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Fibromyalgia Facts

  • The word Fibromyalgia is pronounced:
    Fibromyalgia is pronounced: ​ Fie [like pie] Bro My Al [like the nickname for Albert or Alfred] Juh
  • The word Fibromyalgia means:
    Fibro . . . Fibrous or soft tissues of the body My [Myo] . . . muscles Algia . . . pain Thus, Fibromyalgia literally means pain in the Fibrous or soft tissues and muscles of the body.
  • The common characteristics of Fibromyalgia are:
    Fibromyalgia, (often referred to as Fibro or FM) is a disorder characterized by: ​ * chronic, widespread musculoskeletal pain; * fatigue; * sleep disturbance; * cognitive dysfunction (problems with concentration and memory); * mood dysfunction; * abnormal pain processing within the central nervous system and brain; and, * weakness and stiffness in the muscles, ligaments, tendons, and other soft tissues of the body.
  • Fibromyalgia is a chronic condition:
    There currently is no cure for Fibromyalgia. The pain must be present for at least 3 months despite attempts at treatment.
  • The pain of Fibromyalgia is widespread throughout the body:
    The pain of Fibromyalgia is usually experienced in at least four out of five regions of the body. [1] [1] Frederick Wolfe, Daniel J. Clauw, Mary-Ann Fitzcharles, Don L. Goldenberg, Winfried Häuser, Robert L. Katz, Philip J. Mease, Anthony S. Russell, Irwin Jon Russell, Brian Walitt,2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria,Seminars in Arthritis and Rheumatism,Volume 46, Issue 3, 2016,Pages 319-329,ISSN 0049-0172,https://doi.org/10.1016/j.semarthrit.2016.08.0
  • Common painful areas include:
    The pain of FM is commonly felt around the neck, shoulders, upper back, elbows, lower back, and hip girdle.
  • The most common sypmtoms of Fibromyalgia are:
    There are many symptoms associated with Fibromyalgia. The most common symptoms experienced by all people with Fibromyalgia include but are not limited to: ​ Widespread Pain: Pain is experienced all over the body; above and below the waist and also on the right and left sides of the body. So pain in the left shoulder and neck, and, pain in the right hip and knee qualify as widespread pain. Some pwf experience pain in one or two regions at a time with the pain moving from location to location at varying intervals. Chronic pain: Pain that has lasted for at least 3 months despite all attempts at treatment. Fatigue: This is not merely, “I’m tired and wish I could take a nap.” The fatigue of Fibromyalgia is overwhelming, incapacitating exhaustion. This is an “I can’t think, move, speak, or do anything else besides try to remember to breathe” fatigue. Sleep difficulties: Sleep disorders associated with Fibromyalgia can range from not being able to fall asleep, to frequent waking during the night, to not reaching deep restorative REM sleep level to sleep apnea. Brain fog: Commonly referred to as Fibro Fog. According to the Fibromyalgia Network, one of the oldest Fibromyalgia organizations, people with Fibromyalgia (pwf) have “Trouble concentrating, retaining new information, and word-finding that seriously interfere with everyday function. (People with Fibromyalgia) may be easily distracted. (Fibro Fog) appears to correspond to the severity of pain.” [3] Morning stiffness: This symptom is always listed as “Morning” stiffness. However, many people with Fibro (PWF), will say they experience stiffness throughout the day. As the FibroDiva, this author "becomes stiff simply from sitting for too long, being exposed to cold temperatures such as indoor air conditioning, and upon awakening from a nap or overnight sleeping." Muscle cramping/weakness: people with Fibromyalgia (PWF) experience unexplained muscle cramps and weakness. Digestive disorders: FM Network reports, “Constipation, diarrhea, abdominal pain, gas and bloating, irritable bowel, and nausea represent symptoms found in roughly 40 to 70 percent of fibromyalgia patients. Acid reflux and slowed digestion are also common.” [4] Research is showing and speakers at IPain Summit 2019 pointed out that gastroparesis is on the rise among PWF. Headaches/migraines: The majority of people with FM have either tension or migraine headaches. Balance problems: FM Network says, “Balance confidence is greatly reduced in people with fibromyalgia. Walking patterns are altered and the odds of falling are increased.” [5] Itchy/burning skin: Itchy, hive-like rashes, sensitivity to sunlight, and burning sensations are common among people with Fibromyalgia. [6] ​​ Tingling or numbness: Often people with FM have paresthesia, "a burning or prickling sensation that is usually felt in the hands, arms, legs, or feet, but can also occur in other parts of the body." [7] Hyperalgesia: People with Fibromyalgia (PWF) also have painful tenderness and sensitivity. Allodynia: Pain due to a stimulus that does not normally cause pain. Research has shown “peripheral and central nervous system abnormalities contribute to hyperalgesia and allodynia”. [8] [3] www.fmnetnews.com/fibro-basics/symptoms/common [4] Ibid. [5] Ibid [6] Ibid [7] National Institute of Neurological Disorders and Stroke, www.ninds.nih.gov/disorders/all-disorders/paresthesia-information-page#:~:text=Definition-,Paresthesia%20refers%20to%20a%20burning%20or%20prickling%20sensation%20that%20is,%2C%20skin%20crawling%2C%20or%20itching. [8] Staud R. Peripheral pain mechanisms in chronic widespread pain. Best Pract Res Clin Rheumatol. 2011;25(2):155-164.
  • Words of Pain - Describing Fibromyalgia:
    People with Fibromyalgia are constantly asked to describe their pain. Doctors ask during appointments in order to determine a plan of action for treatment. Physical therapist asks to understand limitations and choose appropriate exercises. Disability adjudicators ask to determine whether activities of daily living are limited enough to warrant ADA accommodations or if the pwf is disabled from employment. ​ ​Below is a listing of some of the words a pwf uses to describe his/her pain. aching, burning, constant, cramping, crawling, crippling, crushing, deep, dull, ​ electrifying, excruciating, gnawing, grinding, intense, itching, ​ needles, numb, piercing, pins, popping, pounding, prickly, ​ pulling radiating, ripping, searing, shocking, shooting, sore, stabbing, stiff, ​splitting, ​ tearing, throbbing, tingling, twitching, vice-like, widespread
  • People with FM have baseline and breakthrough pain
    Forest Tennant, MD, DrPH discusses baseline and breathrough pain in the journal of Practical Pain Management. Dr. Tennant statesL "Baseline pain is the constant, ever-present pain that is consciously perceived be the pain patient." Baseline pain is that level of pain at which a person with Fibromyalgia can preform a minium amount of activities of daily living. "Breakthrough pain is excruciating intensity above the baseline pain." Breakthrough pain is what people with FM are referring to when talking about being in a Flare or Flare Up. https://www.practicalpainmanagement.com/resources/intractable-pain
  • Fibromyalgia is not a self-excluding diagnosis:
    A diagnosis of Fibro doesn't sheild you from developing another pain condition, nor does having a diagnosis of another pain producing condition inhibit you from being diagnosed with Fibromyalgia. Often people with Fibromyalgia have one or more concurrent or cormbid conditions. Due to the individual nature of Fibro, not every person with FM will have any of these comorbid conditions. Some people with Fibromyalgia actually have only Fibromyalgia. For thsoe who do have concomitant conditions, these concurrent conditions inclued, but are not limited to: * Tension and/or Migraine Headaches * Sleep Apnea * Restless Legs Syndrome * Yeast infections * Tendinitis * Bursitis * Gastroparesis * Celiac disease or gluten sensitivity * Lactose intolerance * Irritable Bowel Syndrome * Irritable Bladder Syndrome * Rheumatoid Arthritis * Lupus Erythematous * Chronic Fatigue Syndrome [aka ME] * Multiple chemical sensitivity * Myofascial pain syndrome * Raynaud’s Syndrome * Carpal Tunnel Syndrome * Temporomandibular Joint Disorder * Vulvodynia * Gulf War syndrome [9] [9] Yunus MB.,“The Prevalence of Fibromyalgia in Other Chronic Pain Conditions”,Pain Research and Treatment, V 2012, Article ID 584573, 8 pages, 2012. doi:10.1155/2012/584573
  • Prevalance of Fibromyalgia:
    Fibromyalgia is not some new, fad, rare, exotic disease! Fibromyalgia is not some new fad disease. According the late Dr. Robert Bennet, founder of the Fibromyalgia Information Foundation, and Professor of Medicine at the Oregon Health and Science University (OHSU), Fibromyalgia has been referred to by many names and described throughout history - as far back as the trials of JOB in the bible. [10] Fibro is not some exotic disorder that one has to travel to the far edges of the globe to contract. Fibromyalgia is not rare. Among all chronic pain disorders, FM is one of the most common. Figures vary depending on the source; researcher, treating physician, or advocate, but the stats for the prevalence of Fibromyalgia have been range from 2 to 10% of the global population which translates to about 5-12 million Americans struggling with Fibromyalgia. [11] [12] [13] [10] Lecture during FAME 2001 Chicago. Patient Education Conference presented by the National Fibromyalgia Association (NFA), hosted by The Fibromyalgia Assciation Created for Education and Self-help (FACES, Inc.) [11] www.fmaware.net/fibromyalgia-prevalence [12] www.healthgrades.com/right-care/fibromyalgia/fibromyalgia-facts [13] www.theacpa.org/conditions-treatments/conditions-a-z/fibromyalgia/two-takes-on-fibro/quick-facts-on-fibromyalgia/
  • Causes or Triggers of Fibromyalgia:
    For the longest, the etiology of Fibromyalgia was treated like a "which came first" inquiry. That inquiry was, "which came first, pyschological distress or chronic pain". The implied answer was the person (usually a woman) was suffering from emotional trauma which caused her pain ... meaning the pain was "AIYH" or All In Your Head. Thankfully this line of thinking has changed. To date, research has not pinpointed one specific cause or trigger of Fibromyalgia. The Mayo Clinic reports that the major theories revolving around the etiology or cause/triggers of FM include:​ * Physical Injury * Surgery * Nervous System Abnormalities * Sleep Dysfunction * Infection or Other Medical Illness * Genetics * Idiopathic (symptoms gradually accumulate over time with no single triggering event) * Emotional Trauma [14] [14] www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780
  • Diagnosing Fibromyalgia:
    FM is diagnosed utilizing crietrion established by the American College of Rheumatology (ACR). The ACR has revised, modified and tweaked the criteria to be used to diagnose Fibromyalgia a couple of times since the 1990 research criteria. The 1990 criteria relied heavily on the presence of Tender Points. The last incarnation of the Diagnostic criteria was adopted in 2016. The important thing to know about the 2016 criteria is that Tender Points are no longer an integral component of diagnosis and that having another condition that produces chronic pain does not inhibit a diagnosis of Fibromyalgia. The new ACR diagnostic criteria state: "Fibromyalgia may now be diagnosed ... when all of the following criteria are met: (1) Generalized pain, defined as pain in at least 4 of 5 regions, is present. (2) Symptoms have been present at a similar level for at least 3 months. (3) Widespread pain index (WPI) ≥ 7 and symptom severity scale (SSS) score ≥ 5 OR WPI of 4–6 and SSS score ≥ 9. AND, A diagnosis of fibromyalgia is valid irrespective of other diagnoses. A diagnosis of fibromyalgia does not exclude the presence of other clinically important illnesses. [15] [15] Frederick Wolfe, Daniel J. Clauw, Mary-Ann Fitzcharles, Don L. Goldenberg, Winfried Häuser, Robert L. Katz, Philip J. Mease, Anthony S. Russell, Irwin Jon Russell, Brian Walitt, 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria, Seminars in Arthritis and Rheumatism,Volume 46, Issue 3, 2016, Pages 319-329, ISSN 0049-0172, https://doi.org/10.1016/j.semarthrit.2016.08.0
  • No two people with Fibromyalgia are exactly the same:
    Fibromyalgia is an individual and cyclic disorder in that there is a multitude of secondary symptoms and concurrent conditions that vary from patient to patient. Symptom quantity and quality can vary within the same patient from day to day. According to the American College of Rheumatology (ACR), “The pain and tenderness tend to come and go and move about the body." [16] Don't fall into the "my sister has Fibromyalgia and she's not as bad as you are" Okey Doke. You can not compare one person with Fibromyalgia to another due to its remitting/relasping nature. A treatment option may work for one person but not for another. [16] www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia
  • Treatment Options:
    Due to the individual and cyclic nature of Fibromyalgia, what works for one person with Fibromyalgia may not work for another. What works for one person with Fibromyalgia today may become ineffective next year. Nowadays researchers are saying that primary care physicians are more than qualified to diagnose and adequately treat FM, and, that rheumatologists should merely serve as consultants on a multidisciplinary team including physiatrists, physical therapists, and pain counselors. [17] [18] As a result, many healthcare providers are using the above recommendation as an excuse NOT to deal with people with Fibromyalgia. The most successful treatment protocol for Fibromyalgia is a patient-centered, multimodal, comprehensive team approach addressing FM and all concurrent conditions. Idealistically, this requires that ALL healthcare providers treating a pwf, no matter the condition, would either consult with each other or at least avail themselves of the appointment notes of each other. Treatment modalities include (but are not limited to): 1. Prescription medications to reduce pain levels and improve sleep. The U.S. Food and Drug Administration (FDA) has approved three medications for the development of FM since 2007. Anti-seizure medication was commonly used to relieve symptoms of FM in the past. Many people with Fibromyalgia suffering at the highest level of debilitating pain may be prescribed heavy-duty pain relievers (opioids). Physicians use these medications (opioids) as a last resort after all other prescription and over the counter medications, and, alternative therapies have been tried. [19] As a result of the current opioid crisis, these medications are being withdrawn as a treatment option for people with any type of chronic pain however. 2. Over the Counter [OTC] medications. Some people with Fibromyalgia have found certain Over the Counter medications help reduce pain. [20] 3. Sleep Hygiene. Fibromyalgia-treatment.com reports that "sleep hygiene is a term used to describe a group of lifestyle and behavioral practices that can promote normal, good-quality sleep and lead to improved daytime alertness." [21] Changing or adapting a variety of sleep behaviors might enhance success in reestablishing better sleep. A 2016 study published in the journal Rheumatology suggested that "good sleep hygiene practices should be recommended to patients with FM with non-restorative sleep. [Sleep behaviors] to avoid: stimulants (such as caffeine), large meals and alcohol watching television, listening to the radio, or reading in bed too close to bedtime. [Sleep behaviors to begin practicing include: exercise, available pharmacological treatments, go to bed at the same time every night, get up at the same time each morning, sleep 7 to 8 hours each night, utilize the bed for sleep and sexual intimacy only." [22] 4. Physical therapy, occupational therapy, and physical rehabilitation are used to teach the patient new ways to move to reduce pain and to increase range of motion. The American Physical Therapy Association says, “a physical therapist can help you: Understand and manage your pain, reduce your fatigue, and improve your function and quality of life.” [23]​ ​ 5. Alternative [or Complementary Alternative Medicine (CAM)] therapies, such as: massage, myofascial release, acupuncture, chiropractic, herbal supplements, Tai Chi, and, yoga. Many people with Fibromyalgia have found regular massage therapy sessions a beneficial tool in their pain management toolbox. Massage and Bodywork magazine reported in 2004 that, “Most massage therapists and bodyworkers have seen the effects of fibromyalgia on at least some of their clients' bodies and minds.” [24] Turchaninov, et. al, warns that some massage clients with Fibromyalgia may experience a flare-up of symptoms after the first few sessions. The authors advise that massage therapists use a light touch in the first few sessions, concentrating on the neck, upper back, lower back, and buttocks. They also “recommend the first 10 therapy sessions be conducted over a period of 5 weeks with 2-3 sessions a week. After 3 sessions the authors say that therapists can begin full body massage.” [25] [17] Arnold, L M et al. “Fibromyalgia: management strategies for primary care providers.” International journal of clinical practice vol. 70,2 (2016): 99-112. doi:10.1111/ijcp.12757 [18] Arnold, Lesley M et al. “A framework for fibromyalgia management for primary care providers.” Mayo Clinic proceedings vol. 87,5 (2012): 488-96. doi:10.1016/j.mayocp.2012.02.010 [19]Roie Tzadok, Jacob N. Ablin, "Current and Emerging Pharmacotherapy for Fibromyalgia", Pain Research and Management, vol. 2020, Article ID 6541798, 9 pages, 2020. https://doi.org/10.1155/2020/6541798 [20] www.webmd.com/fibromyalgia/qa/which-overthecounter-pain-relievers-can-help-with-fibromyalgia [21] http://fibromyalgia.techie.org/sleep-hygiene/ [22] Ernest Choy, I137 The Role of Sleep in the Management of Fibromyalgia, Rheumatology, Volume 55, Issue suppl_1, April 2016, Page i27, https://doi.org/10.1093/rheumatology/kew106.001 [23] www.choosept.com/symptomsconditionsdetail/physical-therapy-guide-to-fibromyalgia [24] www.massagetherapy.com/articles/treating-fibromyalgia [25] Ibid
  • Prognosis:
    Fibromyalgia is Life Altering; Often, healthy people will look at people with Fibromyalgia (PWF) and after the obligatory "you look fine to me", interrogate us by asking "what are your secondary gains from having this condition"? No one ever asks, "what are your primary losses from having this condition"? Living with Fibromyalgia is a daily struggle. It is a life sentence of pain, fatigue, sleep dysfunction, abdominal distress, and other conditions. FM is a life sentence of canceled plans, interrupted activities, family role reversals, isolation (either self-imposed due to pain and other sypmtoms, or, outwardly imposed due to disbelief or misunderstanding of the condition), and reduced or completely loss sources of income (jobs) with no hope for parole.
  • Fibromyalgia is an equal opportunity affiliction:
    Verywellhealth.com reports that "around 75%-90% of those diagnosed with fibromyalgia are women of middle age. While the reason for this not entirely clear, sex hormones may play a role in not only the distribution of the disease but the frequency and severity of symptoms." [26] The average age of diagnosis is between 21 and 55, striking during the most productive years of life. Children under the age of 20, seniors over the age of 60 and men have been diagnosed with Fibromyalgia. Fibro has touched all ethnicities and nationalities. Research is growing and reported from a multitiude of countries. There has been no research, however, on the prevalence of Fibro within various occupations. As a First Responder, Law Enforcement Officer disabled by injury related Fibromyalgia, it has always been the concern of Sabrina Johnson (founder/former director of FACES, Inc., author/editor of The Fibro Diva Report and Thoughts In From the Fog) that Fibromyalgia research be conducted in this area. Fibromyalgia knows no racial, gender, occupational, economic, educational, geographical, religious, marital status, or age-related boundaries. As an African American woman, Ms. Johnson has long advocated for increased researched into the pain management disparities and discrimination faced by people of color. [27] [26] www.verywellhealth.com/do-you-have-fibromyalgia-risk-factors-716158 [27] Sabrina Johnson, lecture on Fibromyalgia at the 2004, 2006 and 2007 US HHS, Women of Color Health Summits.
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