An excellent source of information on living, coping, and managing symptoms associated with fibromyalgia is from the patients themselves.
That’s why the Fibromyalgia Network often surveys its Membership and other patients on current topics that involve daily living issues, sleep, pain management, medications, and non-drug therapies.
Results of surveys that are open to the public are often immediately available following the survey. More detailed surveys are often accompanied by feedback from experts on the topics and summarized in issues of the Fibromyalgia Network Journal. If you are a current Member and would like to participate in these valuable surveys, please contact us with your name, Member ID number (located on your mailing label), and e-mail address. If you are not a Member, click here to join, and make sure to include your e-mail address so that we can alert you to the next survey!
Does Your Treatment Plan Measure Up?
While you may be taking medications for your fibromyalgia symptoms, have you considered alternative therapies or nutritional supplements? And when it is all said and done, how much pain relief do you expect from your combined drug and non-drug treatment regimen? When patients have a heart attack or other serious health problem, we often expect near complete recovery. Yet fibro doctors believe patients’ expectations for symptom relief are too high?
Let us know how you feel about your overall fibromyalgia treatment plan?
How Do You Measure Up to the New Diagnostic Criteria?
It’s been 20 years since the American College of Rheumatology (ACR) published the original criteria to diagnose fibromyalgia. The newly proposed criteria eliminates the old requirement of a tender point exam and replaces it with a symptom checklist.
We invite you now to see how you measure up to this new grading system in the following survey. This does not take the place of a professional diagnosis, but will give you an idea of what is being considered. You will have an opportunity to comment at the end of the survey. Find out what other patients and doctors are saying about the new criteria in the article “New Directions for Diagnosing Fibromyalgia” in then July 2010 issue of the Fibromyalgia Network Journal.
The following survey results
have been printed in the Fibromyalgia Network Journals.
Do Nutritional Supplements Really Work?
Several different energy producing and anti-oxidant supplements might be beneficial for reducing the symptoms of fibromyalgia, according to research published over the past few months. You may already be taking supplements to build strength, provide fuel to your cells, reduce your pain, or increase your energy.
For the most part, many supplements have little or no side effects and some are reasonably inexpensive. Part I of a two-part series titled “Nutritional Supplements: Boosting Energy and Brain Power” appears in the July 2010 issue of the Fibromyalgia Network Journal. The second part, titled “Nutritional Supplements: Patients Rate Top 15″ appears in the October 2010 Journal.
How Helpful Are Your Medications?
Fibromyalgia patients often take several medications to manage symptoms. So it is natural for you to want to know what other patients are taking and what they think about their medications. More than 3,600 women and men with fibromyalgia told us about their medications, and were able to talk about trends in prescribing practices.
The article “Meds Survey: What Works, What Doesn’t & What are Doctors Prescribing” appears on the April 2010 issue of the Fibromyalgia Network Journal.
A Sleep-Friendly Bedroom
You might be ready for bed, but is your bedroom ready for sleep? 5,000 patients share functional and inexpensive changes that can improve your sleep environment. Patients also offer tips on finding a new bed and making the one you have more comfy. The article “Creating a Sleep-Friendly Bedroom” is featured in the July 2009 issue of the Fibromyalgia Network Journal.
Managing Your Sleep
Struggling to staying asleep at night? You are not alone. Nearly 5,000 men and women with fibromyalgia share their sleep-improvement strategies. Find out what other patients are doing to slow down those racing thoughts before going to bed and how they turn off the “noise” in their head when they wake up in the wee hours of the morning. Patients also share wind-down routines that help them get to sleep faster. “Sharing Strategies on Managing Sleep” is featured in the April 2009 issue of the Fibromyalgia Network Journal.
Handling Social Stereotypes and Gender Issues
Men and women with fibromyalgia share their experiences on how they handle the public’s biased perception of living with the illness. In this survey, about 4,500 men and women with fibromyalgia discuss how they handle hurtful comments and cope with social stereotypes related to the illness. Women talk about how they cope with the “weaker sex” stereotype, while men discuss how they handle living with a “woman’s disease” in the article “Social Stereotypes and Gender Issues” featured in the January 2009 issue of the Fibromyalgia Network Journal.
Employment and Income
For many patients with fibromyalgia, regular full-time employment is no longer possible. The complexity of managing your health, your home, and career is frustrating and unpredictable. But that shouldn’t limit you from exploring your options on generating some extra income.
More than 4,400 fibromyalgia patients share what they do to make ends meet and boost their self-esteem in the article “Employment Issues & Generating Extra Income.” This survey is featured in the October 2008 issue of the Fibromyalgia Network Journal.
Parenting and Grandparenting
One of the greatest joys of life is being a parent or a grandparent. But dealing with your pain and fatigue while taking care of children can be overwhelming and frustrating. There are strategies to help you be part of your kids’ lives without draining your energy bank. More than 4,400 parents and grandparents with FM share their best parenting ideas and tips in the article “Parents and Grandparents: Getting the Most out of Your Time.” The response to this survey is featured in the July 2008 issue of the Fibromyalgia Network Journal.
Breakthroughs and Progress
Tremendous inroads have been made in the areas of awareness and acceptance of fibromyalgia over the past 20 years. In this survey, the Fibromyalgia Network was eager to learn about trends in diagnosis, treatment, and social awareness. More than 3,300 Members responded, outlining areas where progress has occurred and identifying the greatest roadblocks still facing patients and doctors in the fibromyalgia field. The results of the survey are published in the article “Acceptance, Awareness Improve Patients’ Lives” in the April 2008 issue of the Fibromyalgia Network Journal.
Coping with Flares
You wake up feeling like you have been run over by a Mack truck. The aching is worse than usual. You think back at what you did yesterday to cause this. You are worried that you are heading into a flare.
How you respond right now could make the difference when it comes to taking the edge off your pain or the length of your flare. More than 2,200 Members of the Fibromyalgia Network give us their best coping strategies on heading off flares and living with persistent symptoms. The response to this survey is featured in the article “Coping with Flares: Keeping a Positive Outlook,” printed in the October 2007 issue of the Fibromyalgia Network Journal.
Successful Communication Strategies
Having fibromyalgia is not your fault, yet telling your partner and family members how you feel is a huge stumbling block that can lead to tense situations and hurt feelings. In this survey, more than 2,200 Members of the Fibromyalgia Network relay their experiences and strategies on how they deal with pain and communicate with the people in their life.
Many patients told us that trying to communicate with family members about their symptoms was often perceived as complaining. Others told us that when they don’t talk at all, it makes their family members feel uncomfortable or helpless. But an open relationship with a helping of humor and a little finesse can relieve frustrations and restore a sense of balance. The survey article “Coping and Communicating with your Fibromyalgia” appeared in the July 2007 issue of the Fibromyalgia Network Journal (out of print).
|Get all of the survey articles mentioned above when you order our 18-Back Issue Membership Pack. Click here for details.|
Survey results are printed in Fibromyalgia Network Journal issues. Survey answers are intended to assist Members with coping methods, self-help techniques, or other forms of patient-to-patient advice. The Fibromyalgia Network surveys are not designed to be a scientific studies.