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I found this article by Rueters very interesting. In the early days of my own onset of FMS, I had many doctors trying to send me to the “head specialists.” Because I fought them (I knew my head was not making up the pain), I was given lots of medications. Now my medical problems seem to have become reactions to my meds. Seems one just can’t win!

A form of ‘mind-body’ therapy that focuses on the role of emotions in physical pain may offer some relief to people with fibromyalgia, a small clinical trial suggests.

The study, of 45 women with fibromyalgia, found that those who learned a technique called “affective self-awareness” were more likely to show a significant reduction in their pain over six months. Overall, 46 percent of the women had a 30-percent or greater reduction in their pain severity, as measured by a standard pain-rating scale.

Fibromyalgia is a syndrome marked by widespread pain — including discomfort at specific “tender points” in the body — along with symptoms such as fatigue, irritable bowel and sleep problems. It is estimated to affect up to 5 million U.S. adults, most commonly middle-aged women.

The precise cause of fibromyalgia is unknown — there are no physical signs, such as inflammation and tissue damage in the painful area — but some researchers believe the disorder involves problems in how the brain processes pain signals.

Standard treatments include painkillers, antidepressants, cognitive- behavioral therapy and exercise therapy. However, many people with fibromyalgia find that their symptoms — pain, in particular — persist despite treatment.

Part of that, according to the researchers on the new study, may be because standard treatments do not specifically address the role psychological stress and emotions can play in triggering people’s pain.

That is not to say that the pain people with fibromyalgia feel is “all in their head,” stressed Dr. Howard Schubiner, of St. John Health/ Providence Hospital and Medical Centers in Southfield, Michigan.

“The pain is very real,” Schubiner said in an interview. But, he explained, pain and emotions are “connected in the brain,” and emotional factors may act to trigger “learned nerve pathways” that give rise to pain.

Past studies have found that compared with people without fibromyalgia, those with the disorder have higher rates of stressful life events, such as childhood abuse, marital problems and high levels of job stress. There is also evidence that they are relatively less aware of their own emotions and more reluctant to express their feelings, particularly anger.

For the new study, published in the Journal of General Internal Medicine, Schubiner and his colleagues tested the effects of affective self-awareness — a technique Schubiner developed and uses in treating certain chronic-pain conditions — on fibromyalgia.

They randomly assigned 45 women with the condition to either undergo the therapy or go on a wait-list for treatment, serving as a control group. Women in the treatment group each had a one-on-one consultation, then attended three group meetings to learn the affective self-awareness techniques so that they could carry them out on their own.

The therapy involves an educational component where patients learn about the emotion-pain connection. They learn specific techniques — including mindfulness meditation and “expressive” writing — for recognizing and dealing with the emotions that may be contributing to their pain. Patients are also encouraged to get back to any exercise or other activities that they have been avoiding due to pain.

Schubiner’s team found that six months later, 46 percent of the treatment group had at least a 30-percent reduction in their pain ratings compared with scores at the outset. And 21 percent had a 50-percent or greater reduction.

None of the women in the control group had a comparable improvement.

The study is only the first clinical trial to test affective self-awareness for fibromyalgia, and it had a number of limitations, including its small size. In addition, the control group received no active therapy to serve as a comparison.

That is important because it is possible for patients to benefit from simply receiving attention from a healthcare provider, or being part of small-group sessions with other people suffering from the same condition, for example.

Schubiner also acknowledged that this general “model” for understanding and addressing fibromyalgia pain is controversial.

He said that he and his colleagues have applied for funding to conduct a larger clinical trial comparing affective self-awareness with standard cognitive-behavioral therapy.

Affective self-awareness and cognitive-behavioral therapy have similarities, according to Schubiner. Both, for example, try to show patients that they have the power to improve their own health.

A key difference, Schubiner said, is that affective self-awareness asks people to “directly engage” the emotions that may be helping to drive their symptoms.

Another difference is that, right now, only a small number of healthcare providers practice affective self-awareness, according to Schubiner.

Some components of the technique, such as teachings in mindfulness meditation, are more widely available. But whether those practices in isolation would help fibromyalgia patients’ pain is not clear.

Author: Reuters

Source: Journal of General Internal Medicine, online

June 8, 2010.Copyright: Reuters 2010

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Though I’ve had FMS for 30 years, there is always something new to learn. I hope this article from the American Pain Foundation is of interest.

Fibromyalgia: Five Things You Need to Know

by Dr. Clauw serves as Director of the Chronic Pain and Fatigue Research Center at UM

 For people living with fibromyalgia, the pain is very real.  The chronic, widespread pain and tenderness is persistent and debilitating and can impact a person’s life.  Some fibromyalgia patients may also experience other symptoms, which can prevent them from sleeping well, performing everyday tasks and enjoying life to its fullest.

More than five million Americans are affected by fibromyalgia, but the condition can affect people differently, and many health professionals are still learning how to diagnose and treat the condition.  Patients can face misdiagnoses and often learn to cope with the pain for a long time.  For some patients, it can take up to five years to receive a diagnosis. But there is hope.

Clinical understanding of fibromyalgia, its origins and treatment options, has improved in recent years. It is now thought that fibromyalgia is related to changes in the central nervous system that cause the brain to process pain signals abnormally, increasing sensitivity to pain—or put another way—the “volume control” for pain is turned up, so even a hug or handshake can be painful for someone with fibromyalgia.

If you suffer from the chronic widespread pain of fibromyalgia, you can get answers, manage symptoms and find support with some basic knowledge and the right tools.

Five things you need to know about fibromyalgia

1. Pain isn’t the only sign. Chronic, widespread pain that lasts for at least three months is a classic sign of fibromyalgia. You may wake up with stiff muscles or find that you are fatigued or having trouble remembering things. Fibromyalgia can also coexist with other health conditions, such as arthritis, chronic fatigue syndrome and mood or sleep disorders.

2. Diagnosis may be challenging. Clinicians must rely on your symptoms and medical history to make a diagnosis, since there is no lab test or x-ray to confirm the disorder.  A healthcare provider may ask you to react to specific “tender points” on your body, as defined by the American College of Rheumatology (ACR) diagnostic criteria. The ACR guidelines state that pain at 11 out of 18 tender points may indicate fibromyalgia. “Undiagnosed fibromyalgia can be debilitating for patients,” said Daniel Clauw, MD, director of the Chronic Pain and Fatigue Research Center at the University of Michigan. “In addition to the ACR guidelines, additional tools are in development to help facilitate the diagnosis of fibromyalgia and capture the full range of symptoms that often accompany the pain, including physical functioning, sleep and overall well-being.”

3. Fibromyalgia isn’t just a woman’s disease—men get it too. The large majority of those diagnosed with fibromyalgia are women, but some believe this may be due in part to men underreporting their symptoms. “Men have been taught since childhood to shake it off,” said Bob Hall, founder of the website www.menwithfibro.com. In his eight years running the site, Hall said he has seen men succumb to gender roles and try to ignore their discomfort. “Men aren’t taught to show pain,” said Hall. “But eventually they reach a point where it doesn’t shake off, and they have to do something. That’s what usually triggers them to go to the doctor.”

4. Be persistent about getting help. Many people with fibromyalgia have encountered skeptics—co-workers who may not understand why you have trouble getting out of bed, family members who may not appreciate why you’re so tired and healthcare providers who may not have much experience diagnosing the disorder.  But, trust your instincts and seek medical advice. Find a healthcare provider who listens to you. 

There are also many online resources that can help you on your path to relief. The American Pain Foundation (APF) has a variety of materials, including a self-assessment and online toolkit and educational webinars, to help you recognize the symptoms of fibromyalgia, find the right care provider and get treatment. With the help of these resources and with the support of family and friends, you can start to feel more in control of your body. As always, you should consult with your healthcare provider about your symptoms, other health problems you may have, as well as how the pain interferes with your daily life. This will help you work together to find the best treatment plan.

5. You can live well with fibromyalgia. “There’s a misconception on the part of patients that there’s nothing you can do to alleviate your pain. But that’s not true,” said Dr. Clauw. The best first step is to get an accurate diagnosis. Then, take charge of your treatment plan by:

• Taking note of what parts of your body are tender and when the pain comes and goes.
• Learning how to describe your pain, and creating your own pain scale to chart its severity. See APF’s Targeting Chronic Pain Notebook as a resource.
• Talking to a healthcare provider about your symptoms and how to adapt your daily activities.
• Managing the stress and fatigue that may be associated with your pain.
• Keeping a record of which medications and non-drug therapies work for you.
• Finally, joining a support group in your community or online (check out APF’s online support community, PainAid) can be helpful.  Talking with others about fibromyalgia can help relieve the burden of living with the disorder and may provide you with new information on therapies and management strategies.

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“Maybe It’s Fibro?” Treatment and Management
December 16th - 8:00pm ET

Please join us on December 16th at 8:00pm ET for a 1-hour, live, interactive webinar, “Maybe It’s Fibro?” with Daniel J. Clauw, MD Professor of Anesthesiology, Medicine (Rheumatology) and Psychiatry at the University of Michigan (UM). The webinar will review the common symptoms of fibromyalgia and focus on treatment and management techniques (NOTE: Webinar will discuss overall treatment and management, not details on specific medications).

Dr. Clauw serves as Director of the Chronic Pain and Fatigue Research Center at UM. Since moving to UM in 2001, Dr. Clauw has been committed to clinical care and research in overlapping conditions such as fibromyalgia and interstitial cystitis.  Dr. Clauw is an internationally known expert in chronic pain, especially in regards to the central nervous system and its contributions to chronic pain states.  His ongoing work also includes conditions such as low back pain, osteoarthritis, vulvodynia, endometriosis, irritable bowel syndrome, and temporomandibular joint disorder.

Dr. Clauw attended UM for both undergraduate and medical school studies and then completed his Internal Medicine residency and Rheumatology Fellowship at Georgetown University. He joined the faculty at Georgetown University in 1990, and while there, founded the Georgetown Chronic Pain and Fatigue Research Center, and served as the Division Chief of Rheumatology, Immunology and Allergy, and Vice Chair of the Department of Medicine.

Space is limited so please register today.  Please note that registration is a two-step process.

• Click this link to go to the registration screen.  Complete the registration questions and press the “Register” button.
• Check your email (make sure to check in Junk or Spam Folders as well) for a message from ops @ infiniteconferencing.com to confirm your registration.
• After clicking the link in the confirmation email, you will receive a second email with links to access the webinar and a phone number to call.
• Please make sure to run the system test prior to the webinar.

If you need assistance with registering, please contact us at webinar@painfoundation.org.

Thank you,
American Pain Foundation

This project was made possible by support from Pfizer Inc

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Fibromyalgia Network Journal has been most informative, especially on the newest research being done re: FM. Members can give feedback and take surveys which allow us to be part of the information gathering of various studies.

I have included information below that will allow you to access issues at an extremely low cost. If your interested in what research is being done re: FM, this Newsletter is for you!

We also want to let some of you know that many of the topics suggested have been addressed in back issues of the Journal. To fill the holes in your collection, we are offering the entire library of the Fibromyalgia Network Journal to Members Only at the bare-bones price of $21.50. For a limited time you can purchase the complete in-stock library of 20 back issues at a 45% savings.

If you think about it, that’s almost 200 articles covering ONLY FM-related issues. A sampling of topics include some unusual problematic symptoms, medications, sleep, myofascial trigger points, stress, cognitive dysfunction, genetics, food and nutrition, brain imaging, and alternative therapies such as acupuncture, tai chi, and massage. Also covered are associated conditions such as irritable bowel, vulvar pain, headaches, back pain, acid reflux, muscle cramps, burning sensations, muscle strength issues, and much more.

As you already know, our articles don’t just tell you what the researchers are saying, they include treatment strategies, self-help options, and additional resources that can improve how you feel. More articles also help you cope with everyday problems such as working with your doctor, alleviating guilty feelings, losing weight, handling flares, communicating with family and friends, employment issues, and your rights as patients.

If you have been a Member for years, or just recently joined us, consider the benefits of owning the entire library:

• You will have a clean collection of back issues devoid of earmarks and tears that you can store in one place for handy reference.
• Fill in the gaps for the issues you have loaned out, misplaced, or intended to order.
• It makes a great gift for a family member or friend who has FM or chronic fatigue.
• Use it to educate your health care team so that you receive better care in return.

Don’t pass up this rare opportunity. Use Purchase Number B21 when you order by one of the following methods:

• Order online (use Purchase Number B21 when you check out)
• Call us toll-free at (800) 853-2929 weekdays 9 a.m. to 5 p.m. (PST)
• By mail with a check or money order. Please print an order form and note Purchase Number B21 on your check.

Additional Member Benefits

Whether you have been with us a few months or a several years, we want to remind you to take advantage of all the benefits you are entitled as they compliment your Journal and the monthly eNews Alerts.

• Continue sending us your suggested topics for future issues. We value your ideas.
• Got a question? Please send them to us so we can have them addressed by experts in the field for our Q&A section.
• Do you have a therapy that helps you? We’re not talking about a miracle cure, but something that has improved the quality of your life. Please e-mail editor@fmnetnews.com with your “Therapies that Work” idea to share with others.
• In the back of each Journal is a web address where you can find “Abstracts on the Web.” Please feel free to look over the summaries of the scientific research we use in each issue.
• Our phone number is toll-free throughout the United States and Canada at (800) 853-2929.
• Looking for a new doctor? Our doctor referral lists are available to all Members. These lists of doctors who have been recommended to us by our members, organized by state are updated regularly. To receive one, all you need to do is send us a self-addressed envelope with first-class postage. (A business size, number 10 envelope is preferred). Include a note that you are requesting the list for your state.
• Connect to support groups. The referral list also contains support group leaders in your state. These leaders are often valuable sources for information in your region. Don’t hesitate to contact them. Please mail your request to:
  

  Fibromyalgia Network
  PO Box 31750
  Tucson, AZ 85751-1750

We do not post state referral lists online to avoid solicitation by e-mail, phone, or mail to our doctors and support group leaders by marketing companies, advertisers, pharmaceutical companies, etc.

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I was encouraged when I read the following article. Researchers are beginning to “get” that the reason FMS sufferers test normal in their blood work is because the wrong tests are being run! The “someday” we FMS/CFS have heard about may be closer than we think!

Researchers Use Exercise to Illuminate How You Feel

Posted: August 27, 2009 by Fibromyalgia Network, P.O. Box 31750, Tucson, AZ 85751 (800) 853-2929.

What if a blood test could reveal the muscle fatigue, pain and exhaustion that you feel? This may seem like a pipe dream, but a husband and wife team at the University of Utah (Alan Light, Ph.D., and Kathleen Light, Ph.D.) just published very encouraging preliminary findings and are now working to refine their biomarker techniques.*

One of the key elements of the Lights’ studies involves looking at what happens when people with chronic fatigue syndrome (CFS) and fibromyalgia exercise. During and after exertion is when CFS and fibromyalgia patients say they feel the worst, which is why the Lights are capturing blood samples up to 48 hours after a standard exercise routine. Healthy people, however, usually find a bout of exercise to be invigorating, and it pours out substances that reduce painful sensations.

read more…

For 21 years, Fibromyalgia Network has been providing support for fibromyalgia patients, their families, and treating physicians. This Member-supported organization delivers the news you can use through our quarterly Journal and other Member benefits. Our goal is to enrich the lives of fibromyalgia patients. Join the Fibromyalgia Network family today or call us toll-free at
(800) 853-2929.

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Treating Airflow Restrictions During Sleep

Ninety-five percent of people with fibromyalgia (FM) wake up feeling unrefreshed. But don’t expect a visit to a sleep lab to pinpoint your problem symptoms. Depending upon the research study you read, the prevalence of primary sleep disorders in FM and chronic fatigue syndrome (CFS) patients varies widely, but sometimes it may be as little as 18 percent.¹

Primary disorders identified by overnight sleep studies include obstructive sleep apnea, periodic limb movement sleep (PLMS), and narcolepsy. So the difficulties you face all night long are not usually caused by what scientists view as primary sleep disorders, but that does not make them any less real.

Speaking at the International Association for CFS, Charles Lapp, M.D., of Charlotte, NC, says, “We just are not doing the right studies to find the sleep disorders in FM and CFS patients.” In other words, the current technology is not capable of accurately detecting the sleep problems you face each night. In the July 2009 issue of the Fibromyalgia Network Journal you will read about the less researched yet very common sleep disorders that Lapp finds in his FM and CFS patients, as well as his recommendations for treating them. And although upper airway resistance syndrome (UARS) is a sleep disorder that can be identified during a sleep study, many centers tend to overlook it.

“The problem,” says Lapp, “is that UARS patients do not meet the criteria for apnea, in which the airway collapses and the breathing stops.” People with UARS struggle with breathing and this causes frequent arousals associated with daytime fatigue, headaches, and irritable bowel. However, the airways don’t collapse in UARS.

To better understand the difference between apnea and UARS, Lapps suggests that you consider the back of your throat to be like a tent. When you are upright, your throat is open and there is lots of air movement through the tent. If people with apnea lie down to sleep, the tent in the back of their throat collapses. They stop breathing for a moment and their oxygen levels drop, until they gasp for breath and become aroused. But, once placed on a continuous positive airway pressure (CPAP) machine, this blows up their tent so that they breathe easily and sleep throughout the night.

“UARS is not a tent disorder because the tent never collapses and the breathing is not obstructed,” says Lapp. “UARS is more like breathing through a straw or hose. These patients struggle to breathe through a partially deflated tent and because of this they do not get deep sleep.” One study has shown that almost all FM patients have UARS and placing them on CPAP does benefit them, but not to the extent that it works for apnea patients.² “I can tell you from clinical experience that CPAP is not the answer,” says Lapp. “It helps patients sleep better, but it doesn’t cure their pain or fatigue.”

Being able to tolerate or afford CPAP is another issue for people with UARS. Health insurance companies often will restrict CPAP coverage to obstructive sleep apnea patients who are able to consistently demonstrate a 3 to 4 percent drop in blood oxygenation levels (something that doesn’t occur with UARS). Lapp says that some of his patients sleep in a recliner to keep the airways open. Aggressive treatment of acid reflux and nasal allergies, including irrigation of the sinuses with saline sprays or the use of a neti pot, is helpful. Sleeping on one’s side will also improve airflow, and you can either use a pillow wedge or arrange various sized pillows to create a ramp that props up the head if CPAP is not an option.

Although CPAP and other approaches will not cure your FM or CFS, Lapp emphasizes that it is a sleep disorder that should be addressed because patients do sleep better. In addition, he says CPAP does prevent hypertension and stroke, and reduces metabolic diseases that can lead to weight gain and diabetes. In other words, every little bit counts!

1. Reeves WC, et al. BMC Neurol 6:41, 2006.
2. Gold AR, et al. Sleep 27:459-66, 2004.

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The latest U.S. Food and Drug Administration approved drug to treat fibromyalgia, Savella, became available May 4. Since the release of this medication, many people have asked us for information about Savella. During the past five years of clinical trials, Fibromyalgia Network has referred to Savella by its study name “milnacipran” in several back issues.

Details about the medication, its side effects, and who may or may not be good candidates for the drug can be read in the Latest News Archives section of our website.

Since Savella is a new medication in the United States, many patients and doctors have been inquiring about it. Fibromyalgia Network would like to provide you with useful feedback about this drug. If you are taking or have taken Savella, we invite your comments on this one-page survey. We hope to share these comments in an upcoming eNews Alert. As usual, all information contained in this survey is anonymous.

If you have taken Savella, please click here to give us your comments.

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Regardless of the geography or climate you live in, the societal culture that has shaped you, the type of food you eat, or the language you speak, the core symptoms of fibromyalgia (FM) patients living worldwide are the same. Kevin Murphy, M.D., and colleagues from Pfizer Pharmaceuticals sought to determine if the many symptoms of FM and this condition’s impact on life was the same in diverse areas of the world.* In particular, they stratified patients into three groups: United States, Europe, and other regions (e.g., Canada, Australia, Mexico, etc.). Patients completed an exhaustive array of questionnaires (in their native language) and the results for each of the three groups were compared.Across the three regions or groups, consistency in the following averaged scores were observed:

• pain of 6.5 to 6.9 on a scale from zero to ten
• FM Impact Questionnaire score of 60 to 62 points (100-point scale)
• sleep problem index of 58 to 61.7 (100-point scale)
• vitality score of 24 to 28 (100-point scale)
• physical functioning score of 42.4 to 44.4 (100-point scale)
• mental health of 55.7 to 59.8 (100-point scale)

The average age of each group was 48.4 to 49.4 years, and average duration of FM symptoms was 8.1 to 9.7 years. The authors concluded that patients with FM, despite diverse demographics, had largely similar disease characteristics that were consistent with moderate-to-severe symptoms.

* Murphy K, et al. J Pain 10(4 suppl 1):S4, Abstract 113, 2009.

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Fibromyalgia Online: Below are three recently recorded video and audio presentations on fibromyalgia. Click on the topic below to tune in.

• Winning Life Through Pain
• Living with Fibromyalgia and Chronic Illness
• Painful Truth About Fibromyalgia

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