Fibromyalgia

With Fibromyalgia (FM/FMS), pain is widespread, on both sides of the body and above and below the waist. Sufferers are fatigued and tired even when sleeping for long periods of time. Sleep is often disrupted by pain. Many FM sufferers have sleep disorders like Sleep apnea and Restless leg syndrome. Cognitive impairment where one cannot focus or pay attention and has difficulty concentrating on mental tasks. Some experience depression, headaches, and lower abdominal pain or cramping. Other symptoms include tingling or numbness in hands and feet, pain in jaw and disorders of the jaw such as Temporomandibular joint disorder (TMJ), and digestive problems like Irritable bowel syndrome. Although diagnosed in people of all ages you are more likely to develop FM as you age. Lupus and Rheumatoid arthritis (RA) are risk factors in developing FM. Car accidents, Post-traumatic stress disorder (PTSD), repetitive injuries, illness such as a viral infection, family history, and obesity have all been linked to FM. Fibromyalgia has a Female/Male 7:1 ratio.

Dr. Jarred Younger has said that many patients that meet the criteria for FM also meet criteria for Chronic Fatigue Syndrome but the reverse is not necessarily true as a lot of people with CFS do not have chronic pain. However, the Canadian Consensus Criteria requires the symptom of pain to diagnose ME/CFS.

It is the pattern and significant degree of chronic pain in Fibromyalgia that sets it apart from other diseases that have pain. (See illustrations.)

Fibromyalgia is the second most common rheumatic disorder behind osteoarthritis and is "now considered to be a lifelong Central nervous system disorder." Sufferers experience "amplified pain that shoots through the body." However, Dr. Jarred Younger believes an overactive immune system is the cause and will be conducting a study to test this hypothesis. Dr. Pridgen's research of HSV-1 (cold sore virus) as being involved in Fibromyalgia and successful Phase I and II clinical trials has led the Food and Drug Administration (FDA) to fast-track his Phase III clinical trials on a combination drug that will suppress this virus and also help with pain. See: Fibromyalgia (Drugs: Trials: IMC-1 section). EpicGenetics has a blood test that is identifying the presence of specific white blood cell abnormalities of patients diagnosed with Fibromyalgia and has partnered with two universities to offer whole exome sequencing to those who test positive with their FM/a® test.



World Health Organization
The World Health Organization (WHO) International Classification of Diseases (ICD) lists Fibromyalgia as a "disease of the musculoskeletal system and connective tissue', under the code M79.7 (WHO ICD-10 2016).

American College of Rheumatology (ACR) Criteria

 * 1990, The American College Of Rheumatology 1990 Criteria For The Classification Of Fibromyalgia "American College of Rheumatology guidelines suggest that people with fibromyalgia have pain in at least 11 of these tender points when a doctor applies a certain amount of pressure."


 * 2010, The 2010 American College of Rheumatology (ACR) Preliminary Diagnostic Criteria for Fibromyalgia: Overview was proposed and modified in 2011 with the modification being validated in 2013 and published in 2014. September of 2016, another revision has been made.


 * Men do not seem to form the tender points needed for diagnosis under the 1990 criteria, the 2010 proposed criteria diagnoses more men with a F/M ratio of 2:1.


 * Tender points were used to diagnose with the 1990 criteria, however "considerable skill is needed to correctly check for a patient’s tender points (i.e., digital palpation that is done with certain amount of applied pressure), yet this technique is not typically taught at most medical schools."


 * The new standards were designed to:


 * eliminate the use of a tender point examination
 * include a severity scale by which to identify and measure characteristic FM symptoms
 * utilize an index by which to rate pain


 * The 2010 preliminary diagnostic criteria has never been officially implemented.

Medical coding

 * 2015, Fibromyalgia M79.7

Other diseases, illnesses and co-morbid medical conditions of fibromyalgia

 * What is Fibro Fog? - Fibromyalgia and Cognitive Dysfunction "Mental confusion along with difficulty in concentration and loss of memory is often termed “fibro fog”".


 * The Difference Between Fibromyalgia Tender Points and Myofascial Trigger Points


 * Impaired Language in Fibromyalgia & Chronic Fatigue Syndrome - Talking, Reading & Writing "How often do you find yourself searching your brain for a simple word that you just can't remember?" "The diagnosis of Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written." and "with dysphasia will be found to having difficulty in talking, understanding, listening, writing or doing numeral calculations."


 * Temperature Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome "When you're exposed to heat, does it feel like you're burning up? Does it seem impossible for you to cool off? Or maybe it's cold that bothers you, chilling you to the bone, leaving you unable to warm up.


 * Or are you one of those people with fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) who is cold all the time, or hot all the time, or alternately hot or cold while out of sync with the environment?"


 * Fibromyalgia is tied to Hysterectomy and Gynecological Disease and Endocrine and Autoimmune Disorders. "Did you have a gynecologic surgery, such as a hysterectomy, in the few years before you developed fibromyalgia?"


 * Allodynia "Allodynia is pain, generally on the skin, caused by something that wouldn't normally cause pain."


 * Painful to Touch: Fibromyalgia & Tactile Allodynia - Does Your Skin Hurt? Here's Why! "It's another one of those fibromyalgia symptoms that just doesn't make sense -- pain, sometimes severe pain, from a simple touch. The closest thing it compares to is having a sunburn all the time. A lot of people don't understand this symptom, including those who have it, because while it's common in fibromyalgia, it's rare in the general population."


 * Thyroid disease - Chronic Fatigue Syndrome, Fibromyalgia, and Autoimmune Thyroid Disease "CFS, FMS and HAIT patients often visit their doctors complaining of a host of symptoms. (See sidebar.) Since symptoms are similar, there is a risk of misdiagnosis. Some doctors still fail to even acknowledge the existence of CFS and FMS."


 * Thyroid Disease in Fibromyalgia & Chronic Fatigue Syndrome "Fibromyalgia and chronic fatigue syndrome are multi-system illnesses. They hit you hard in multiple ways, and confuse doctors of all specialties because not everything can be explained by the one system they focus on."


 * Sleep is associated with task-negative brain activity in fibromyalgia participants with comorbid chronic insomnia. "The present results of this study suggest that long-term, comorbid pain and sleep disturbance may be associated with increased activation in core default mode brain areas that is above and beyond long-term pain disturbance alone."


 * Fibromyalgia and Sleep "Most people with fibromyalgia have an associated sleep disorder that makes it difficult for them to get the deep, restorative sleep they need."


 * Irritable bowel syndrome: Irritable Bowel Syndrome in Fibromyalgia & Chronic Fatigue Syndrome - Why Do They Go Together? "Fibromyalgia, chronic fatigue syndrome and irritable bowel syndrome (IBS) frequently go together. No one really knows why, but we do know that all three conditions can include imbalances of serotonin -- although in fibromyalgia (FMS) and Chronic Fatigue Syndrome (CFS or ME/CFS) it's an imbalance in the brain, while with IBS it's in the gut."


 * Orthostatic intolerance Symptoms Predict the Outcome of Tilt Table Testing in CFS/ME/FM Symptoms can include low blood pressure and/or sudden high blood pressure, dizziness, fainting.


 * Costochondritis is chest and ribcage pain. Costochondritis in Fibromyalgia


 * Fibromyalgia Symptoms - The Monster List! " ...the list of possible symptoms is far-reaching and body-wide."

United States

 * 2012, Mayo Clinic published A Framework for Fibromyalgia Management for Primary Care Providers. Rheumatologists stopped treating Fibromyalgia patients and Primary Care providers began treating although Rheumatologists are most often the specialist to diagnose. (Please see Disability heading about Primary Provider and Specialists for disability cases.)

Drugs
There are approved and off-label drugs for treating FM. ''Please Note: The information under "Drugs" is not meant to promote any Rx drug for Fibromyalgia but to inform you of these drugs both approved and off-label. Always consult your doctor for guidance on Rx drug use for any illness or disease.''

FDA approved

 * Living with Fibromyalgia, Drugs Approved to Manage Pain (FDA For Consumers)


 * Cymbalta (Duloxetine is Generic)


 * Lyrica


 * Savella

Side effects
Not all side effects are listed, review each medication's possible side effects with your doctor.


 * Cymbalta (Duloxetine is Generic) is facing lawsuits due to severe withdrawal symptoms. There is a Facebook group dedicated to questions about the drug and tapering off of it; Cymbalta Hurts Worse. Eli Lilly has settled hundreds of personal injury lawsuits with patients experiencing severe withdrawal symptoms.


 * Lyrica (Pregabalin is Generic) is causing weight gain.


 * Savella (Milnacipran is Generic) has a list of side effects.

Off label

 * Low dose naltrexone: Taken at bedtime for sleep. Helps pain due to better sleep.


 * Gabapentin: Is gabapentin (Neurontin, others) an effective fibromyalgia treatment? Used for pain, sleep.


 * Low dose Quetiapine: Tackling Pain and Depression in Fibromyalgia: Quetiapine Scores Some Benefits in Clinical Trial Taken at bedtime for sleep.


 * Tramadol: For chronic ongoing pain.

Side effects
Not all side effects are listed, review each medication's possible side effects with your doctor.
 * Low dose naltrexone: Insomnia, the drug must be stepped up slowly.
 * Gabapentin: Gabapentin Side Effects
 * Low dose Quetiapine: Weight Gain
 * Tramadol: Having Seizures or Blackouts? The Tramadol Connection

ASP8062

 * 2017, ClinicalTrials.gov A Phase 2a, Randomized, Double-Blind Placebo-controlled, Parallel-group Study to Assess the Analgesic Efficacy and Safety of ASP8062 in Subjects With Fibromyalgia

Cannabinoid-based Therapy

 * 2017, Intec Pharma Launches Phase 1 Trial of Cannabinoid-based Therapy for Fibromyalgia, Lower Back Pain.

IMC-1

 * 2017, Through the “Valley of Death”: Dr. Pridgen, Fibromyalgia and the Looming Trials "First there were the anecdotal reports – FM patients were not just getting better but some, and not just a few, were getting well using something entirely new – an antiviral protocol, of all things, created not by a pain specialist or rheumatologist but by a surgeon."


 * 2016, Novel Fibromyalgia Treatment Granted FDA Fast Track Designation "In the successful Phase II trial in fibromyalgia, IMC-1 was studied to confirm the hypothesis that chronic tissue-resident herpes simplex virus type 1 (HSV-1) may be one of the underlying causes of fibromyalgia and causally related to fibromyalgia symptoms or recurrence. IMC-1 is a novel fixed-dose oral combination antiviral medication designed to suppress this suspected virus and thus alleviate fibromyalgia symptoms."


 * 2016, The Pridgen Revolution? Dr. Pridgen on Bringing His Antiviral Approach to Fibromyalgia To Market "Almost three years ago, Dr. Pridgen threatened to turn the world of fibromyalgia treatment on its head. Few had connected fibromyalgia with viruses or even immune problems when Pridgen announced that a) FM is caused herpes simplex virus reactivation and b) that it could be treated with antivirals."

TNX-102

 * 2016, The drug failed in its primary goal in providing pain relief and Tonix Pharmaceuticals will not be moving forward in developing a Fibromyalgia drug.

DS-5565

 * 2017, "In the three 13-week, double-blind, global, phase 3 ALDAY clinical trials evaluating Mirogabalin for the treatment of pain associated with fibromyalgia, Mirogabalin did not meet the primary efficacy endpoint to demonstrate a statistically significant reduction in the weekly average of worst daily pain score from baseline to Week 13."


 * 2016, Three New Fibromyalgia Drugs Could Be On The Way "Japanese drugmaker Daiichi Sankyo is now testing what could be Lyrica 2.0."

Articles and blogs on drugs

 * Having Seizures or Blackouts? The Tramadol Connection


 * Patients Say Fibromyalgia Drugs Make Things Worse, Rest is Best - Graph of Patient-Rated Drugs - Cure Together Blog


 * Why Your Fibro Meds Aren't Working

Sleep study

 * Getting a Sleep Study with Fibromyalgia or Chronic Fatigue Syndrome "Sleep disorders frequently come along with these conditions, and studies have shown that poor sleep correlates to more severe symptoms, especially FMS pain."


 * What A Sleep Study Can Reveal About Fibromyalgia "Research engineers and sleep medicine specialists from two Michigan universities have joined technical and clinical hands to put innovative quantitative analysis, signal-processing technology and computer algorithms to work in the sleep lab. One of their recent findings is that a new approach to analyzing sleep fragmentation appears to distinguish fibromyalgia patients from healthy controls."


 * Fibromyalgia Sufferers Have Difficulty Maintaining Continuous Sleep, Study Says "A new study published in the Clinical Journal of Pain concludes that people with fibromyalgia have difficulty maintaining continuous sleep as compared to patients with primary insomnia and patients who do not report disturbed sleep."

Sleep medications
Disordered sleep is a prominent symptom in FM. There are four types of Sleep Medications used in FM; Antihistamines, Benzodiazepines, Nonbenzodiazepines, Sedating Antidepressants.

Low dose naltrexone and Low dose Seroquel (see under the heading: Drugs) can also help with sleep when taken at bedtime.

Exercise
Please Note: These recommendations are for Fibromyalgia patients and not ME/CFS sufferers.


 * Warm water exercise is best.


 * Moderate aerobic exercise and weights with as fewer reps possible with a day or two of rest in between. Do not start a program if you are in a flare.


 * Easy Fibromyalgia exercises and motivation to keep you healthy! Videos on YouTube from Eric Suarez, CPT.


 * Fibromyalgia Myth vs. Fact Heading: Myth #3: People With Fibromyalgia Need More Exercise. Appropriate exercise, which each patient needs to gauge for themselves.

Massage

 * 2016, Massage, Rolfing & Other Bodywork - Are They Effective Fibromyalgia & Chronic Fatigue Syndrome Treatments?


 * 2014, Massage Therapy for Fibromyalgia: A Systematic Review and Meta-Analysis of Randomized Controlled Trials

Acupuncture

 * 2016, Short-term complementary and alternative medicine on quality of life in women with fibromyalgia "There was no significant improvement in pain or reduction of tender points in any of the groups studied, at the end of the 8th session."


 * 2016, Acupuncture Does Not Appear to Relieve Pain in Fibromyalgia Patients


 * 2005, Acupuncture Good for Fibromyalgia? "acupuncture gave no significant pain relief to fibromyalgia patients."


 * 2004, U.S. Department of Health and Human Services (HHS) and Centers for Medicare and Medicaid Services (CMS) ruled April 16, 2004, a noncoverage determination for acupuncture.

United States
Please Note: The following is NOT legal advice and it should not be relied upon in taking steps for a disability case. Only Social Security and a Disability Lawyer practicing Disability Law can provide the most up to date and the correct legal avenue for bringing a disability case.''

In the United States, Social Security Insurance and Social Security Disability (SSI) and (SSD) benefits are available for Fibromyalgia. Generally for SSI/SSD, notes and tests from a Primary Provider may be allowed for submission but Specialists such as a Rheumatologist, Neurologist, Psychiatrist, etc. are required for diagnosis, ongoing treatment and completing SSI/SSD paperwork.

Currently, SSD/SSI rely on the 1990 ACR criteria to diagnose Fibromyalgia.


 * Applying for Disability With Fibromyalgia One patient's success of applying, denial, successful appeal, and a breakdown of what SSI/SSD requires for the medical determination of a favorable decision of disability.


 * Fibromyalgia: Policy Interpretation Ruling - Social Security


 * Social Security Disability (SSDI & SSI) for Fibromyalgia - Disability Secrets By NOLO


 * Fibromyalgia Disability Patient Support Forums at MDJunction

Examinations and Tests
For documentation of symptoms and providing proof of a Fibromyalgia (FM) diagnosis, you and your doctor should consider the following examinations and tests:


 * Rheumatologist examination and diagnosis of FM. (Consider having a Rheumatologist order tests and coordinate and order other Specialists' tests and complete the paperwork for Social Security. A Primary Doctor cannot complete disability paperwork but may be able to forward test results.)
 * Routine blood tests for diabetes (fasting sugar, A1C) and a full Thyroid disease panel (TSH, T3, Free T3, T4 and Free T4).
 * Blood tests that rule out RA, Lupus, Lyme disease and other diseases that can share some of the same symptoms of Fibromyalgia and may be treatable.
 * Blood tests for vitamin and mineral deficiencies such as B12 and Vitamin D which are treatable with over the counter supplements and prescription treatments improving fatigue and pain.
 * Sleep study for restless leg syndrome, sleep disturbances and rule out Narcolepsy.
 * An Ear, Nose, and Throat Specialist (ENT) (Otorhinolaryngology) examination and imaging may be ordered for TMJ. (Ear, sinus, throat/lymph infections, and tinnitus can also be documented.)
 * IBS diagnosis which may require blood, upper endoscopy to rule out Celiac disease and fecal tests to check for bacteria (SIBO) and intestinal parasites.
 * Psychiatric evaluation as depression and anxiety can also be treated.
 * Cognitive dysfunction tests.
 * Tilt table test for Orthostatic intolerance.
 * Whole body bone scan to rule out treatable arthritis.

Of course, one can have arthritis, sleep apnea, Chronic lyme disease or other diseases and still have FM, but there may be a treatable condition where a patient's overall health, including their FM, improves.

There have been cases of Vitamin D deficiency being misdiagnosed as Fibromyalgia as a D deficiency can cause pain. Supplementation or prescribed D treatments may alleviate this pain. However, it is possible to have both a D deficiency and Fibromyalgia and correcting the deficiency will only resolve the pain stemming from it.

Blogs about navigating SSD process

 * Resources for getting approved for disability include this Guide to Social Security Disability for People with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, available on the #MEAction website.


 * How Patty’s Lawyer Never Told Her What She Needed to Know


 * Sample Doctor Letters for Disability

Ongoing process of diagnosing and categorizing

 * 2017, Study Reveals New Treatment Target for Fibromyalgia: Inflammation in the Brain


 * 2016, Towards a neurophysiological signature for fibromyalgia. This study has "discovered a brain signature that identifies fibromyalgia sufferers with 93 percent accuracy". (MRI images.)


 * 2016, Diagnosing Fibromyalgia May Be Possible Using Noninvasive Eye Examination


 * 2016, The association between borderline personality disorder, fibromyalgia and chronic fatigue syndrome: systematic review BJ Psych Open states under heading Borderline Personality Disorder in patients with fibromyalgia: " ...there does not appear to be firm and consistent evidence to support the hypothesis that the prevalence of BPD (Borderline Personality Disorder) would be higher in individuals with fibromyalgia compared with the general population."


 * 2016, Microglia in Fibromyalgia & Chronic Fatigue Syndrome


 * 2016, Are Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders?


 * 2016, Why Fibromyalgia Is Neuropathic


 * 2015, Fibromyalgia now considered as a lifelong central nervous system disorder


 * 2015, Foundation of Fibromyalgia Is Altered Central Nervous System, New Study Validates


 * 2015, Evaluation of Antiviral Antibodies against Epstein-Barr Virus and Neurotransmitters in Patients with Fibromyalgia


 * 2015, Question: 'Is Fibromyalgia a Psychosomatic Illness?' Answer: "Fibromyalgia is NOT a psychosomatic illness."


 * 2015, Understanding the Association of Fatigue With Other Symptoms of Fibromyalgia: Development of a Cluster Model


 * 2014, Lyme Disease, Fibromyalgia Link Evaporates (See also: Chronic lyme disease)


 * 2012, Personality and Fibromyalgia Syndrome Conclusion: "No specific fibromyalgia personality is defined but it is proposed that personality is an important filter that modulates a person’s response to psychological stressors. Certain personalities may facilitate translation of these stressors to physiological responses driving the fibromyalgia mechanism."

Blood tests

 * 2017, EpicGenetics, with the Assistance of Leading Medical Centers, Expands Clinical Study of FM/a® Test to Diagnose Fibromyalgia, Identify Genetic Markers Unique to the Disorder and Explore Direct Treatment Approaches


 * 2016, Blood Test for Fibromyalgia: FM/a Test Ⓡ is now available, Q&A


 * 2016, Fibromyalgia blood testing covered by rising number of insurance companies


 * 2015, Cytokine and chemokine profiles in fibromyalgia, rheumatoid arthritis, and systemic lupus erythematosus: a potentially useful tool in differential diagnosis.


 * 2014, Pridgen Reports Fibromyalgia Antiviral Trial Results “Very Positive”: Predicts New Approach Will Be “Game-Changer”


 * 2013, New Fibromyalgia Blood Test is 99% Accurate

Brain scans

 * 2015, Unique Brain Connectivity in Fibromyalgia - Increased Importance Assigned to Pain


 * 2015, The Somatosensory Link in Fibromyalgia: Functional Connectivity of the Primary Somatosensory Cortex Is Altered by Sustained Pain and Is Associated With Clinical/Autonomic Dysfunction (Study with brain images and tables.)


 * 2012, Fibromyalgia and the brain: New clues reveal how pain and therapies are processed


 * 2002, Fibromyalgia Pain Isn't All In Patient's Heads, New Brain Study Finds

Notable studies

 * 2017, Evidence of both systemic inflammation and neuroinflammation in fibromyalgia patients, as assessed by a multiplex protein panel applied to the cerebrospinal fluid and to plasma


 * 2017, Towards a neurophysiological signature for fibromyalgia.


 * 2016, Fibromyalgia syndrome: metabolic and autophagic processes in intermittent cold stress mice.


 * 2016, Fibromyalgia Is Correlated with Retinal Nerve Fiber Layer Thinning


 * 2016, The prevalence of severe fatigue in rheumatic diseases: an international study.


 * 2016, Characteristics of Disturbed Sleep in Patients With Fibromyalgia Compared With Insomnia or With Pain-Free Volunteers


 * 2016, Is Efficacy of Milnacipran in Fibromyalgia Predictable? A Data Mining Analysis of Baseline and Outcome Variables.


 * 2015, Some oxidative and antioxidative parameters and their relationship with clinical symptoms in women with fibromyalgia syndrome


 * 2015, Understanding the Association of Fatigue With Other Symptoms of Fibromyalgia: Development of a Cluster Model


 * 2015, Sleep is associated with task-negative brain activity in fibromyalgia participants with comorbid chronic insomnia


 * 2015, Cognitive performance is related to central sensitization in patients with chronic whiplash-associated disorders and fibromyalgia: a case-control study


 * 2015, Fibromyalgia: A search for markers and their evaluation throughout a treatment


 * 2015, Normalization of aberrant resting state functional connectivity in fibromyalgia patients following a three-month physical exercise therapy


 * 2015, Researchers identify potential sleep-related treatment targets for fibromyalgia


 * 2015, Fibromyalgia has central nervous system origins


 * 2015, The Iceberg Nature of Fibromyalgia Burden: The Clinical and Economic Aspects


 * 2015, The effects of aquatic, isometric strength-stretching and aerobic exercise on physical and psychological parameters of female patients with fibromyalgia syndrome


 * 2012, Dysfunctional endogenous analgesia during exercise in patients with chronic pain: To exercise or not to exercise?


 * 2004, A link between irritable bowel syndrome and fibromyalgia may be related to findings on lactulose breath testing


 * 2002, Fibromyalgia Pain Isn't All In Patient's Heads, New Brain Study Finds

Awards and current research

 * 2016, Chronic pain researchers to expand work with $7.5M award from NIH

Psychiatric paradigm

 * 2016, Explaining unexplained pain to fibromyalgia patients: finding a narrative that is acceptable to patients and provides a rationale for evidence-based interventions


 * 2016, Fibromyalgia: A Short Commentary iMedPub Journals - Journal of Headache & Pain Management - Frederick Wolfe and Brian Walitt


 * 2015, Brain "fog," inflammation and obesity: key aspects of neuropsychiatric disorders improved by luteolin.

Hyperbaric oxygen therapy

 * 2016, Hyperbaric Oxygen Therapy for treating Fibromyalgia: An update An unsuccessful therapy experience by Donna who writes the blog February Stars.


 * 2015, Hyperbaric Oxygen Therapy Can Diminish Fibromyalgia Syndrome


 * Noted in this News Medical article about the research all the women had concussions.

Other resources

 * VOAT: Fibromyalgia
 * About.com Health FMS/ME/CFS

Controversies
Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia, says he has become cynical and discouraged about the diagnosis. He now considers the condition a physical response to stress, depression, and economic and social anxiety.