Patients are an excellent source of information on living, coping, and managing symptoms associated with fibromyalgia. The Fibromyalgia Network depends on this feedback and often surveys patients on topics related to daily living, sleep, pain management, medications, and nondrug therapies. Results of surveys that are open to the public will be available immediately following completion.
Does Your Treatment Plan Measure Up?
You may be taking medications for your fibromyalgia symptoms, but have you considered alternative therapies or nutritional supplements? And how much pain relief do you expect from your combined drug and nondrug treatment regimen? 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 over 20 years since the American College of Rheumatology (ACR) published the original criteria to diagnose fibromyalgia. The new 2010 criteria eliminate the old requirement of a tender point exam and replaces it with a symptom checklist.
See how you measure up to this new grading system. This survey does not take the place of a professional diagnosis, but will give you an idea of what was proposed, and you can offer comments at the end.
Now that more than 90% of the diagnostic tender points have been shown to actually be myofascial trigger points, the use of the new criteria ignores these potentially treatable sources of pain. So even if you do have a high enough score on this “symptom checklist” for identifying fibromyalgia, get treatment for those sore, muscular knots in your muscles! See our sections on Nondrug Treatment and Self-Help Strategies for more advice.
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. A few of the more commonly endorced supplements include Omega-3 Fatty Acids, Co-Enzyme Q10, vitamin D, magnesium, melatonin, and the B vitamins. Click on the various links to read the research on many of these supplements.
How Helpful Are Your Medications?
Fibromyalgia patients often take several medications to manage symptoms. So it is natural 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 talked about trends in prescribing practices.
The article “Meds Survey: What Works, What Doesn’t & What are Doctors Prescribing” was featured in a past issue of the Fibromyalgia Network Journal. For a general description of the commone meds used in fibro, see our Treatment Section.
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” was featured in a 2009 issue of the Fibromyalgia Network Journal, but you can still read about living aides to make life more comfortable.
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 shared wind-down routines that helped them get to sleep faster in a 2009 issue of the Fibromyalgia Network Journal.
Handling Social Stereotypes and Gender Issues
Men and women with fibromyalgia share their experiences and describe the public’s biased perception of living with their illness. 4,500 men and women discuss coping with hurtful comments and social stereotypes related to the illness. Women talked about dealing with the “weaker sex” stereotype, while men discussed how they handle living with a “woman’s disease” in a prior journal article. However, you can read a research report comparing men and women with fibro.
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 demonstrated how creative patients can be, but also how difficult it is to work with fibro.
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. 4,400 parents and grandparents with fibro share their best parenting ideas and tips in a 2008 Fibromyalgia Network Journal article.
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 were published in the article “Acceptance, Awareness Improve Patients’ Lives” in a 2008 issue.
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, 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 patients gave us their best coping strategies on heading off flares and living with persistent symptoms in the article “Coping with Flares: Keeping a Positive Outlook.” While this issue is out-of-print, see advice on hurdling flares in our coping resources section.
Survey results appeared in Fibromyalgia Network Journal issues. Survey answers are intended to assist people 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.