That is one of the surprise findings in an online survey of over 1,300 fibromyalgia patients conducted by the National Pain Foundation and National Pain Report.  This was the second online survey of pain patients conducted by the National Pain Foundation and National Pain Report. The first survey found that over half of patients worry that they are perceived as “drug addicts” by pharmacists. Eight out of ten said they had stopped seeing a doctor because they felt they were treated poorly.

The FDA has approved only three drugs – Cymbalta, Lyrica and Savella — for the treatment of fibromyalgia. Although they generate billions of dollars in annual sales for Pfizer, Eli Lilly, Forest Laboratories and other drug makers, most who have tried the medications say they don’t work.

“I have personally taken Lyrica back when I was first diagnosed for a year. I can personally attest to the lack of relief from this medication. As a matter of fact my Depression intisifiyed to the ‘nth degree.” -Heidi

The National Institutes of Health estimates that 5 million Americans suffer from fibromyalgia, a poorly understood disorder characterized by deep tissue pain, fatigue, headaches, depression, and lack of sleep. There is no known cure and the disorder is difficult to treat.

Fibromyalgia is devastating for those who must live in its grip. There is much we do not understand. We need innovative ‘out of the box’ solutions that change the face of this disease,” said Dan Bennett, MD, an interventional spine and pain surgical physician in Denver, Colorado, who is chairman of the National Pain Foundation.

Many who responded to the survey said they had tried all three FDA approved drugs.

The prescriptions that are available for treatment have more negative side effects than positive aspects,” said one fibromyalgia sufferer.

I haven’t found anything! Please find a cure or at least a medicine that will take our pain away,” said another.

Asked to rate the effectiveness of Eli Lilly’s Cymbalta (Duloxetine), 60% of those who tried the drug said it did not work for them. Only 8% said it was very effective and 32% said it helps a little.

Among those who tried Pfizer’s Lyrica (Pregabalin), 61% said it did not work at all. Only 10% said it was very effective and 29% said it helps a little.

Asked to rate the effectiveness of Forest Laboratories’ Savella (Milnacipran), 68% of those who said they tried the drug said it didn’t work. Only 10% said it was very effective and 22% said it helps a little.

About 70% of the people who responded to the survey said they had not tried medical marijuana – which is not surprising given that it is still illegal in most states and many countries. But those who have tried marijuana said it was far more effective than any of the FDA-approved drugs.

Sixty-two percent who have tried cannabis said it was very effective at treating their fibromyalgia symptoms. Another 33% said it helped a little and only 5% said it did not help at all.

I’ve found nothing that has worked for me, apart from marijuana,” said one survey respondent.

Nothing but medical marijuana has made the greatest dent in the pain and mental problems,” said another.

Marijuana does help a LOT it numbs the pain. But it doesn’t last long and it makes your brain foggy,” wrote another fibromyalgia sufferer.

Survey respondents said massage, swimming, acupuncture, muscle relaxers and other alternative treatments also helped relieve their symptoms. Many said they take opioids to relieve their pain – although narcotic painkillers are generally not prescribed to treat fibromyalgia.

Other survey findings:

  • Four out of ten (43%) fibromyalgia sufferers feel their physician is not knowledgeable about the disorder.
  • Over a third (35%) feel their physician does not take their fibromyalgia seriously.
  • 45% feel their family and friends do not take their fibromyalgia seriously.
  • Nearly half (49%) said their fibromyalgia symptoms began at a relatively young age (18-34).
  • Only 11% were diagnosed with fibromyalgia within the first year of symptoms.
  • 44% said it took five or more years before they were diagnosed with fibromyalgia.

Many survey respondents lamented that the disorder had taken over their lives, leaving them socially isolated, fatigued and in constant pain.

I was once an active person and have now virtually become a hermit due to this disease,” said one.

The worst thing about having fibromyalgia is disappointing loved ones when I can’t do things with them,” wrote one fibromyalgia sufferer.

Having fibromyalgia is a life sentence. One simply cannot have a productive life living with this disease,” said another.

The 1,339 people who participated in the survey were self-selected as fibromyalgia sufferers. Ninety-six percent of them were female.

Source: National Pain Report


10 Myths and Facts About Fibromyalgia

There’s still a lot that isn’t known about fibromyalgia, which may be why myths about the condition persist.

Fibromyalgia is a chronic disorder of the central nervous system that involves pain throughout the body, as well as fatigue.

Everyone who has fibromyalgia experiences it differently, which is one reason misunderstandings and myths often surround this condition.

Knowing the facts about fibromyalgia — and being able to separate them from myths — is essential to making the best choices to control the condition.

“The more informed and active the patient is, the better off they are in conditions like this,” says Don L. Goldenberg, MD, a rheumatologist and professor emeritus of medicine and nursing at Oregon Health and Science University in Portland. “They really need to get solid medical information.”

Myth #1: It’s All in Your Head

Fact: For people who experience the pain and other symptoms associated with fibromyalgia, the disorder is all too real, says Dr. Goldenberg.

The condition causes “chronic, widespread muscle pain,” he notes. “By the time people see doctors, it’s usually many months or years” since symptoms began.

But many doctors, Goldenberg laments, still don’t understand the condition.

“Most doctors think that if your elbow hurts, or your knee hurts, or your shoulder hurts, the pathology is directly in those areas,” he says. “In fibromyalgia, that doesn’t work. The pain is actually coming from the brain.”

This misunderstanding of the origins of the pain, says Goldenberg, is “one of the reasons it’s very controversial, and was for a long time kind of pooh-poohed as, ‘it’s all in your head.’”

Myth #2: Fibromyalgia Is a ‘Catchall’ Diagnosis

Fact: Fibromyalgia has specific diagnostic criteria, developed by the American College of Rheumatology (ACR).

Many people are under the impression that fibromyalgia is a “catchall” or “fallback” diagnosis because there isn’t any single test or obvious symptom used to diagnose it.

“There’s very little to see on a physical exam,” Goldenberg says. “Laboratory tests are unremarkable.”

According to the ACR, fibromyalgia is diagnosed based on the following factors:

  • Multiple painful areas of the body (on both sides, above and below the waist)
  • Additional symptoms, like fatigue, poor sleep, and difficulty thinking or concentrating
  • Symptoms that last for at least three months
  • No other apparent cause of these symptoms

Myth #3: Fibromyalgia Only Affects Women

Fact: Between 75 and 90 percent of people diagnosed with the disorder are women, according to the National Fibromyalgia Association (NFA).

Fibromyalgia affects about 10 million adults in the United States, the NFA says, which means that between 1 million and 2.5 million men in the United States have been diagnosed with fibromyalgia.

But Goldenberg says that the actual incidence among men may be even higher, since gender-based bias may play a role in how doctors diagnose fibromyalgia.

Myth #4: Fibromyalgia and Arthritis Are the Same Condition

Fact: Fibromyalgia and arthritis have little in common, other than sensations of pain and fatigue.

Unlike arthritis, fibromyalgia “doesn’t primarily affect joints. It affects muscles and soft tissue,” says Goldenberg.

And unlike arthritis and other rheumatic (arthritis-like) disorders, fibromyalgia isn’t a disease characterized by inflammation. In fact, markers of inflammation tend to be normal.

Instead of the pain coming from an inflamed area of the body, in fibromyalgia, “The pain is actually coming from the brain, from the central nervous system,” says Goldenberg.

Myth #5: A Special Fibromyalgia Diet Is Needed

Fact: No specific diet has been shown to reduce fibromyalgia symptoms, according to the National Institutes of Health (NIH).

Instead, you should simply focus on following a healthy, balanced diet that includes whole grains, lean protein sources, low-fat dairy products, fruits and vegetables, and plenty of water.

It’s also a good idea to limit your consumption of caffeine, refined sugars, fried foods, red meat, processed foods, and alcohol.

Myth #6: Complementary and Alternative Treatments Are Pointless

Fact: Meditative movement therapies — such as tai chi, yoga, and qigong — appear to improve fibromyalgia symptoms, according to a review published in January 2013 in the journal Rheumatology International. (1)

In this study, measured improvements were seen in the areas of sleep disruption, fatigue, and depression.

And in a study published in November 2017 in the same journal, a connective tissue massage was found to help with pain, fatigue, and sleep disruption in women with fibromyalgia. (2)

Myth #7: You Should Avoid Exercise

Fact: Exercise is the single most effective treatment for fibromyalgia, according to the American College of Rheumatology.

Aerobic exercise, in particular, has been shown to be helpful in reducing fibromyalgia symptoms. This includes activities like walking, biking, swimming, and water aerobics.

But Goldenberg believes that stretching and strength training are also helpful for many people. Strength training can mean using weights, exercise machines, exercise bands, or your own body weight for resistance.

While exercise may be painful or difficult at first if you have fibromyalgia, regular physical activity can help improve your symptoms and make exercising easier.

Myth #8: You’re Just Tired

Fact: Fatigue in fibromyalgia goes far beyond just being tired. As Goldenberg notes, the condition causes “a tremendous amount of fatigue. People are very exhausted.”

While fatigue is a common symptom of fibromyalgia, an article published in November 2013 in the journal Arthritis Research & Therapy concludes that it doesn’t occur in isolation. (3)

Instead, fatigue in fibromyalgia is interwoven with other symptoms — including pain, sleep disruption, and mood disturbances — and all of these symptoms can influence one another.

Myth #9: You Can Take a Pill to Make Fibromyalgia Symptoms Disappear

Fact: Drug treatments don’t work very well for many people with fibromyalgia.

“The truth is, we don’t have very good medications,” says Goldenberg. “They work well in maybe one out of three or four patients.”

While you may see some benefit from taking a drug approved to treat fibromyalgia, your symptoms will probably just diminish, not disappear.

You’ll probably also still need to incorporate lifestyle measures, like exercise, stress reduction, good sleep habits, and possibly cognitive behavioral therapy (CBT), into your treatment plan.

Myth #10: There’s Nothing You Can Do

Fact: While there’s no cure for fibromyalgia — and medication doesn’t work for everyone — there’s still a wide range of options available for treatment.

“Nonpharmacological approaches actually work as well, or maybe even better,” than drugs for many people with fibromyalgia, Goldenberg notes.

If your current treatment isn’t giving you the relief you need, work with your doctor to try something new, whether it’s exercise, prescription drugs, over-the-counter (OTC) pain relievers, or alternative treatments, like massage or meditative movement

Editorial Sources and Fact-Checking


  1. Langhorst J, Klose P, Dobos GJ, Bernardy K, et al. Efficacy and Safety of Meditative Movement Therapies in Fibromyalgia Syndrome: A Systematic Review and Meta-analysis of Randomized Controlled Trials.Rheumatology International. January 2013.
  2. Celenay ST, Kulunkoglu BA, Yasa ME, et al. A Comparison of the Effects of Exercises Plus Connective Tissue Massage to Exercises Alone in Women With Fibromyalgia Syndrome: A Randomized Controlled Trial. Rheumatology International. November 2017.
  3. Vincent A, Benzo RP, Whipple MO, McAllister SJ, et al. Beyond Pain in Fibromyalgia: Insights Into the Symptom of Fatigue. Arthritis Research & Therapy. November 2013.



Fibromyalgia. National Institute of Arthritis and Musculoskeletal and Skin Diseases.

Fibromyalgia. Mayo Clinic.

Prevalence. National Fibromyalgia Association.

Diagnosis. National Fibromyalgia Association.

Fibromyalgia. Centers for Disease Control and Prevention.

Fibromyalgia. American College of Rheumatology.

Last Updated:2/5/2018

Rheumatoid Arthritis and Fibromyalgia

I am truly learning everyday about these two diseases and I am blown away all the time with the comparisons to myself, there are also things I’ve found that do not necessarily affect me, enforcing the adage “No two Peoples experiences are the same.”

Some of the information I was reading today from an article in an email I receive from everyday HEALTH, really made me wonder…Have these two beasts been lurking within for longer than even I thought? Definitely falls into the “Things that make you go hmmm?” category.

It is of course noted that more Women than Men are affected by both diseases. I did not know that around 30% of the people diagnosed with Rheumatoid Arthritis are also diagnosed with Fibromyalgia either at the same time or within a short time frame thereafter and it may not be in that order. The development of both conditions together is a phenomena known as “Comorbidity”

The most common denominator of the two conditions is PAIN“! Although it does tend to come from different places. To date there are currently no specific diagnostic tests for either Rheumatoid or Fibromyalgia, however Physicians utilize certain criteria to determine each disease, through the process of a physical examination and detailed medical history.

With Rheumatoid Arthritis there are generally more identifiable physical manifestations such as hot swollen red joints especially within the wrists, fingers, ankles and knees.

When diagnosing Fibromyalgia a physician, in addition to obtaining the physical exam and medical history, will also assess pain in 19 different areas known as tender points throughout the body as well as other symptoms like fatigue, problems with thinking and memory (Fibro Fog), as well as a feeling of exhaustion after a nights sleep. Fibromyalgia symptoms have to be experienced for at least three months and can’t be explained by any other health issue.

For patients with Fibromyalgia “everything hurts” and adding in the stress of uncontrolled RA can increase the pain sensitivity a person with Fibromyalgia already experiences. A study published in the Journal of the College of Physicians and Surgeons – Pakistan from 2014 demonstrated that patients with both conditions experience higher perceptions of pain and significantly higher joint disease activity scores, then a patient who has RA alone.

Key difference of the disorders are; RA is characterized by inflammation of the joint lining and can present in physical damage and deformities and can also lead to issues such as scarring of the lungs, neuropathy, and others. A Fibromyalgia patients brain identifies pain in muscles or joints when it shouldn’t (a process known as central sensitization) but doesn’t cause physical issues of joint damage or scarring in the lungs like RA.

Neither disease has a cure, there are definitely Homeopathic and medication treatments available to battle the horrible problems (not everything works for everyone) that can arise. Remember that each disease has to be treated with individual treatment plans and medicinal methods since each disorder is rooted in different body processes (RA Autoimmune and Fibro Central Nervous System) do your research. It is your body and your health you must be proactive. A lesson I am still attempting to master.

Cannabis and Cannabinoids

I want to begin by stating that I am definitely “PRO” Cannabis!!

I’m writing today to share information I discovered regarding a report that was issued by the National Academies of Sciences-Engineering and Medicine on January 12, 2017. Described as one of the most comprehensive studies of research since 1999, at which time the National Academies released the report “Marijuana and Medicine: Assessing the Science Base.”

Utilizing literature databases an extensive search to identify relevant reports and research materials that have been published since the 1999 report was executed, more than 10,000 scientific abstracts were considered. The Committee moved forward based on the abundance of information published addressing Cannabis, the task statement, and other specified study parameters.

The steps involved were determined at the onset by the committee to cover detailed examination of “Health Topics” which demonstrated the most pressing affect to Public Health.

Nearly 100 different research conclusions were organized into 5 categories of the use of Cannabis or Cannabinoid and Health. Ultimately four recommendations outlining research priorities to be included in a research agenda were determined.

  • Addressing current research gaps
  • Identify actionable strategies
  • Highlight potential to improve data collection and enhance surveillance capacity
  • Introduce strategies to plug away at the existing obstacles currently inhibiting Cannabis research

This reports release occurs during a critical period of time for the use and benefits of Cannabis.

I admit my use of cannabis has been a part of life for a long while. So some may say I’m biased, however I know from personal experience that cannabis enables me to be more productive and provides greater pain management than occurs when I take prescription meds by themselves.

I definitely support the Federal re-categorization of marijuana from having no medical value to a position of valued medical benefit. This action would thus encourage study of the benefits derived from consumption of this wonderful plant.

Do not however take my word for it, check it out for yourself and by all means read the full report at


Taking a Shower with Fibromyalgia

Reading this post by Merbear74 reminded me that I am not alone and I am not the only one who struggles with what used to be the everyday

Merbear's World

It’s been five days since I’ve taken a shower.

This will not do.

Although my American Bulldog Maya has been trying to groom me herself, dog spit does not a clean body make. It’s time for me to pull up my big girl britches and get my funky ass in the shower.

I’ll just wait until I finish reading this blog post and savor the last sip of my room temperture coffee.

Shit. Okay, enough stalling. Time to suck it up, Mer.

I sigh loudly for my own benefit and then climb the 14 stairs (thank God for railings) up to the bathroom. I make sure that there’s a semi clean towel available, then I place my shower chair in the bathtub.

It makes bath time lots of fun. (Sorry, Rubber Ducky.)

rubberduckie1970I really miss playing in the bathtub, don’t you?

I take off my clothes and turn the water…

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