Fibromyalgia

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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, when one cannot focus or pay attention and the patient has difficulty concentrating on mental tasks, is known by FM sufferers as "Fibro Fog". Some experience depression, headaches, and lower abdominal pain or cramping.[1] 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 (IBS). 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.[2][3][4]

FM has a Female/Male 7:1 ratio under the American College of Rheumatology (ACR) 1990 Diagnostic Criteria and 2:1 when the ACR 2010 Preliminary Diagnostic Criteria is used.[5] See: Fibromyalgia (American College of Rheumatology (ACR) Criteria section).

Dr. Jarred Younger has said that many patients that meet the criteria for FM also meet criteria for Chronic Fatigue Syndrome (CFS) but the reverse is not necessarily true as a lot of people with CFS do not have chronic pain.[6] However, the Canadian Consensus Criteria (CCC) requires the symptom of pain to diagnose ME/CFS. It is the pattern and significant degree of chronic pain in FM that sets it apart from other diseases that have pain. (See illustrations.)

FM is the second most common rheumatic disorder behind osteoarthritis and is "now considered to be a lifelong Central nervous system disorder."[7] Sufferers experience "amplified pain that shoots through the body."[8] Dr. Younger believes an overactive immune system is the cause and will be conducting a study to test this hypothesis.[9][10] Dr. William Pridgen's research of HSV-1 (cold sore virus) as being involved in FM 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 FM and has partnered with two universities to offer whole exome sequencing free of charge to those who test positive with their FM/a® test.[11] ProHealth reports that an old Tuberculosis vaccine may be researched for treatment of Fibromyalgia spearheaded by EpicGenetics and Massachusetts General Hospital.[12]

1990 ACR Diagnostic Criteria: 18 Tender Points
2010 ACR Preliminatry Diagnostic Criteria: Wisedpread Pain Index (WPI), 19 Tender Point Areas

Diagnostic criteria and code[edit]

World Health Organization[edit]

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).[13]

United States[edit]

American College of Rheumatology (ACR) Criteria[edit]

Men do not seem to form the tender points needed for diagnosis under the 1990 criteria,[19] the 2010 proposed criteria diagnoses more men with a F/M ratio of 2:1.[20]
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."[21]
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[22]
There are 19 Tender Point Areas, Widespread Pain Index (WPI), whereas the 1990 criteria had 18 Tender Points.[23]
The 2010 Preliminary Diagnostic Criteria has never been officially implemented.

Medical coding[edit]

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

  • 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?"[27] "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."[28] and "with dysphasia will be found to having difficulty in talking, understanding, listening, writing or doing numeral calculations."[29]
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?"[30]
  • Allodynia "Allodynia is pain, generally on the skin, caused by something that wouldn't normally cause pain." [32]
  • 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."[37]

Rheumatology and primary care providers: Diagnosing and treatment[edit]

United States[edit]

Drugs[edit]

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.

United States[edit]

FDA approved[edit]

Side effects[edit]

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.[41] 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.[42]
  • Lyrica (Pregabalin is Generic) is causing weight gain.[43]
  • Savella (Milnacipran is Generic) has a list of side effects.[44]

Off label[edit]

Side effects[edit]

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

Trials[edit]

ASP8062[edit]
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[edit]
2017, Intec Pharma Launches Phase 1 Trial of Cannabinoid-based Therapy for Fibromyalgia, Lower Back Pain.
IMC-1[edit]
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."[45]
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."[46]
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."[47]
Bacille Calmette-Guerin (BCG) vaccine[edit]
To be proposed to FDA, old Tuburculosis vaccine for treatment.[48]

Failed Drug Trials[edit]

TNX-102[edit]
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.[49]
DS-5565[edit]
2017, The Big Hurt: Second Major Fibromyalgia Drug in a Year Fails "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."[50]
2016, Three New Fibromyalgia Drugs Could Be On The Way "Japanese drugmaker Daiichi Sankyo is now testing what could be Lyrica 2.0."[51]

Articles and blogs on drugs[edit]

Sleep study[edit]

  • 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."[53]

Sleep medications[edit]

Disordered sleep is a prominent symptom in FM. There are four types of Sleep Medications used in FM; Antihistamines, Benzodiazepines, Nonbenzodiazepines, Sedating Antidepressants.[55]

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

Therapies[edit]

Exercise[edit]

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

  • 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.[58]
  • Fibromyalgia Myth vs. Fact Heading: Myth #3: People With Fibromyalgia Need More Exercise. Appropriate exercise, which each patient needs to gauge for themselves.

Massage[edit]

Acupuncture[edit]

Disability[edit]

United States[edit]

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.[62]

  • 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.

Examinations and Tests[edit]

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.[63][64][65]

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.[66][67]

Blogs about navigating SSD process[edit]

Ongoing process of diagnosing and categorizing[edit]

  • 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."[71]

Blood tests[edit]

Brain scans[edit]

Notable studies[edit]

Awards and current research[edit]

Psychiatric paradigm[edit]

Hyperbaric oxygen therapy[edit]

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

Other resources[edit]

Controversies[edit]

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.[72]

References[edit]

  1. Fibromyalgia - Mayo Clinic
  2. Fibromyalgia Fact Sheet - CDC
  3. Fibromyalgia - Questions and Answers about Fibromyalgia - NIH
  4. When Fibromyalgia Is More than Pain - ProHealth By Celeste Cooper
  5. Fibromyalgia:Epidemiology - Medscape
  6. Webinar with Jarred Younger, Ph.D.
  7. Fibromyalgia now considered as a lifelong central nervous system disorder NAIDW.org
  8. Fibromyalgia now considered as a lifelong central nervous system disorder - News Medical Source: American Pain Society
  9. New UAB Study Could Radically Change Fibromyalgia Treatment As We Know It - National Pain Report By Donna Gregory Burch
  10. Testing the fibromyalgia immune system with lipopolysaccharide (LPS) - YouTube - May 24, 2017
  11. 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 - Business Wire
  12. Century-old vaccine gives new hope to fibromyalgia community - ProHealth
  13. World Health Organization, International Classification of Diseases - Fibromyalgia M79.7, ICD-10, 2016
  14. 18 Points Used to Diagnose Fibromyalgia - Health.com
  15. Tender Points might no longer be used for diagnosis of Fibromyalgia - Massachusettes CFIDS/ME FM Association
  16. 2011 Modification of 2010 ACR Fibromyalgia Criteria - CelesteCooper.com
  17. Criteria for the diagnosis of fibromyalgia: validation of the modified 2010 preliminary American College of Rheumatology criteria and the development of alternative criteria. - PubMed
  18. 2016 Revisions to the 2010/2011 Fibromyalgia Diagnostic Criteria
  19. How Fibromyalgia Affects Men - WebMD
  20. Fibromyalgia - Epidemiology - Sex-related differences in incidence - Medscape
  21. Tender Points might no longer be used for diagnosis of Fibromyalgia - Tender Points might no longer be used for diagnosis of Fibromyalgia - Massachusettes CFIDS/ME FM Association
  22. Tender Points might no longer be used for diagnosis of Fibromyalgia - The new criteria for FM diagnosis - Massachusettes CFIDS/ME FM Association
  23. Tender Points might no longer be used for diagnosis of Fibromyalgia - Tender Points might no longer be used for diagnosis of Fibromyalgia - Massachusettes CFIDS/ME FM Association
  24. 2015/16 ICD-10-CM Diagnosis Code M79.7
  25. The Health Care Industry Finally Recognizes Fibromyalgia
  26. What is Fibro Fog - Fibromyalgia and Cognitive Dysfunction - Medical.net
  27. Impaired Language in Fibromyalgia & Chronic Fatigue Syndrome - Talking, Reading & Writing
  28. Aphasia - Mayo Clinic
  29. What is Dysphasia?-Ayushveda
  30. Temperature Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome - Very Well By Adrienne Dellwo
  31. Fibromyalgia Tied to Hysterectomy, Gynecologic Disease
  32. Allodynia - about.com definition article
  33. Painful to Touch: Fibromyalgia & Tactile Allodynia - Does Your Skin Hurt? Here's Why!
  34. Chronic Fatigue Syndrome, Fibromyalgia, and Autoimmune Thyroid Disease
  35. Thyroid Disease in Fibromyalgia & Chronic Fatigue Syndrome
  36. Sleep is associated with task-negative brain activity in fibromyalgia participants with comorbid chronic insomnia
  37. Fibromyalgia and Sleep - ProHealth - By: Cort Johnson
  38. Irritable Bowel Syndrome in Fibromyalgia & Chronic Fatigue Syndrome - Why Do They Go Together?
  39. Orthostatic Intolerance - Very Well By: Adrienne Dellwo
  40. Fibromyalgia Symptoms - The Monster List!
  41. Cymbalta Lawsuits - Drug Watch
  42. Eli Lilly Settles Cymbalta Withdrawal Lawsuits - Donna Gregory Burch - National Pain Report - October 6, 2016
  43. Lyrica and Weight Gain - Drugsdb.com
  44. Savella Side Effects - Drugs.com
  45. Through the “Valley of Death”: Dr. Pridgen, Fibromyalgia and the Looming Trials - Simmaron Research By Cort Johnson
  46. Novel Fibromyalgia Treatment Granted FDA Fast Track Designation - Fibromyalgia News Today By Charles Moore
  47. The Pridgen Revolution? Dr. Pridgen on Bringing His Antiviral Approach to Fibromyalgia To Market
  48. Century-old vaccine gives new hope to fibromyalgia community - ProHealth
  49. Potential Fibromyalgia Treatment is Put on Hold - National Pain Report - September 2016
  50. The Big Hurt: Second Major Fibromyalgia Drug in a Year Fails - Health Rising
  51. Three New Fibromyalgia Drugs Could Be On The Way By Donna Gregory Burch
  52. Getting a Sleep Study with Fibromyalgia or Chronic Fatigue Syndrome
  53. What A Sleep Study Can Reveal About Fibromyalgia
  54. Fibromyalgia Sufferers Have Difficulty Maintaining Continuous Sleep, Study Says
  55. Sleep Medications For Fibromyalgia Fibrodaze.com
  56. Warm-Water Exercise for Fibromyalgia - About.com Health FMS/ME/CFS
  57. Exercise in warm water decreases pain and improves cognitive function in middle-aged women with fibromyalgia. - PubMED
  58. Exercising With Fibromyalgia - By Ronenn Roubenoff, MD
  59. Short-term complementary and alternative medicine on quality of life in women with fibromyalgia - JIM, Elsevier, Science Direct
  60. Acupuncture Good for Fibromyalgia? Acupuncture School Online
  61. CMS.gov Regulations and Guidance
  62. SSR 12-2p: Titles II and XVI: Evaluation of Fibromyalgia
  63. Common Misdiagnoses of Fibromyalgia - WebMD
  64. Overlapping and Related Conditions - CFIDS & Fibromyalgia
  65. When Fibromyalgia Is More than Pain - ProHealth By Celeste Cooper
  66. What Is Fibromyalgia? Medscape Readers Weigh In - Medscape By Bret Stetka, MD
  67. Chronic Pain: Does Vitamin D Help? - WebMD By Gina Shaw
  68. Neural signature for fibromyalgia may aid diagnosis, treatment
  69. British Journal of Psychiatry Open Sep 2016, 2 (4) 275-279; DOI: 10.1192/bjpo.bp.115.002808 - Sarah Penfold, Emily St. Denis, Mir Nadeem Mazhar
  70. Is Fibromyalgia a Psychosomatic Illness? Med Student Asks Celeste Cooper
  71. Personality and Fibromyalgia Syndrome
  72. Drug Approved. Is Disease Real? - New York Times


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From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history