May/June 2009
Hello to everyone!
I’ve seen a strange creature in the sky- it’s called the sun! I know for many of us, the rapidly warming weather brings some relief, at least until it gets so hot that the heat intolerance kicks in. I hope that those of you that can get out and about and enjoy the beautiful weather and the gorgeous nature we have in Lane County are doing so.
As you might have noticed from the date, this newsletter is being changed to a bi-monthly newsletter. In this way I’m hoping I’ll be able to resume regular publication. I have been requested by several to post the newsletters and group handouts on the website and I will be doing that as well. Our website is at http://www.lanecountycfsfibro.synthasite.com
Our meeting in June will be on the third Saturday of the month- June 20th- due to personal obligations. Other than that, everything is unchanged. We will be back on schedule in July.
Wishing everyone good health,
Sara Stewart
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From the Fibromyalgia Research Blog (http://fibroresearch.blogspot.com/) : More evidence that fibromyalgia causes objective damage to the body:
In their study findings, titled Decreased Gray Matter Volumes in the Cingulo-Frontal Cortex and the Amygdala in Patients With Fibromyalgia, researchers at the University Hospital Münster (Germany) present the results of their investigation into the gray matter of fibromyalgia patients. Because previous studies supported the assertion that fibromyalgia involves central pain augmentation, they aimed to find out "whether structural changes in areas of the pain system are additional preconditions for the central sensitization in fibromyalgia." To do so, they performed MRI's and a neuroimaging technique called voxel based morphometry on 14 fibromyalgia patients and 14 healthy controls. They scanned and analyzed the brains of their subjects, finding that there were "[r]egional differences of the segmented and normalized gray matter volumes in brain areas of the pain system between both groups." They analyzed the "correlation of disease-related factors with gray matter volumes." The researchers found that there was a decrease in gray matter volume in the prefrontal cortex, the amygdala, and the anterior cingulate cortex (ACC) of fibromyalgia patients.
Our results suggest that structural changes in the pain system are associated
with fibromyalgia. As disease factors do not correlate with reduced gray matter
volume in areas of the cingulo-frontal cortex and the amygdala in patients, one
possible interpretation is that volume reductions might be a precondition for
central sensitization in fibromyalgia.
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From the “25 Random Things about CFS”
Access this list online at www.cfids.org/cfidslink/2009/040109.pdf
Don’t be fooled by the name. CFS is more than just being tired at the end of a busy day or week. The impact of the illness has been shown in research studies to be equal to that of cancer, COPD and end-stage AIDS.
In addition to severe fatigue that’s not relieved by rest, the 8 “official” symptoms of CFS are unrefreshing sleep, muscle pain, joint pain, headache, sore throat, swollen lymph nodes, cognitive impairment (trouble thinking clearly) and postexertional relapse. You have to have 4 of these 8 symptoms for six months or more to meet the research definition for CFS. There are many other symptoms that are common to CFS. You can find them on our website at www.cfids.org/about-cfids/symptoms.asp.
As many as 4 million people in the United States have CFS. Chances are you know one or more of them. They often don’t look sick when they’re out in public, and when they’re not out in public, they’re probably at home recovering from their last trip into the world.
Women are more likely to get CFS than men, and adults are more likely to get it than kids. But make nomistake, it affects people of all ages, races and socioeconomic status. It occurs around the world in urban, metropolitan and rural areas. We still don’t have a complete answer as to why.
While there is no simple diagnostic test, CFS can be diagnosed and treated. It takes some persistence on the part of the patient and the clinician, because other causes have to be ruled out, but it’s quite possible to do. If you get diagnosed and your doctor tells you, “I think you have CFS and that means there’s nothing I can do for you,” it’s time to find another doctor.
Managing the symptoms of CFS—usually beginning with treating sleep problems and pain—requires partnership with a health care professional. It takes some trial and error to find the combination of medications, supportive therapies and lifestyle adjustments to improve function and quality of life.
The most profound and often best way to distinguish CFS from other conditions with similar symptoms is what’s known as “postexertional relapse” or “postexertional malaise.” This refers to a return of all symptoms after even minimal physical or mental exertion. Helping a child with homework, making a trip to the post office, preparing a simple dinner for the family are all things that can send CFS patients back to bed for hours, days or even weeks. This is often a huge contrast to their pre-illness capacity for activity.
If you haven’t done so already, I highly recommend you read Laura Hillenbrand’s moving personal account of CFS that was published in the New Yorker on July 7, 2003, “A Sudden Illness.” We won’t run afoul of copyright laws by posting it here, but it’s pretty easy to find online using any web-wide search engine.
One of the worst aspects of CFS doesn’t show up on any list of symptoms or reports of research findings. It’s the isolation that’s a consequence of having a chronic illness that no one fully understands yet. Having to alter plans for the future, adjust your aspirations and set vastly different expectations is a constant challenge to patients and their family members.
There are nearly 5,000 articles in the peer-reviewed medical literature about CFS. Every body system studied has revealed subtle abnormalities, although not every defect is present in every patient. As CFS science advances, critical insight is likely to emerge. It reminds me of a point in the history of MS in the 1970s, when it was called “hysterical paralysis,” just before MRI technology detected demyelination of the spinal cord. If you want a quick synopsis of the 10 most important research findings about CFS, read Harvard Medical School expert Dr. Anthony Komaroff’s summary at www.cfids.org/about/10-discoveries.pdf. You might recognize Dr. Komaroff’s name; in addition to other distinctions, he’s a regular contributing editor to Newsweek.
If you don’t have any idea what it feels like to have CFS, think of the worst flu you’ve ever had. Think about feeling that bad every day. Every day for a month. Every month for a year and so on. The average duration of illness is 10 years, but recovery is tough to define and most people report lifelong limitations of some degree.
CFS is definitely not the same as depression. Sometimes they occur together, but they are quite different even though some of the symptoms overlap. In CFS, levels of the hormone cortisol are typically lower than normal; in depression they are higher. When you have CFS, you want desperately to get back to the activities of your life. Depressed patients often withdraw from their lives, even if they push themselves to appear normal.
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The Lane County Chronic Fatigue Syndrome and Fibromyalgia Support Group is a non-profit, non-partisan educational, support, and advocacy group for patients who have CFIDS and/or fibromyalgia. We are members of both the CFIDS Association of America and the National Fibromyalgia Association. We do not have 501c3 status at this time and donations are not tax deductable. This support group will meet every 4th Saturday from 3:30-5 at the Eugene Public Library. The group will meet in the Singer Room if possible but this is subject to availability. We do not charge membership fees or anything else for this group; however, donations to help with costs are always appreciated. Donations can be sent to the address listed below.
You have received this because you have shown interest in the support group. If you no longer wish to receive updates or information, please email lanecountycfsfibro@yahoo.com and put “unsubscribe” in the subject line.
Lane County Chronic Fatigue Syndrome and Fibromyalgia Support Group
3092 Delta Pines Drive
Eugene, OR 97408
(541) 341-1355
lanecountycfsfibro@yahoo.com
