FEBRUARY 2015 REACHING OUT INC NEWSLETTER HEADLINE GOES HERE For survivors of Fibromyalgia & CFS/ME

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VOLUME #129 ISSUE #1

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Who are we? We are you! We are survivors that found each other on the web and banded together to support each other. Do you need some support What’s or in a friend this Issue? that understands? We are here for you! What are our dues? NOTHING! We don’t have dues and never will. Just you being you and supporting others is worth more to our cause – helping people live as normal a life as possible. That is who we are! Just people surviving and making a small difference in this great big world. We would love to be your friend!

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DETAILED and EASY to understand information on the causes of Fibromyalgia and other autoimmune diseases – and what you can do to get HEALTHY again. http://www.Health-Reports.com

New Criteria Would Double Fibromyalgia Cases More than 5% of the general population could be diagnosed under new system. Applying the proposed 2010 modified American College of Rheumatology (ACR) fibromyalgia classification criteria greatly expands the number of persons who qualify for the diagnosis compared with earlier ACR criteria. More than 5% of the general population fulfills the modified 2010 criteria, compared with less than 2% who fulfilled the 1990 and the proposed 2010 criteria, report researchers in Arthritis and Rheumatology. The findings "do not support previous claims that the modified 2010 criteria do not result in inflated prevalence estimates," they concluded. "We have demonstrated that the prevalence of fibromyalgia varies more than four-fold with the application of different ACR fibromyalgia classification criteria sets, the lowest estimate being with the 2010 criteria and the highest with the modified 2010 criteria. Further, we have shown that there are fundamental differences in the populations identified, in terms of sex ratio and preexisting comorbid rheumatologic conditions." The modified 2010 classification criteria rely on self-reported pain and a simplified self-reported version of somatic symptoms, whereas previous ACR classification criteria required moderate or high levels of chronic pain using clinical judgment. A large population survey in Germany found a prevalence of fibromyalgia of 2.1% using the modified 2010 criteria. Investigators led by Gareth T. Jones, PhD, at the University of Aberdeen in Scotland, compared three sets of fibromyalgia classification criteria -- the ACR 1990 criteria, the ACR 2010 -Continued On Next Page-

criteria, and the ACR modified 2010 criteria -- in a general population sample of adults in northeast Scotland. Among 1,604 respondents to screening questionnaires that asked about pain, symptoms, and rheumatologic diagnoses, 104 of 269 who reported chronic widespread pain per the ACR 1990 criteria or fibromyalgia according to the ACR modified 2010 criteria accepted an invitation to attend a research clinic for a clinical examination. Of the 104 clinic attendees, 32 (31%) met at least one set of criteria for fibromyalgia. Eleven met the ACR 1990 criteria, seven met the ACR 2010 criteria and 27 met the ACR modified 2010 criteria. Overlap was modest, with only four subjects (12.5%) meeting all three sets of criteria. The prevalence of fibromyalgia was 1.7% according to ACR 1990 criteria, 1.2% according to ACR 2010 criteria and 5.4% according to the ACR modified 2010 criteria. Those meeting the ACR 1990 criteria were mostly female, with a female to male ratio of 13.7 to 1. The female to male ratio was lower when using the ACR 2010 criteria (4.8 to 1) and lower still when using the ACR modified 2010 criteria (2.3 to 1). A total of 55% who met the ACR 1990 criteria reported prior rheumatologic diagnoses, compared with 28% who met the ACR 2010 criteria and 45% who met the ACR modified 210 criteria. All who fulfilled both the ACR 2010 and the ACR modified 2010 criteria met the ACR modified 2010 criteria on the basis of a high score on the Widespread Pain Index rather than the Symptom Severity Scale. The specificity of the ACR 2010 criteria was "near perfect," with 92 of 93 participants correctly identified from these criteria as not having fibromyalgia, the authors note. The sensitivity, however, was barely more than 50%. "The modified 2010 criteria, while exhibiting improved sensitivity (more participants positive for fibromyalgia according to the 1990 criteria were correctly identified), suffered from a decrease in specificity (fewer participants negative for fibromyalgia according to the 1990 criteria were correctly identified)," they wrote. Before confirming the new criteria, the authors urge the ACR to consider that the new set of criteria identifies a different patient group compared with the ACR 1990 criteria, with the modified 2010 criteria influenced more by somatic symptoms rather than pain, and that "operationalization of any new criteria must be clear and unambiguous, as well as immediately implementable." They state that, "This is not currently the case." A limitation is the modest (36%) response rate to the initial survey and the reliance on very small samples to determine prevalence. Another limitation was the use of a single clinician for the examination and case history. http://www.medpagetoday.com/Rheumatology/Fibromyalgia/49913

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The Importance of Acceptance By Julie Holliday January 19, 2015 · www.ProHealth.com One of the qualities I’ve found most helpful to cultivate with regard to ME/CFS and fibromyalgia has been acceptance. Many people struggle with the idea of acceptance, associating it with a sense of giving up. However I believe it’s possible to be both accepting and hopeful. Acceptance without the belief that you can make a difference to your future isn’t helpful, but to me that’s resignation not acceptance. Acceptance is helpful when it involves an acknowledgement of exactly how things are in the here and now and that you can’t change what has happened before this moment. It involves choosing not to dwell on what happened to lead to this moment or how things were better before. Helpful acceptance recognizes that life needs to be lived differently for a while and that we need to adapt to our new circumstances. Acceptance coexists with hope when we recognize that the way we respond to our circumstances can impact future outcomes. Our choices and actions can result in better illness management and better emotional wellbeing. By accepting that the future is unknown, we can aim to influence it in positive ways. Our well-being isn’t dependent on our circumstances; it has more to do with how we choose to see them and respond to them. Acceptance is useful both on the macro level of accepting the illness as a whole and on the micro level of accepting our moment-to-moment circumstances. Before I accepted that I had this condition, I fought it and pushed against it, only to find myself getting worse and worse. To reach an acceptance of this illness I first had to acknowledge the losses involved and allow myself to grieve the things I had to let go of. By accepting my feelings as an understandable reaction to my circumstances, my grief was able to flow to its natural conclusion. Accepting that life had to be lived differently for a while allowed me to focus on how I could live it in a way that optimizes my health given my new circumstances. I then found that by learning to recognize and accept my daily energy limit, accepting how this changed from day to day, I was better able to manage my health. Accepting the inevitability of bad days and not beating myself up for having them helps me to keep my spirits up. A compassionate acceptance that my spirits will dip from time to time prevents the vicious cycle of negative thinking which could easily lead to depression. Acceptance is also the natural antidote to resistance. Resistance is very wasteful of our energy. When we resist our limits, we push too hard and crash. When we resist our feelings, we expend energy keeping them at bay. Resistance builds tension and stress, which doesn’t do us any good. Similarly if we struggle to accept certain aspects of our personality or our behavior, we will also carry an extra weight of stress and tension. We can let go of this tension if we accept ourselves as human and imperfect. We can’t change the fact that we made mistakes in the past, but we can accept ourselves as fallible, learn from them, choose to put them right where we can and do things differently in the future. By letting go of resistance and embracing acceptance our energy becomes more freely available to us to spend on the things we choose. There are so many different ways that acceptance can benefit our wellbeing, it’s well worth paying it some attention. What do you resist? What areas of your life could benefit from a little more acceptance? Julie Holliday (http://www.mecfsselfhelpguru.com) is a writer and coach committed to helping people overcome the challenges of chronic illness and live the best life possible. Having completely recovered from ME/CFS once, Julie enjoyed 7 years of vibrant and active health before being struck again. She is now dedicated to sharing all that she has learned about what has contributed to her initial recovery and her present happy and fulfilling life as a chronic illness warrior. Printed From: http://www.prohealth.com/library/showarticle.cfm?libid=19512

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Honey A spoonful of honey is nature’s equivalent of an energy drink. Low on the glycemic index, this natural sweetener acts as a timereleased muscle fuel during exercise and helps replenish muscles post-workout.

Spinach An excellent source of iron, a key component of energy production in the body. Eat a spinach salad for lunch and you probably won’t experience that afternoon energy slump.

Salmon This pink fish also contains protein and vitamin B6, niacin and riboflavin—all of which help convert the food you eat into energy.

Eggs Containing the highest complete form of protein in any food (eggs provide 30% of your daily value of protein. All of the essential amino acids that your body uses to rebuild muscle can also be found in eggs.

Apples Not only will an apple a day keep the doctor away, it’ll also give you a powerful jolt of energy. Snack on apples with cheese for an especially effective pick-me-up.

We all need some tips to increase our energy. Especially when we don’t have the time to rest! Source: webmd.com

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Can Bone Broth Help Fibromyalgia? By Lana Bandoim Bone broth is the latest food trend linked to health benefits, and it is appearing on more restaurant menus. Although Brodo in New York City charges $9 for a large plastic cup of the broth, the recipe is simple to duplicate at home. In addition, some patients and medical experts believe it can help fibromyalgia. Drinking bone broth is being described as indulging in the latest health beverage, but it has been around for centuries. The basic recipe to make it requires boiling animal bones for hours with your favorite herbs or spices and straining the final product. If you are on a budget and cannot afford the $9-cups, then use Brodo’s chef Marco Canora’s recipe for bone broth made with chicken and beef to recreate the item at home. Dr. Liesa Harte believes bone broth should be part of a modified diet for fibromyalgia patients. She recommends avoiding dairy, gluten, nightshades, caffeine, sugar, alcohol and processed foods. However, she wants patients to add bone broth, salads, salmon, protein, juice, probiotics and prebiotics to their diets. Dr. Harte suggests drinking bone broth once a day for 30 days, and then reducing the amount consumed. She believes the broth can help fight leaky gut and inflammation while improving the immune system. Dr. Daniel Pompa also recommends using bone broth and considers it an ancient healing tool. He traces the history of the broth back to Egypt and points out even fish bones can be used to make it. The broth helps digestion, but this is not the only benefit. Fibromyalgia patients claim the collagen in the liquid also helps their hair, skin and bones. http://www.emaxhealth.com/users/lana-bandoim

Ask the Doctor How do I know that I really have chronic fatigue syndrome? By Lucinda Bateman, MD www.ProHealth.com Q: How do I know that I really have chronic fatigue syndrome and that we’re not missing a deeper cause? A: This is always an important question. When a new patient comes to my clinic we do our best to look for a “deeper cause” as well as conditions that may have overlapping symptoms, and treat them adequately. Then, when satisfied we have the done the most reasonable assessment possible at that point in time, we enter a management mode for 6-12 months in which we try to minimize disabling symptoms. But it is always important to re-investigate new or changing symptoms, and I always appreciate input or a “fresh look” from another specialist periodically. Many illnesses evolve slowly [multiple sclerosis or myelodysplastic syndromes, for example] or only periodically exhibit symptoms, so they may not be evident upon initial workup. I like the combination of an attentive primary care provider and an ME/CFS specialist, both thinking diagnostically and comparing notes over time.

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Fibromyalgia Survey Needs Your Help By Lana Bandoim The National Fibromyalgia & Chronic Pain Association has a new survey and needs more participants. The voluntary survey is anonymous, and results will be used to advocate better for patients suffering from chronic pain. The organization is concerned about how new government regulations for opioid medications are affecting fibromyalgia patients. The National Fibromyalgia & Chronic Pain Association (NFMCPA) is looking for patients who take prescription hydrocodone medications. The survey is available online and will close on March 8. The NFMCPA is a nonprofit 501(c)(3)charitable organization, and it is worried that the new guidelines are making access to pain medication more difficult for chronic pain sufferers. The National Fibromyalgia & Chronic Pain Association explains that hydrocodone is now classified as a Schedule II drug instead of Schedule III. Stricter guidelines are in place such as forcing patients to sign contracts with doctors related to pain medication use. In addition, prescriptions must be hand-signed by doctors, and appointments have to be made monthly. The organization wants fibromyalgia patients to share how these guidelines are affecting them in a survey. The survey is confidential and anonymous, and the NFMCPA promises data will be stored securely. You must be at least 18 years old to participate. In addition, you must have taken hydrocodone medication such as Vicodin or Lorcet to take part in the study. Questions range from describing medical chronic pain diagnoses to sharing the type of health insurance you use. Access the survey by clicking this link:

https://www.surveymonkey.com/r/Hydrocodone100Days

Important Links For a more complete list, please visit our web site at http://www.reaching-out.info. Remember, we offer FREE advocacy services. If you need help with something and can’t find a link here or on our web site, please email me at mailto:[email protected]. CFIDs Assoc. of America: http://www.cfids.org Arthritis Foundation: http://www.arthritis.org National FM Assoc.: http://www.fmaware.org Am. Pain Society: http://www.ampainsoc.org American Academy of Pain: http://www.painmed.org Needy Meds: http://www.needymeds.com WebMD: http://www.webmd.com Social Security Admin.: http://www.ssa.gov IMMUNE SUPPORT: http://www.immunesupport.com Good Doctor List: http://www.co-cure.org/Good-Doc.htm FM/CFS/ME Resources: http://fmcfsme.com/

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Chronic Fatigue Receiving Serious Attention Chronic fatigue syndrome is a real and serious disease that needs a new name to reflect that — and a straightforward way to diagnose the illness, a U.S. government advisory group declared earlier this month. Patients flooded the prestigious Institute of Medicine with stories of years of misdiagnosis or even being dismissed by skeptical doctors. An institute panel sought to redefine this long-controversial ailment, setting five main symptoms as simple criteria for doctors to use in making a diagnosis. And the report called for a new name to replace the "chronic fatigue" moniker that so many patients said belittled their suffering. The choice: Systemic Exertion Intolerance Disease, or SEID, to reflect that symptoms worsen after exertion. People shouldn't "wander around in the wilderness for years trying to get a diagnosis," said Dr. Ellen Wright Clayton, a Vanderbilt University specialist on genetics and the law, who chaired the committee. The report stressed, "It is not appropriate to dismiss these patients by saying, 'I am chronically fatigued, too.' " Some groups had already begun calling the illness by a more tongue-twisting name — myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. Whatever it's called, the disorder's hallmark is persistent and profound fatigue — where, depending on the severity, a simple activity like grocery shopping can put someone to bed — often accompanied by memory problems and other symptoms. There's no medical test for it, leaving doctors to rule out other possible causes, and there's no specific treatment. Last week's report said anywhere from 836,000 to 2.5 million Americans suffer from the disorder, most of them not diagnosed. In 2013, the Department of Health and Human Services asked the institute to examine the state of chronic fatigue diagnosis, to the dismay of some patient advocacy groups. But the committee included several chronic fatigue medical specialists and two patients, and ultimately received hundreds of comments from the public. The institute panel urged HHS to develop a toolkit that physicians could use to diagnose the disorder using its new criteria, in addition to recommending the name change. The committee said diagnosis requires three core symptoms: Fatigue and reduction in pre-illness levels of activity that last for more than six months, that post-exertion worsening, and sleep that is unrefreshing despite exhaustion. In addition, patients must have at least one other symptom: Cognitive impairment, sometimes described as "brain fog," or what's called orthostatic intolerance — meaning symptoms improve when lying down and patients find it hard to stay upright for long. There are ways to treat some of the symptoms, if doctors make a diagnosis, said committee member Dr. Lucinda Bateman of the Fatigue Consultation Clinic in Salt Lake City. "We are hoping that these diagnostic criteria provide a very clear path." RESOURCES To spread the word, government advisory group members are writing about the new chronic fatigue syndrome diagnostic criteria in several medical journals, and the institute's website, www.iom.edu, eventually will post a physician guide. http://www.clarionledger.com/story/life/2015/02/16/chronic-fatigue-receiving-serious-attention/23515349/ Visit us at: http://www.reaching-out.info Subscribe: mailto:[email protected] or by phone: 785-220-7969

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Quick and Fun Trivia

SHARED BY: Melodie Anne Zinyk on the RO Face Book page.

• Banging your head against a wall burns 150 calories an hour. (wait! I should be skinny!) • Pteronophobia is the fear of being tickled by feathers! • When hippos are upset, their sweat turns red. • Human saliva has a boiling point three times that of regular water. • If you lift a kangaroo’s tail off the ground it can’t hop. • A toaster uses almost half as much energy as a full-sized oven. • You cannot snore and dream at the same time. • A baby octopus is about the size of a flea when it is born. • A sheep, a duck and a rooster were the first passengers in a hot air balloon. • In Uganda, 50% of the population is under 15 years of age. http://www.thefactsite.com/2011/07/top100-random-funnyfacts.html://uselessfacts.net

One of our Fibro sisters, Debbie, found this when she went outside the other day! Can you imagine walking out to your driveway and finding thousands of Killer African Bees? Pretty amazing sight! The beekeeper came the next day to take them to a safer place.

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Effects of a Gluten-Free Diet on IBS and Fibromyalgia By Umberto Volta Gluten-free diet in the management of patients with irritable bowel syndrome, fibromyalgia and lymphocytic enteritis. Abstract: An evaluation of the effect of 1 year of a gluten-free diet was performed in patients with irritable bowel syndrome and fibromyalgia syndrome displaying lymphocytic enteritis. Gluten withdrawal produced a slight but significant improvement of the functional symptoms, suggesting that gluten might be partly responsible for this clinical picture. This hypothesis should be confirmed by a double-blind placebo-controlled trial since it cannot be ruled out that the studied patients displayed a subjective sensation of improvement due to the placebo effect of gluten withdrawal. Further investigations are needed before recommending gluten withdrawal in patients with fibromyalgia and lymphocytic enteritis. Source: Arthritis Research & Therapy, December 23, 2014. By Umberto Volta. Department of Medical and Surgical Sciences, University of Bologna, via Massarenti 9, Bologna 40138, Italy.

Winter has come late for many of us. Snow everywhere! Many of you are buried in it! We have not had a ton here, but these up and down temperatures are testing me! Boy, I can‘t remember the last time I was this achy! Hurry up SPRING! Hope everyone is doing well. Any article or topic ideas are always welcome. Just send me an email!

There is hope through awareness!

Cuz

Reaching Out Inc. is run by survivors of Fibromyalgia and/or Chronic Fatigue Syndrome/ME. We are not doctors and encourage everyone to check with their own doctor before starting any treatments, diets, medications, etc. that are mentioned in any article. Reaching Out does not endorse or sponsor any doctors, supplements or treatment plans featured in our newsletter or on our website. If you need to contact the Editor for any reason, please do so by emailing Cuz at mailto:[email protected] or by phone: 785-220-7969.

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