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Be a myth-buster: Stop the misconceptions about fibromyalgia

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Some healthcare professionals dismiss the very real, very complex, and very painful condition of fibromyalgia (FM) as a wastebasket diagnosis. And some view FM patients as malingerers—and worse. In such an atmosphere, these patients, about 6 million in the United States, must meet the challenge of coping with extensive pain and fatigue and trying to find adequate treatment for a perplexing condition.

As a nurse, you can help by learning about FM, educating patients and colleagues, and providing patients with supportive, holistic care. (See Fibro­myalgia: Fiction and fact by clicking on the PDF icon above.)

What is fibromyalgia?

FM is a continuum of pain and somatic syndromes that often evades diagnosis and effective treatment. Less than half of the people with FM report adequate relief or improved functional status. Many go years before being properly diagnosed.

The complex symptoms of FM include:

  • widespread pain in all four quadrants (above and below the waist and both sides of the body), including the axial chest and back for three months or more
  • fatigue
  • concentration and memory lapses, called fibro-fog
  • sleep dysfunction
  • muscle stiffness and reduced exercise tolerance
  • increased sensitivity to temperature, light, and sound
  • hyperalgesia (increased sensitivity to painful stimuli)
  • allodynia (increased sensitivity to nonnoxious stimuli).

Patients often describe minor types of touch, such as handshakes and gentle pats on the back, as painful.

FM often exists with other conditions, including chronic fatigue syndrome, myalgic enceph­alopathy, irritable bowel syndrome, migraine headache, multiple chemical sensitivity, depression, and temperomandibular syndrome. FM and these conditions are called central pain syndromes. The symptoms of FM may appear before or after these other central pain syndromes. A patient with any central pain syndrome should be screened for FM.

Subjective and extensive complaints

The symptoms of FM have been known for thousands of years, but the American College of Rheu­matology first announced diagnostic criteria for the condition just 20 years ago. Unfortunately, because FM is so poorly understood, some continue to question its existence, despite the many reports establishing its legitimacy. Patients continue to be dismissed and stigmatized because the condition produces many symptoms but no obvious signs. Most patients with FM appear perfectly normal. And because their complaints are subjective and extensive, clinicians often consider patients to be malingering or seeking drugs.

Experts now agree that FM is a diffuse condition in which abnormal pain (and probably sensory) processing in the central nervous system (CNS) causes symptoms that affect the entire body. The problem is thought to be in the CNS, though peripheral factors—such as muscle, skin, and blood abnormalities—possibly play a role. Patients can have fm which is secondary to other conditions such as rheumatoid arthritis, inflammatory/viral disease, and trauma to the spine.

Psychological and behavioral factors play a role in some people with this condition. Clearly, depression exacerbates pain, and pain exacerbates depression because they share common pathways and neurotransmitters. But despite substantial overlap between depression and FM, most patients with FM aren’t clinically depressed. FM is an independent condition.

What causes fibromyalgia?

The 18 tender points described in so many articles about FM have no anatomic abnormalities. These points are simply areas that are significantly more tender in people with FM. In many well-controlled studies, FM patients have lower pain thresholds everywhere, not just at the 18 tender points.

The abnormal processing of pain in the CNS is thought to result from mechanisms such as central sensitization, blunting of inhibitory pain pathways, changes in neurotransmitters, and psychiatric conditions. The exact mechanisms aren’t known. But studies show that the cerebrospinal fluid (CSF) of those with FM contains three times as much neuropeptide substance P and four times as much nerve growth factor as the CSF of those without FM. Both substances are involved in initiating and perpetuating painful symptoms. Reduced levels of the biogenic amines dopamine, norepinephrine, and serotonin in the spinal cord are thought to impair the effect of endogenous pain-killing endorphins and significantly amplify pain sensitivity.

The sleep patterns of those with FM also suggest underlying physiologic, not psychological, causes. As early as 1975, FM patients undergoing electroencephal­-ography (EEG) showed alpha and delta sleep wave changes, known as alpha-EEG sleep disorder. When healthy control subjects were deprived of sleep to simulate this disorder, they reported muscle pain and fatigue. Alpha-EEG sleep disorder isn’t unique to FM; it occurs in other conditions characterized by chronic nonrestorative sleep, pain, and fatigue, such as rheumatoid arthritis and systemic lupus erythematosus.

FM patients have decreased deep sleep (stage 4 sleep) and bursts of awake-like brain activity, preventing sound sleep. A 2006 study suggests that patients with FM have impaired parasympathetic nervous system activity that prevents re­storative sleep. And chronic, severe sleep dysfunction and pain, of course, perpetuate more sleep dysfunction and pain.

A strong genetic predisposition to FM may exist. Anxiety, depression, physical and psychological trauma, and viral infection may be only contributing factors.

Who does fibromyalgia strike?

FM most commonly strikes middle-aged women. But it also strikes men and children.

The condition appears to be three times more prevalent in women, but it’s likely that a significant number of men with FM are incorrectly diagnosed as having regional pain syndromes such as osteoarthritis. Men with FM typically report fewer symptoms, less fatigue, and fewer tender points than wo­men. Men also have a lower incidence of concurrent irritable bowel syndrome.

Diagnosing fibromyalgia

The hallmark of FM is widespread and chronic pain in all four quadrants of the body and specifically in the axial chest, neck, and back. Marked fatigue, disturbed sleep, and difficulty concentrating compound the pain.

A diagnosis is based on a thorough history, physical examination findings, and tests used to rule out conditions with symptoms similar to those of FM. (See Mimicking fibro­myalgia by clicking on the PDF icon above.) The onset of FM symptoms may be linked to physical trauma. The patient history may reveal that the initial pain of an injury never healed and, in fact, became more widespread.

The physical examination of a patient with widespread pain should include a tender-point examination. A tender-point examination is performed by applying 4kg of pressure (enough to blanche the clinician’s fingertip) to 18 specific areas of the body. In the past, a total of 11 or more tender points was used as a diagnostic criterion. Experts now think that a person with fewer than 11 tender points can have FM because symptoms are cyclical, and the number of tender points and the intensity of pain can vary over time. The criterion of 11 points was established for research trials; it shouldn’t be used as an absolute for diagnosis.

The initial tests should be limited to a complete blood count, chemistry profile, thyroid-stimulating hormone level, Lyme titer, and C-reactive protein level. Depending on the patient’s history and signs and symptoms, a clinician may order an anti­nuclear antibody level and rheu­matoid factor assays. Keep in mind that antinuclear antibody levels are commonly false-positive.

Unfortunately, no test or procedure can confirm the diagnosis: only clinical knowledge and experience can.

Managing fibromyalgia

Treatment is becoming more uniform and progressive, though the success rates are far from ideal. Despite therapy, patients have inadequate pain relief, increased work disability, and increased need for health care. Inadequate response and intolerance to the treatment of FM symptoms cause greater disability and economic concerns.

Because drug therapy produces only limited relief, patients need a multidimensional therapeutic approach. Ideally, a patient with FM receives an early diagnosis and an early start with holistic therapy. Greater awareness of the varied symptoms seen with FM and central pain syndromes is crucial. Remember, a holistic approach includes acknowledging a patient’s pain, regardless of its cause.

Drug therapy for fibromyalgia

Recent studies increasingly support the use of two classes of medications for the treatment of FM. They include serotonin/norepinepherine reuptake inhibitors (SNRI’s) and alpha-2 delta ligands. SNRI’s are thought to help correct the functionally low levels of circulating serotonin and norephinepherine in the CNS, thereby improving the abnormal pain-inhibiting pathways which exist in FM patients. The SNRI’s most commonly used are tricyclic antidepressant amytriptyline (25 mg at bedtime) used with cyclobenzaprine (a muscle relaxant). This combination of medications is well-studied in clinical trials, with modest improvement seen in FM symptoms, particularly sleep quality. Nevertheless, the anticholinergic side effects of these medications make tolerability and adherence a significant problem for patients. (See Examples of drug therapy for fibromyalgia by clicking on the PDF icon above.)

Duloxetine (60-120 mg daily) and Milnacipran (50-100 mg twice daily) are potent SNRI’s recently FDA-approved for the treatment of FM. In clinical trials, these drugs were found to reduce widespread pain, improve mood, and lessen concentration problems with better tolerability than tricyclic medications.

Alpha-2 delta ligands seem to have more of an analgesic effect on FM by reducing the release of neurotransmitters involved in pain processing. By blunting the over-activity of these neuronal synapses, central pain is reduced. Also FDA-approved, Pregabalin (150-225 mg twice daily) was found in clinical trials to reduce pain and improve sleep dysfunction in FM patients.

Gabapentin (1200-2,400 mg/day), while not FDA-approved for FM, is often used for the treatment of neurologic pain syndromes. It is another alpha-2 delta ligand found to reduce pain and improve sleep in clinical trials, but its use is decreasing since the approval of pregabalin.

Drugs for specific symptoms

Antiepileptics can reduce burning pain, especially in patients with migraine headaches; their effects are less predictable for dull and widespread pain. Tramadol hydrochloride (Ultram) disrupts pain messages from the spinal cord to the periphery and increases serotonin and norepinephrine levels. And stimulants such as modafinil (Provigil) ease fatigue and cognitive impairment.

Corticosteroids and nonsteroidal anti-inflammatory drugs (NSAIDs) may be prescribed to treat a concurrent inflammatory condition, such as osteoarthritis or rheumatoid arthritis, or to provide synergistic drug effects. However, NSAIDs aren’t effective as monotherapy for FM. A prescriber should order an opioid only after all other pharmacologic and nonpharmacologic options have failed.

Some patients with FM experience orthostatic palpitations, weakness, or dizziness. Small doses of beta blockers or increased fluid intake and sodium and potassium supplementation can reduce these symptoms.

Keep in mind that adverse effects of and sensitivity to these drugs pose a significant problem of drug intolerance for patients. Severe FM symptoms and desperation convince many patients and their providers to use antidepressants, antiepileptics, and opioids, despite little or no therapeutic effect. Continued failure of multiple (and often costly) treatment regimens commonly frustrates pro­viders and patients alike. As a nurse, you can play a crucial role in reinforcing appropriate dosing regimens, teaching patients about adverse effects, assessing their response to treatments, and following up when prescriptions change.

Adjunctive therapy

Many adjunctive, nonpharmacologic treatments and strategies can improve a patient’s outcome. Part of your role is teaching patients about these other therapies. (See Vagus nerve stimulation for fibromyalgia? by clicking on the PDF icon above.)

The loss of physical function, demands of chronic unexplained illness, and strained personal and work relationships can overwhelm a person struggling to feel better. Accurately identifying the psychological influences on FM symptoms and incorporating the patient’s emotional status into the treatment plan improve outcomes. As with any troubling illness, patients do best with supportive, well-informed providers who can help them cope and remain in control.

The best adjunctive therapies include cognitive behavior therapy (CBT), patient education, low-impact exercise and stretching, and acupuncture. Many patients also use complementary and alternative medicine to treat their symptoms.

Initially developed as a treatment for conditions such as depression and anxiety, CBT is now used for FM with and without drug therapy. In CBT, a patient focuses on understanding his or her condition and using pragmatic coping strategies to improve the emotional and physical response to it. The goals are to function despite pain and disability, eliminate destructive attitudes and behaviors, and adapt a positive mindset. The patient uses CBT to conserve mental and physical energy and minimize pain. The relaxation techniques help effectively manage chronic pain and sleep difficulties. As a nurse, you can teach CBT techniques and work with patients to find effective options that they prefer.

Acupuncture may also alleviate symptoms and improve outcomes. However, a person may need 8 to 10 sessions before this option is effective, and for some, the cost may be prohibitive.

Other adjunctive therapies include electromyography biofeedback, aqua therapy, and hypnotherapy.

Motivating patients to remain active, intellectually busy, and engaged in enjoyable activities also helps. Encourage sleep hygiene strategies, such as establishing consistent bedtimes, taking short naps (less than 15 minutes), pacing physical activity consistently, and avoiding caffeine and alcohol, to minimize sleep dysfunction and fatigue. Any exercise must be gentle, very gradual, and easy on the joints. Be careful not to minimize a patient’s symptoms or assume that any new symptom results from his or her FM.

Be familiar with the results of clinical trials and explain them to patients with FM so they can tailor their regimens to target their symptoms. You can also encourage patients to participate in clinical research trials (www.clinicaltrials.gov). Referring patients to organizations such as The American Fibromyalgia Syndrome Association (www.afsafund.org) and the National Fibro­myal­gia Association (www.fmaware.org) can help them better understand their condition and the latest treatment options.

Just the facts

People with FM suffer from disabling symptoms. They don’t need healthcare providers who think their condition is a mental health issue. To help these patients, learn the facts, dispel the myths and, above all, provide supportive, holistic nursing care.

Selected references

Abeles AM, Pillinger MH, Solitar BM, Abeles M. Narrative review: the pathophysiology of fibromyalgia. Ann Intern Med. 2007;146(10):726-734.

Arnold LM, Hudson JL, Hess EV, et al. Family study of fibromyalgia. Arthritis Rheum. 2004;50:944-952.

Clauw DJ. Fibromyalgia: correcting the misconceptions. J Musculoskel Med. 2003;20:467-472.

Clauw DJ. Fibromyalgia: update on mechanisms and management. J Clin Rheum. 2007;13(2):102-109.

Longley K. Fibromyalgia: aetiology, diagnosis, symptoms, and management. Br J Nurs. 2006;15(13):729-733.

Wallace DJ, Clauw DJ, eds. Fibromyalgia and Other Central Pain Syndromes. Philadelphia, Pa: Lippincott Williams & Wilkins; 2005.

Wolfe F, Ross K, Anderson J, et al. The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum. 1995;38(1):19-28.

For a complete list of selected references, visit www.AmericanNurseToday.com.

Jennifer FitzGibbons, MSN, APN,C, is the Clinical Research Coordinator at the Pain and Fatigue Study Center at the University of Medicine and Dentistry of New Jersey in Newark. The planners and authors of this CNE activity have disclosed no relevant financial relationships with any commercial companies pertaining to this activity.

25 Comments.

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  • I would just like to thank doc Alex for all his help and care… I highly recommend anyone to try him and believe in him it truly honestly works,,he has just cured me of Neurofibromatosis now i am healed and living self Thank u so much for helping me in my time of need.. i will be recommending you to my friends and anyone who needs help in their lives Contact him through his email if you need his help drmolemenspiritualtemple@gmail. com or call him on +2347036013351

  • I would just like to thank doc Alex for all his help and care… I highly recommend anyone to try him and believe in him it truly honestly works,,he has just cured me of Neurofibromatosis now i am healed and living self Thank u so much for helping me in my time of need.. i will be recommending you to my friends and anyone who needs help in their lives Contact him through his email if you need his help @gmail.com or call him on +2347036013351

  • As a nurse, massage therapist, and FM patient, I encountered many closed-minded, self-righteous health care “professionals” who treated me to their ignorant opinions about my condition. I wouldn’t wish FM on anyone, but if experiencing it first hand is what it takes for a nurse to have true compassion for patients with pain syndromes, then I wish them all the “best.” I am grateful to have had the very best in holistic treatment for my FM, and have had no symptoms for nearly six years.

  • As a nurse and a fibromyalgia patient, I was fortunate to be diagnosed by one of the top researchers in the field. It was a relief to find out that many of the symptoms I had had for years (light sensitivity, clumsiness) were part of the syndrome. The medication I take enables me to have a normal life, but if I get off of it, life becomes almost unbearable. I am thankful for physicians who take this disease seriously.

  • Thank you for this informative article. Like so many syndromes that science has yet to fully understand, the nursing and medical community often has those practitioners who display prejudice in their hearts. For the person who posted on June 25, 2011 12:26 am and called Fibromyalgia “balony”,please recall that it was not so long ago that the medical community taught that all people with asthma were faking to get attention. We now know that is untrue. Shame, shame on those who harbor prejucice

  • Sorry, but this still smells like baloney. I will treat my patients with kindness but have a hard time buying into any syndrome which is not empirically demonstrable. Excuse me please if I refuse to enable self defeating behavior!

  • It seems that I have more and more patients with FM – and you are correct it is poorly understood and it is difficult for others to sometimes understand the symptoms. So many of my patients are searching for alternatives to traditonal medications, thanks for including these.

  • Great article, very informative. My husband has FM subsequent to service in the Gulf War. It took him more than 10 years to get a diagnosis and another 5 years to get an effective treatment regiem. Thankfully, most MDs are now more accepting of FM as an actual disease though this is certainly not universal.

  • Thank you for the excellent article about fibromyalgia and even more so for the advocacy for people suffering who often feel dismissed by many in the healthcare system. Please do however, consider Dr. St Amand’s guaifenesin protocal which actually reverses the disease process and brings people back to health. It is true and not a gimic and research is in progress to sustantiate his work. Go to fibromyalgiatreatment.com for more information.

  • HAPPYNURSE5649
    April 11, 2011 12:11 am

    I read and truly enjoyed this article. I am a sufferer of FM for many years, I am blessed to have to pain specialist who treats and believes me. We went through so many meds, my system was very non-tolerant of them, I am currently taking an opoid that manages FM, but not totally. I have found that walking and other outside therapies can help. My family just recently accepted FM for me after 6 yrs. I took my spouse to my therapist, and he spread the word to the rest of the family.

  • I read an article that suggests yoga (as tolerated) as a good adjunctive therapy. Also, meditation improves mood and decreases pain levels. Doctors who are studying this disease don’t regard this as a mental issue; they truly believe that their patients are suffering from a physical disease. It’s a shame that there aren’t more chronic fatigue/fibromyalgia specialists out there, because they’re definitely needed. Patients and others can go to http://www.endfatigue.com. Dr. T can help!

  • Many fibromyalgia patients find great relief with cannabis. Research on the newly discovered endocannabinoid system (ECS)indicates that fibromyalgia may be a result of a deficiency in this system. In other words our ECS may need a supplement (cannabis)to prevent this and other conditions from developing. Learn more about the ECS and cannabis at http://www.medicalcannabis.com.

  • I don’t see a problem in the nursing community accepting the diagnosis of FM but I see a big problem with the medical community not believing in the FM diagnosis.

  • Thank you for this informative article. As an FM patient and a nurse I agree that the nursing community needs educated about this condition. I will always remember the leadership of a former employer mocking my FM (from the COO on down to my supervisor)in a Magnet designated Hospital. Shameful. As nurses we should not “eat our young” or our vulnerable. We must care for each other or our profession will never progress.

  • I appreciate this article I have hide the fact that I have FM because I am a psychiatrist and heard my colleagues comments on “malingering.” Also not everyone can take an antidepressant. Some individuals have concurrent diagnosis of Bipolar Disorder which makes SSRI or SNRI contraindicated. Suboxone has been very helpful for me. Also being active and keeping “strong” not giving in to the disease!

  • As a HCW and FM pt, I too have had difficulty adjusting to the diagnosis and debilitating symptoms. I hear other staff ridiculing pt’s with FM and balking at the treatments prescribed and I am fearful that they may not want to care for me when I need it. We avoid sharing the pain and loss of relationships because of fear of rejection and loss of employement. It is still a big secret that has to be hidden in the workplace. It is unfortunate and a lonely place to be. Thanks for printing the info.

  • TravelerOBRN
    April 10, 2010 2:02 am

    As a nurse and FM patient I greatly appreciate this article. Many of my peers and personal doctors continue to question the validity of FM and this article provides me with info to share with them. Thank you!!

  • I use to be one that rolled my eye when patients came into my place of practice with Dx of FM. I now have it and can relate but there is still alot of education that needs to be done with healthcare professionals on this. It really effects every part of one’s life. I think because of it I have become a better nurse!

  • Mary, thanks for pointing out the unclear language included on page 4 in the medication table where Flexeril is included in the drug classifications as one of the tricyclic meds.
    Thanks Josie for clarifying the text area, which is correctly stated.

  • To Mary NP – the article DOES correctly state that the … “SNRI’s most commonly used are tricyclic antidepressant amytriptyline (25 mg at bedtime) used with cyclobenzaprine (a muscle relaxant).” … maybe read the article more closely before condemning the ANA.

  • Please check your drug listings more carefully. cyclobenzaprine (Flexeril) is not a tricyclic antidepressant it is a muscle relaxant. Readers deserve correct information from the ANA.

  • I was diagnosed with a ” flu like illness” 33 years ago. The formal diagnosis of FM was not made until 1986.This article has accurately represented many of the symptoms of FM. Nurses can best help with careful understanding of the symptomatology as well as the treatments. It is important to point out that what is helpful to one may not help to someone else. I have also found that to remove blame is key. “This is not your fault.” FM is what you have not who you are .

  • I was diagnosed 13 yrs ago and have found Ultram 50mg in am and Amitryptyline 25mg @ HS w/heat for achiness 3-4x daily to keep me @ least able to function most days. I still wk as a nurse educator but only part time.

  • I was diagnosed with fibromyalgia in 1995. Symptoms were complicated by diabetes and severe osteoarthritis. Have done well with exercise, capsaicin oint., occasional tylenol and a combo of Zoloft & nortriptyline low dose. The older I get the symptoms I have developed, especially in decreased ability to exercise, memory lapses, fatigue. Just retired after 32 yr as an RN, 27 yr as Adult NP.Constantly work on my computer for classes, cont.educ, new FM info,
    lots of puzzles and reading.

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