Fibromyalgia Patient Survey Shows Diversity in Approach

Fibromyalgia Patient Survey Shows Diversity in Approach

By Donna Gregory Burch

donnasnowday

Donna Gregory Burch

Opioids are the most helpful treatment for fibromyalgia, according to findings from National Pain Report’s annual fibromyalgia survey. More than 1,400 fibromyalgia patients responded to NPR’s online survey, which kicked off on May 12 in recognition of International ME/CFS and Fibromyalgia Awareness Day.

Of those respondents, nearly 22 percent said opioids improve their symptoms “a lot,” and another 35 percent said opioids help their symptoms “somewhat.”

Medical marijuana was the second most effective treatment, according to survey respondents, with 14 percent saying that it helps them “a lot.”

Numerous research studies support the use of exercise to help manage fibromyalgia symptoms, and many of our respondents find it helpful as well. About 44 percent said exercise was “somewhat” helpful in reducing their symptoms.

Around 42 percent found relaxation practices, such as meditation, yoga, tai chi and others, “somewhat” helpful in relieving symptoms.

Twenty-seven percent said making dietary changes (going gluten free or dairy free, vegetarian, paleo, etc.) was “somewhat” helpful. But another 33 percent said dietary changes had “no effect at all” on their symptoms.

Fibro survey thumbnail

Click image for survey results

We also asked patients if they’d benefited from using any of the three drugs approved by the U.S. Food and Drug Administration to treat fibromyalgia. Unsurprisingly, most patients said they couldn’t take Lyrica (32 percent) or Cymbalta (29 percent) due to side effects.

Out of the three, Lyrica seems to work the best, according to our survey respondents, with more than 22 percent of patients saying it reduces their symptoms “somewhat.” Only 7 percent said it helps them “a lot.”

Seventeen percent of patients said Cymbalta helps them “somewhat” compared to only 6 percent who said it reduces symptoms “a lot.”

Savella isn’t as well-known or well-used as Lyrica or Cymbalta, according to our survey. Almost 74 percent of patients said they’d never tried it. Around 5 percent of patients said Savella had either helped their symptoms “a lot” or “somewhat.”

There’s quite a bit of interest in medical marijuana among our respondents. More than 77 percent said they would try (or have tried) medical marijuana if it was legal in their state.

Our employment question gave us another surprising finding. More than 58 percent of respondents said they’re not able to work due to health reasons. Only 21 percent said they are employed full time. These numbers reflect how debilitating fibromyalgia can be.

We expected some of the answers we received.

Almost all of our respondents (95 percent) were female, and well over half were between the ages of 40 and 60.

While we often hear that fibromyalgia patients are getting diagnosed sooner than in years past, our survey found that most patients are still doing the doctor shuffle. More than 67 percent said they visited three or more doctors before finally being diagnosed.

Despite better education and awareness, patients are still struggling to find competent, understanding physicians. Fifty-six percent said they’d been able to find a doctor “who takes [their] condition seriously and gives appropriate treatment,” while 43 percent said they have not.

Awareness does seem to be growing among family and friends. More than 90 percent of respondents said at least some of their family and friends are supportive of their health challenges.

Do you agree with the survey’s findings? What questions should we ask next year? Tell us in the comments section!

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and practical tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Authored by: Donna Gregory Burch

There are 16 comments for this article
  1. Colleen at 1:46 am

    I have other issues (like most of us) besides fibro, CFS, Rare form of thyroid Cancer (Medullary) it’s incurable and I had to have a neck dissection that caused nerve damage and muscle issues (can’t raise my arm anymore and constant pain in trapezoid muscle and shoulder/arm, slipped disc, peripheral neuropathy, arthritis, etc. After my 7 hour neck dissection my Fibro got increasingly worse. Dr. Said it was a major trauma to my body and that it makes sense that my fibro symptoms got worse. I am on morphine sulphate ER, oxycodone, lidocaine patches, and muscle relaxants. I have worked my way up to these after two years. Even all these pain meds I still have pain, yes some days it helps me get out of bed and somewhat function and other days it’s rough to say the least. I have tried Lyrica, cymbalta, neurotin, gabitien, amatriptiline, all having very bad side effects and could no longer take. I did try Ultram (tramadol) and that kinda helped for about 3-4 months and then no help whatsoever ever. I believe ever fibro patient is not the same and my experience it’s a progressive disease (I was diagnosed in 2011) and what I was like then compared to now is night and day. I’m sure in the beginning you believe you have so much pain because you went from no pain to almost everyday dealing with it, after five years and a traumatic surgery I went from 10 to a million. If you haven’t been tested yet I highly recommend it (my insurance covered it and they do help you if it doesn’t) the test is called FM/a and it will give you and your dr. a definitive yes I have fibr result. Here’s the link https://thefibromyalgiatest.com they also will be conducting genetic research in the next 6-12 months.

  2. Cindy at 11:12 am

    I have had Fibromyalgia for a very long time. Honestly I’m not sure when it started. I’m 58, I went on disability at 40. The only thing, and I have been on it all is opiates. That’s it for me. But of course because of the new “guide lines”, I am taking much less and am feeling much worse. My DR. tells me my insurance wont let me have opiates for Fibromyalgia. Luckily (lol) I have other problems. But I can’t tell you what a difference they have made in my life. I want them back. So may people are in so much pain. It makes me sad. I wish that some of these people that created these “guidelines” could live in out body’s for a week or so.

  3. Pingback: What the Research Really Says About Opioids and Fibromyalgia | Health Aid US
  4. Jenni at 5:03 pm

    Living with fibro for 20 years, yes at 50 now many different other issues of come to service in last 3 years. For one after many Medicail opinions I have excepted that I have adult adhd. Once we stared to treat that I was feeling better for about 1.5 years. The different joints in my hand and on elbow stared to deterred. Working with one of the best Ortho s in the State. He minimizes the pain but my strength he said will never be the same in my arms . But I still work through it. I work with my hands so I need the mobility more less. One day at time but I never jump the gun. Any Questions feel free to reach out.

  5. Steve at 11:04 am

    Have to repost and thank all for insightful comments. No one gets it, by and large, but us. Kim’s query about relationships/marriage is also right on. I’ll never meet you folks but I value the sense that we are all in this together.

    As a scientist, I have to point out that I approach surveys and especially research studies and clinical trials with a great deal of skepticism. They intentionally and unintentionally screen in and screen out subjects. Maybe people were too infirm to fill out the survey. I turned down two clinical trials because I had to be off zolpidem and Tramadol for 13 weeks. Right, so maybe those who could do that had mild fibro or they were a lot tougher than I am. Who wants to take risk of possibly being a control subject on placebo for that amount of time? What’s the study retention rate? Lots of variables but the prime thing to keep in mind is that the people running the tests want to sell meds and need them to look good. Do they want to help people…maybe, but their prime legal responsibility is to shareholders if a publicly traded company.

  6. Kim at 5:40 pm

    I have been living with fibromyalgia for many years . I have not been able to tolerate the anticonvulsant / anti seizure meds .Currently i have found muscle relaxers and ultrma to be somewhat helpful . I would be curious to know . How many lost their jobs due to their fibromyalgia like ” job performance, due to the lack of accommodation, or sick days . Also how many coexisting conditions such as vitamin D deficiency, sleep apnea, osteoarthritis, potassium deficiency , autoimmune diseases, etc. How does or did menstruation effect the severity of their symptoms and if gone through menopause. Did it reduce the severity?
    Also how many relationships and marriages ended due to their fibromyalgia?
    I think those questions would be insightful.

  7. Anne F. at 2:16 pm

    Left this out:

    Oddly enough a trial of low dose naltrexone (LDN), a truly promising fibromyalgia treatment is neither required nor even offered in this clinic’s “Comprehensive Fibromyalgia Recovery Program”

  8. Anne F. at 2:13 pm

    The academic medical community as well as many front line clinicians would simply laugh, snicker, or roll their eyes at these survey responses. According to these scientists, most of whom do not have fibromyalgia, opioids simply do not work for fibromyalgia patients. Many state they are contraindicated. What’s the difference between “their” fibromyalgia patients and the ones who read National Pain Report? Is one group more prone to psychiatric symptoms? Are the trials populated by patients with more serious symptoms or those more prone to be refractory to opioids? Are many of the trial patients misdiagnosed with fibromyalgia?……or maybe that’s the case with National Pain Report respondents? I think that one huge factor at play is the fact that recruiting procedures and study design effect outcomes. In other words, your answer (aka outcome) depends on who you ask and how you ask the question (design the study). This is an issue for even the most earnest researchers so it shouldn’t be a surprise that pharmaceutical and medical device manufacturers go to an enormous amount of effort to design research in ways that make desired outcomes more likely. Scary, huh?
    Some clinicians genuinely believe that opioids do not work in fibromyalgia. Others have their own reasons for wanting to minimize opioid use and avoid opioids in fibromyalgia (and other conditions despite the failure of other efforts to control pain.
    A well-known pain clinic in Birmingham, Alabama that uses opioids but heavily favors interventional procedures requires patients affirm that they understand that opioids are not prescribed for fibromyalgia AND attest under penalty of dismissal that they have not been diagnosed with fibromyalgia on their opioid treatment agreement. Patients seeking treatment for pain unrelated to fibromyalgia (this group believes pretty much all pain in a fibro patient is linked to fibromyalgia or exacerbated by the presence of fibromyalgia) must have clear pathology that accounts for symptoms treated by opioid therapy. To even be considered for opioid treatment in the presence of co-occurring fibromyalgia, patients must have pathology that is clearly linked to their pain. They provide examples including:

    chronic pain secondary to healed third degree burns and congenital issues like osteogenesis imperfecta (brittle bone disease that is apparent in childhood)

    It’s the section related to back and neck pain that is the real kicker though…..

    “Patients with back/neck pain whose SYMPTOMS ARE CLEARLY RELATED TO PATHOLOGY and have availed themselves of any suggested surgical treatment and are compliant with interventional procedures and physical therapy will be CONSIDERED for a conservative trial of opioid therapy. Testing such as discography must satisfy the physician that pathology visible on diagnostic scan is a direct cause of pain. Patient must have been on documented program to optimize fibromyalgia symptoms for a minimum of six months that includes:
    completion of intensive pain rehabilitation program specific to fibromyalgia
    active participation in physical therapy and documentation of ongoing attendance
    three times weekly at therapy gym for monitored performance of therapist
    ordered independent exercise program
    participation in ongoing individual/group psychotherapy with assessment for
    addiction risk AND therapist reports patient is at low to moderate risk for
    developing substance use disorder, co-morbid psychiatric conditions are
    being adequately treated, and there is no evidence of factitious
    disorder/malingering/secondary gain issues
    minimum of 10-12 random urine drug screens in preceding 6 months verifying
    patient is not using opioids, benzodiazepines, tramadol,
    cannabis, Kratom, over-the-counter Immodium, or alcohol
    compliance with BPTCC Fibromyalgia Medication Algorithm (specifies titration
    protocol for specific tricyclic antidepressants, SSRI’s, SSNI’s,
    anti-convulsants, atypical antipsychotics and other pharmaceutical agents)
    completion of sleep study and compliance with ALL treatment recommendations
    from sleep study team”

    Are they trying to minimize opioid use by making the process more cumbersome than applying to the Secret Service Academy? How many patients will not qualify due to standards that don’t demonstrate increases safety? How many simply cannot afford “the process” or don’t have transportation so that they can attend this clinic an average of 3 days a week AFTER completing the “intensive functional rehabilitation program” (7 days per week for 4 weeks arriving at 7:30 am)? Yes all this will deter opioid abusers, but how many patients who would have benefited lost out? How many patients would have benefited if their dose had not been limited to 60 morphine equivalents per day?

  9. Stephen Rodrigues, MD at 12:38 pm

    Fibromyalgia is the most complex disease known to mankind. It is caused and result in a bewildering array of overlapping issues: mind, neurotransmitter, electrical, body, cellular, DNA, chromosomal, muscular, spiritual, environmental and societal chaos.

    Using a narrowed treatment will only scratch the surface and frustrate everyone involved.

    This disease is best attacked with a complete set of treatment options to be used in a personalized and tailor made manner. This recipe has evolved over 2 decades:
    The patient must engage in a self-care plan of action with is mandatory to keep the healing fueled and activated. This will speed up, add certainty and predictability to the overall recipe.
    Self massages, aerobic exercise program, i.e. take the stairs and doing floor exercises.
    Take time every day for yourself by relaxing by Tai Chi and/or Yoga. Stretching of the major joint areas. Massage yourself on a daily basis.
    Herbals and Supplements:
    Multivitamins; an A-Z type + B Complex 100 + Vit C 1000mg/d.
    Magnesium Glycinate 400 mg/day by mouth. Epsom Salts baths (the magnesium will be absorbed through the skin), 2 cups per tub of warm water for 10-15 minutes. Trace Elements.
    The patient must avoid:
    Raw simple sugar foods like sweet drinks/sodas. Highly refined starches such as white breads, corn oils, and fat-free snacks. Caffeine >2-3 cups/day and tobacco products. Over the counter sleep aids.

    For your medically trained helpers who can blend all these forces into treatment sessions:
    Hands-on PT options @ 2-3 x per week:
    Massage. Tissue release options. strain and counterstrain. Joint Manipulations. Spray and Stretch.
    Thin intramuscular needling options @ 2-3 x per week:
    Dry needling, GunnIMS, various other “Acupuncture.”
    Hypodermic intramuscular needling options @ 1-2 x per week:
    Wet Needling [50/50 NS/Lidocaine] aka Tender Point Stimulative Needling. Tendon and Ligament Injections.

    The goal is active innate healing process so that these natural forces can to “whittle down” as much of the intramuscular damages so the tissues can rebuild back to a healthier state. This is not a quick fix, it will take 6 to 24 months or up to 2-4 years.

    Unfortunately in the early 90s many venture capitalist, investors and specialist with the AMA’s permission were able to take many of these options out of your insurance plans. Making then out of your reach thus funneling you into taking more toxic meds than needed. Be aware. Try not to short change yourselves. Godspeed.

  10. Tina at 12:19 pm

    Opiates allow me to get out of bed for a few hours each day to get to medical appts, therapy etc and without them the pain would be unbearable. I’ve been unable to tolerate Lyrica, Gabapentin, and other standard fibro meds, that give me increased dark depression, nightmares, and suicidal. I’m 50, have severe fibro, chronic fatigue, DJD, DDD, and others.. Opiates keep life bearable for me. I don’t use Opiates recreationally and never get a high from them. The CDC will be responsible for a tragic increase in suicides if they take pain meds away from patients in need. The increased anxiety about this increases pain and depression.

  11. Zoann Murphy at 9:52 am

    I was glad to see the results of the survey matched my own experiences with fibromyalgia (and I was proud to be one of the survey respondents).

    My suggestions for next year’s survey would include the questions “When were you diagnosed?” and “Have your symptoms increased or gotten worse since you were diagnosed?” I would be very interested to know if, as I suspect, fibromyalgia is a progressive degenerative disease.

  12. Eleanor Drewniak at 7:12 am

    I am thrilled with the results of this survey. As a Fibromyalgia sufferer for 10 years I spent 9 of them trying to find a “formula” that would work for me. Without opioids I would be back in bed full time. Neurotin also helps. I could not take Lyrica or Cymbalta because of side effects. I have not tried medical marijuana. Mild exercise is a must even though it is not easy but I have learned to pace myself. A healthy diet has made a positive difference due to the digestive problems fibro patients often suffer. Your survey supported everything I do to function as normally as possible with a very painful, physically exhausting illness. I certainly support the results 100%.

  13. John at 6:03 am

    My experience is consistent with the findings. Lyrica, Cymbalta and Savella I have been unable to tolerate, at any dose. And that makes sense. For many of us, it is not only perceived pain that is heightened but our response to medication side effects as well.

    I am a 45 yo male with Fibromyalgia since 2012. I worked with three neurologists who could not figure out what to do with me before I found a compassionate rheumatologist with experience in treating Fibromyalgia.

    I have experimented with everything to try to help reduce pain. For me, massage, tai-chi and a warm bath can help, as can high CBD/low THC marijuana during flare-ups, low-dose extended release Hydrocodone, Tramadol and Cyclobenzaprine for sleep. Sounds like a lot but I keep the doses low with the understanding that increasing opioid dosages comes with increased tolerance levels and the knowledge that nothing will completely erase the pain but rather take the edge off and help make the pain more tolerable.

    During flare-ups, I still suffer and I understand how others are unable to work. The only reason I am able to keep a career going is because I work from home and many days, from my bed. Otherwise, I would not be working.

    Hang in there everyone. You are not alone.

  14. Yolanda Tepper at 2:08 pm

    I have been diagnosed with fibromyalgia since 2007, I have tried every drug available for pain that was approved by the FDA including opioid, my conclusion is that the drug Savella and cyclobenzaprine with tramadol works best to keep my pain under control, I am hoping this recommendation helps others.
    God bless

  15. Steve at 11:25 am

    As a 68 y.o. Male with FM for 30 years, I wonder if length of time with the disorder and gender skew surveys unless they’re controlled for. I think that decades have made my symptoms intractable, perhaps because physiological resilience just declines with age. I have failed all of the meds due to side effects, actually before finding if they would become effective after a week. Tramadol has also stopped working for me, putting me in daily pain to where I wonder how to continue. I tried an old Vicodin this week someone had given my wife for dental pain a few years ago,no help. Next will try her an old Percocet from a different surgery of hers. We only have several here, though. The reality is, I”m surprised folks can deal with the side effects from opiates; shortness of breath, even from Tramadol, is scary and unpleasant. I have tried only MJ edibles, after much work making them, and had no success, grossly overdosing in error but with no pain relief. I’m trying myofascial massage and have just ordered an expensive cranial electro therapy stimulation device. If these don’t work, I don’t know how I can stand the pain, which just gets worse.

  16. Nancy at 5:47 am

    The results are very close to what I expected. I think the use of marijuana needs to be researched and made a viable option for patients. Clearly people are looking for an option that is not an opioid. I hope you continue these surveys. Focusing on patients that are unable to obtain treatment and why would be helpful. Also…people who were receiving treatment and no longer can would be helpful to know.
    Good work.