Patient Surveys
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 on current topics that involve daily living issues, sleep, pain management, medications, and non-drug therapies. The responses to these surveys are shared with all Members in the issues of the Fibromyalgia Network Journal. The patient surveys are often accompanied by feedback from experts on the topics.
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.
Don't miss out on future surveys. If you are not a Member click here to join, and make sure to include your e-mail address so that we can notify you of the next survey! The following survey results have been printed in the Fibromyalgia Network Journals.
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" appears in the July 2007 issue of the Fibromyalgia Network Journal.
Drug Side Effects & Beneficial Meds Survey
Curious about how other people with fibromyalgia and chronic fatigue syndrome respond to medications? If you were to try a new drug today, which meds have the most potential to help you with the least amount of side effects? More than 1,000 patients responded to these questions, and more. The survey results are featured in the article "Weighing the Benefits Versus the Side Effects of Medications" in the July 2006 issue of the Fibromyalgia Network Journal.
Family Ties to Fibromyalgia
Are pain and sleep disorders hereditary? What other conditions are closely associated with fibromyalgia?
Fibromyalgia Network conducted a survey to help answer these questions. Close to 600 people participated, including 389 Members and 189 of their close blood relatives. The results appear in the article "Family Links to Pain and Sleep" in the October 2005 issue of the Fibromyalgia Network Journal.
Non-drug Therapies Survey
Have you ever wondered what non-drug therapies might be effective in alleviating some of your fibromyalgia symptoms? More than 1,100 patients respond to this survey to help identify the non-drug therapies that were most helpful. In addition, more than 100 doctors responded to the physician version of the survey. Physicians were unaware that patients were surveyed, and vice versa. The physician version of the survey differed slightly from the patient one. While patients were asked their gender, age, and duration of symptoms, physicians were asked their medical specialty and the number of fibromyalgia patients they treat.
The results of this survey are presented in two parts. Preliminary findings of the survey are presented in the July 2004 Fibromyalgia Network Journal. Part 2 of the survey is presented in the October 2004 Journal. The second article includes patient and doctor feedback about WHY given therapies are effective, along with published reports on selected approaches.
| 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.
