, done in moderation, when I am stuck in traffic to keep me from getting uptight. You can do the physical motions of imitating the chimp if you really want to get into this. I suppose it might entertain my fellow drivers if I were to go with the hand motions while sitting in my car, but I do have some dignity to maintain. I learned the ?hoo laugh? in a workshop on how to prevent burnout. It was quite hilarious to see this roomful of mental health professionals acting like a bunch of chimpanzees.

Kurt Vonnegut said ?Laughter and tears are both responses to frustration and exhaustion. I, myself prefer to laugh since there is less cleaning up to do afterward.? 15 good laughs per day provide the minimum daily requirement of Vitamin H (for humor). There is a verse in the Bible that says, ?A merry heart does good like a medicine; but a broken spirit dries up the bones.? (Proverbs 17:22).

You know how everyone is always telling us that to make ourselves feel better, we need to exercise? And we just roll our eyes and think ?yeah, right?. Well here is an exercise that even the most feeble person can do-LAUGH!

Laughter exercises the cardiovascular system. It releases endorphins (nature?s uppers). Laughter stimulates practically all of thelarge internal organs. It will improve posture and appearance. It relaxes muscles and drains tension. Laughter releases opiates (natural painkillers) into the bloodstream. It is a great eorobic exercise. 20 seconds of hearty laughter or guffawing equals 3 minutes on a rowing machine. I will take the laughter over the rowing machine any day!

Laughter is to the soul what exercise is to the body. Make humor a habit.

Laughter will lengthen your life. It will add life to your days. Laughter uplifts and unifies. Generates growth. Heightens health. Tickles your funnybone. Enriches, energizes and empowers! Relaxes and rejuvenates your mind, body and spirit.

Until next time-keep laughing!

Mary

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Reduced Dopamine Activity in Fibromyalgia
In a October 3, 2006 issue of the Journal of Pain, an article titled Reduced Presynaptic Dopamine Activity in Fibromyalgia Syndrome Demonstrated With Positron Emission Tomography: A Pilot Study revealed that researchers at Louisiana State University Health Sciences Center-Shreveport found that fibromyalgia involves a "dysregulation of dopaminergic neurotransmission." They evaluated 6 female FMS patients and 8 similarly-aged females without FMS by PET scan (positron emission tomograph) with 6-[(18)F]fluoro-L-DOPA as a tracer. They found reductions in dopamine uptake in several areas of the brain, which indicated disruption of dopamine activity "wherein dopamine plays a putative role in natural analgesia." The article concluded:

An association between FMS and reduced dopamine metabolism within the pain neuromatrix provides important insights into the pathophysiology of this mysterious disorder http://fibroresearch.blogspotcom/

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Pain and the Emergency Department

How are patients with chronic pain disorders treated in the Emergency Department?

Alan Witkower, Ed.D.,is a Psychologist and the Assistant Director, Outpatient Pain Service, Associate in Psychology, Department of Psychiatry, Massachusetts General Hospital, and Instructor in Psychology, Harvard Medical School

My knowledge of the management of pain in the Emergency Department, with the exception of what I have read on the topic, is based on the anecdotal reports from my patients. I treat many patients with intractable pain who are being managed with chronic opioid therapy. Many of these patients will require an occasional Emergency Department visit. Here is an example of a not-uncommon situation.

A patient, who happens to be a minister, has chronic back pain managed with opioid pain medications, and told this story. He had a back spasm on a weekend, likely related to the fact that he recently did a lot of airline travel. He is prone to spasms and his primary care doctor was not available, so his understanding of what to do was to go to his local emergency department. He had a long wait and then spoke with a triage nurse. Initially he thought she was sympathetic, but later he felt she believed his complaint was trivial. When he met with the physician he was asked why his problem couldn?t wait until Monday. The patient explained he was worried that something more seriously wrong was causing the increased pain. He told the physician what medication he had been taking and described what he had tried to do to mitigate the pain. He said his pain was 9/10 instead of his usual 6/10. Unfortunately, (although I counsel patients to always do this) he had not brought any documentation with him. The patient reports that he was given a ?cursory? examination and was told he could be given a muscle relaxant. When the patient explained that he might respond better to a temporary increase in his opioid pain medication, he was dismissed with the impression that he was viewed as a ?drug-seeker?.

My experience is that the patients who have chronic headache or chronic low back pain and seek emergency care are more likely to be dismissed than patients with other chronic medical and pain disorders. My experience has taught me that weekends are the worst time for patients presenting to the ED with a pain exacerbation. I have read that there are socio-economic and racial biases, which may increase the chance of poor treatment, but in general my patients are white and middle class. While not everyone remembers to do this, I suggest that they bring their pain contract, medicine bottles, and a list of their medications and contact information for their physician, whenever they need to go to an emergency department.

http://www.painedu.org/roundtable.asp?roundtableNumber=11


Cognitive Dysfunction in Fibromyalgia and Chronic Fatigue Syndrome: New Trends and Future Directions.
Curr Rheumatol Rep. 2006 Dec;8(6):425-429.
Glass JM.
University of Michigan, Institute for Social Research and Department of Psychiatry, 426 Thompson Street, Room 5256, Ann Arbor, MI 48106-1248, USA.

Fibromyalgia (FM) and chronic fatigue syndrome (CFS) patients often have memory and cognitive complaints. Objective cognitive testing demonstrates long-term and working memory impairments. In addition, CFS patients have slow information-processing, and FM patients have impaired control of attention, perhaps due to chronic pain. Neuroimaging studies demonstrate cerebral abnormalities and a pattern of increased neural recruitment during cognitive tasks.

Future work should focus on the specific neurocognitive systems involved in cognitive dysfunction in each syndrome.

Costochondritis (Tietze?s syndrome)
Published by JonMikel, M.D. February 28th, 2006 in Fast Facts

I?ve been asked ?and consulted- about ?rare chest pain? in several times. I could notice that people is always worried about any kind of chest pain because the fear of suffer a heart attack or a pulmonary problem. Chest pain is one of the most common symptoms that require medical attention. You ?as physician- should always exclude this topics (cardiac and pulmonary) in the first place. You should keep in mind that there is a disease called costochondritis (Tietze?s syndrome) once you ruled out the main fear conditions (pulmonary and cardiac).

Costochondritis is an inflammation of the costo-sternal joint (rib-sternum) or it could be an inflammation between the costo-chondral joint (rib-rib cartilage). The group mainly affected is that woman over 40s.

Etiology (causes): Direct injury to the chest, viral infections (cold / flu), idiopathic (the cause cannot be found).

Its clinical manifestations: Pain, tenderness in those joints I already mention earlier. This pain and/or tenderness get worse when you touch the involved site or move in a certain direction.
The diagnosis it?s mainly a clinical one and the physician should always exclude a heart attack and other important things.

The gold-standard of treatment is NSAIDs (non-steroid anti-inflammatory drugs like aspirin, diclofenac, naproxen, ibuprofen, acetaminophen, etc.) for one or two weeks (this disease usually lasts for this period of time). Some patients respond well to putting a local heating pad.

You have to remember that when you have chest pain, you have to look for a health care provider immediately to exclude other serious conditions.

http://www.unboundedmedicine.com/2006/02/28/costochondritis-tietzes-syndrome/

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Invisible Illness - You cannot see it, but you should believe it. Lydia Houghton

Invisible illnesses are just as debilitating as other more visible illnesses and disabilities, possibly more so with the lack of understanding and compassion because the person looks completely normal. If someone gets out of a parked car in a disabled parking spot and walks away, they are immediately judged that they are parked there illegally. There is no consideration that they may have a disability that is not visibly apparent. Some invisible illnesses do not have as much recognition as others. If someone tells you they have cancer, you may not have been able to see they were ill, but do not think ?It?s all in their head? or ?They don?t look sick? and discount their ill feelings, like so many of those suffering with less well known illnesses receive as a response. People are always telling me that I look great because I do not look sick, but I am actually quite ill and it is just as difficult for me to hear this as it is for people to understand that I am sick.

I have suffered, largely in silence for ten years since being diagnosed with fibromyalgia in my early twenties. I write for the first time about my personal struggle and hope to bring some understanding with May 12th International Fibromyalgia Awareness Day to this and all other invisible illnesses including Chronic Fatigue Syndrome, Lupus, Chronic Pain, Migrane headaches, Mental Illness, Multiple Chemical Sensitivies, just to name a few. There are unique challenges to each of these illnesses, but most share the perception of many around us who feel that because we look normal, we are not sick.

I am not an activist for this illness, not having been very outspoken about it in the past. In fact many people outside my close family and friends reading this may be surprised to even find out. I am often hesitant to tell people I have this condition, afraid of their reaction, and have often left it unsaid in the past due to a lack of understanding. I am trying to live my life as close to normal as possible, although this is quite difficult much of the time. I write this from personal experience, a testament to those friends that have stuck by me and even to those I have lost because of this illness, trying to give some insight into how difficult living with this really is.

Since I do not look sick and my illness is not well recognized, it means various things to people from ?it?s all in her head? to ?she?s lazy?. Anyone who knows me well enough though, knows it is the illness rather than else as I would much rather be out having dinner with friends instead of having to cancel at the last minute because I feel too unwell or with my strong work ethic, having to call in sick yet again. There is a large guilt factor that comes with any illness when you have to say ?No? either in advance or at the last minute and unfortunately there is a large demand on us by others which we have to learn quickly to adapt to when ill and hope they will understand.

There is pain with fibromyalgia. A lot of pain and believe me, it exists. It is a wandering, aching, throbbing and occasionally stabbing pain that affects the entire body often all at once. That is my description, although others may have a slight variation because that?s one of the problems with this illness. The symptoms vary from person to person in their similarity and severity and are subjective so there is no objective way to measure the pain or any other symptom at this time. I have been denied disability insurance claims multiple times over the years because of this. No one can see it, so it does not exist. This article continues at: http://www.americanchronicle.com/articles/viewArticle.asp?articleID=26692

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Experimental Drug May Fight Migraine

(HealthDay News) - A new drug to rescue migraine patients who aren't helped by standard medications shows promise, early findings suggest.

Doctors caution that the newly released findings, from an ongoing research project funded by a drug company, aren't the final word on the experimental medication, called MK-0974. But the initial results provide some reason for hope, said the study's co-author, Dr. Alan Rapoport, a neurologist at the University of California at Los Angeles.

At issue are the estimated 28 million Americans who suffer from migraine headaches. Doctors successfully treat many of them with ordinary painkillers and other approaches such as biofeedback; others receive newer drugs known as triptans that relieve swelling in the brain.

But for some migraine patients, the pain is inescapable no matter what drug they take. Certain patients can't take triptans because they constrict blood vessels -- a no-no for those with heart conditions.

Unlike triptans, MK-0974 is part of a new class of drugs known as calcitonin gene-related peptide (CGRP) receptor antagonists. These agents block a brain chemical that helps send pain signals.

The researchers were scheduled to release the findings of the phase II study Thursday at the annual meeting of the American Headache Society in Chicago.

Drugs typically go through three phases of testing, with the second phase devoted to figuring out the most effective dosage level. A phase III trial -- designed to actually tell doctors how well the drug actually works -- is now in progress for MK-0974.

In the new research funded by Merck, the manufacturer of the drug, 68 percent of those who took a 300 mg. dose reported pain relief two hours later. That rate was almost identical to the 70 percent of people who took a triptan called rizatriptan. Of those who took a placebo, 46 percent reported relief.

After 24 hours, almost 40 percent of those who took the new drug reported being free of pain, compared to 18 percent of those who took the triptan and 11 percent of those who took the placebo.

"It looks like it's going to work as well as a good triptan, and possibly even better, over a 24-hour period, possibly having fewer side effects and not constricting blood vessels," Rapoport said.

The study reported little about side effects, but they did appear to be minor, he added.

"The typical triptan side effects we all worry about are pressure and pain in the chest, tightness in the throat, tingling all over, and we didn't see that with this study. That's pretty impressive," Rapoport said.

Dr. Ellen Drexler, director of the Headache Center at Maimonides Medical Center in New York City called the new drug "quite promising," but she cautioned that "many things are tested, and not everything comes to market."

Dr. Seymour Diamond, executive chairman of the National Headache Foundation, also called the study "encouraging," but he also cautioned against getting too excited at an early stage.

More information

Learn more about coping with the pain of migraine from the American Academy of Family Physicians.

http://www.medicinenet.com/script/main/art.asp?articlekey=81648

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LEGISLATION PENDING TO LIMIT COMPOUNDING PHARMACIES

A small but powerful group of senators is considering
legislation that would severely restrict and possibly deny
your access to critical compounded medications.

If this legislation passes, federal regulators, not your
doctor, will decide what medicines you can take.

The so-called Safe Drug Compounding Act of 2007 would, among other things:
**Threaten the availability of many critical, commonly
compounded medications that many patients rely on,
such as bioidentical hormones for women, hospice care
treatments for the terminally ill and customized medicines for children.
**Allow the federal government to determine when
compounded medicines are needed - a decision that has
always been and should always be made by doctors.
**Restrict the compounded medications your doctor
can prescribe even if he or she determines you need them.

What can you do?
Check the International Academy of Compounding Pharmacists website:

http://wwwiacprx.org/site/PageServer?pagename=P2C2

Write your elected representatives in Congress. You can use this easy to use tool to write your members of Congress. Exact site:

http://www.iacprx.org/site/PageServer?pagename=P2C2001secKennedyLeg

Courtesy of
More drugs hobble restless legs syndrome

Rotigotine, a investigational dopamine agonist, is being studied for treatment of restless legs syndrome.
By: Kelly Dowhower Karpa, Ph.D., R.Ph.
Drug Topics

A leading theory regarding the pathophysiology of primary restless legs syndrome (RLS) suggests that abnormalities of dopaminergic function may be involved. Consistent with this thinking, dopamine receptor agonists are often used in therapeutic management of RLS. In
May 2005, ropinirole (Requip; GlaxoSmith-Kline) became the first drug approved by the Food & Drug Administration for RLS, followed by pramipexole (Mirapex, Boehringer Ingelheim) in November 2006. RLS, a sensory disorder, causes an irresistible urge to move the legs. Up to 10% of American adults may be affected.

Another investigational dopamine agonist, rotigotine-delivered via a transdermal patch-has been studied for both RLS and Parkinson's disease and, as Neupro (Schwarz Pharma), was just approved for parkinson's. "The patch releases the drug continuously, with no drop in drug levels during early morning hours, so rotigotine should have less of a 'wearing-off effect' in the morning compared with other dopamine agonists," said Jack Chen, Pharm.D., associate professor in
the movement disorders clinic at Loma Linda School of Medicine and Pharmacy in Southern California. This would prevent a recurrence of symptoms in the morning, a phenomenon sometimes seen with current
dopaminergic therapies.

According to product labeling for dopamine agonists, hypotension may occur-even resulting in syncope. Dopamine agonists have also been
associated with compulsive behaviors. But, as Chen noted, "they are not dose-related and they are clearly a class effect," as compulsions have occurred with both pramipexole and ropinirole.

New-generation dopamine receptor agonists like ropinirole and pramipexole target receptors located within brain regions that control motivation, emotion, and reward behaviors. In at least a subset of patients, stimulation of these receptors can prompt
pleasure-seeking behaviors. Because of this, experts are now recommending that all patients with RLS be screened by physicians for compulsive behaviors prior to therapy with dopamine agonists. Family and friends of patients should report all negative behaviors to the
patient's physician, suggested Maja Tippmann-Peikert, M.D., a neurologist at the Mayo Clinic in Rochester, Minn., and lead author of an article in the Jan. 23 issue of Neurology on this subject.

Although the precise mechanism by which it acts in RLS management is unknown, gabapentin is used off label for treating RLS. In several small clinical studies in which gabapentin was studied in patients with RLS, the antiepileptic drug improved sleep quality and sleep
latency and reduced leg movements during sleep. In fact, in several of the studies, gabapentin was just as effective as dopamine-acting drugs.

"Gabapentin might be used in RLS management when there is a simultaneous neuropathic pain component. Additionally, gabapentin might be added if patients are not getting adequate relief from a dopaminergic drug," said Chen.

Capitalizing on the benefits of gabapentin, Xenoport Inc. and GlaxoSmithKline have partnered to develop and commercialize a unique prodrug of gabapentin, known at this point only by the chemical name XP13512. This new drug reportedly has improved bioavailability compared with gabapentin.

Gabapentin is absorbed in the upper portion of the small intestine by a transporter that is easily saturated. This causes absorption of gabapentin to be dose dependent and to vary widely between patients.
Rapid clearance of the drug also necessitates dosing three or more times per day to maintain therapeutic levels.

In contrast, XP13512 was designed to be absorbed throughout the length of the intestines, and when XP13512 is delivered via a sustained-release formulation, extended exposure to the drug enhances
colonic absorption.
Although clearly the pharmacokinetic properties differ between gabapentin and XP13512, Chen cautioned that "it is too soon to tell whether XP13512 will offer clinical advantages over gabapentin" for RLS management.

THE AUTHOR is a clinical writer based in the Philadelphia area.

Source: http://www.drugtopics.com/drugtopics/article/articleDetail.jsp?id=42970
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Abnormal Pain Memory Helps To Explain Fibromyalgia
Science Daily ? The symptoms of fibromyalgia may be the result of a central nervous system that "remembers" pain sensations for an abnormally long time, according to research presented at the American College of Rheumatology Annual Scientific Meeting Oct. 29 -- Nov. 2 in Philadelphia, Pennsylvania.

Fibromyalgia, sometimes called fibrositis, is associated with widespread pain, stiffness and fatigue. People with fibromyalgia are found to have multiple tender points in specific body areas. The painful disorder affects about two percent of the U.S. population.

Researchers at the University of Florida applied heat stimuli to the hands of healthy controls and fibromyalgia patients. In contrast to normal controls, fibromyalgia patients experienced a great amount of cumulative pain from these stimulations, indicating abnormalities in spinal cord pain processing. Furthermore, the fibromyalgia patients experienced residual pain when the stimuli were applied at intervals at which the healthy controls were not affected. Normally, pain sensations quickly subside after a single heat stimulus, but will accumulate with repetitions if they occur frequently enough. This "pain memory" appears to linger for an abnormally long period of time in fibromyalgia patients.

The researchers also found that the residual pain experienced by fibromyalgia patients was widespread and not limited to a single area of the body.

"Because the effect of the first experimental stimulus does not rapidly decay in fibromyalgia patients, the effect of subsequent stimuli adds to the first, and so on, resulting in ever increasing pain sensations," said lead investigator Roland Staud, MD. "Our findings provide evidence for abnormal central nervous system mechanism of pain in fibromyalgia patients and have significant implications for future therapies, which need to target these abnormal central pain mechanisms."

The American College of Rheumatology is the professional organization for rheumatologists and health professionals who share a dedication to healing, preventing disability and curing arthritis and related rheumatic and musculoskeletal diseases. For more information on the ACR's annual meeting, see http://www.rheumatology.org

http://www.sciencedaily.com/releases/2000/10/001030082926.htm

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You're picky about the car you drive. You're picky about what you wear. You're picky about what you put in your mouth. You also need to be pickier about what you think. What we think is so important. It really does make a difference about our recovery and well-being.
http://fmscommunity.org
Learn about filing for disability in the U.S. Find advocates and support groups dealing with disability claims and more.  FMS Community's Disability Resource Page



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