Fibromyalgia

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

Fibromyalgia (FM/FMS) is the second most common rheumatic disorder behind osteoarthritis and is "now considered to be a lifelong Central nervous system disorder."[1] Sufferers experience "amplified pain that shoots through the body."[2]

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.[3] 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.[4] Fibromyalgia has a F/M 7:1 ratio.[5]

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.[6]

1990 ACR Diagnostic Criteria: 18 Tender Points
2010 ACR Preliminatry Diagnostic Criteria: Wisedpread Pain Index

Diagnostic criteria and code[edit | edit source]

World Health Organization[edit | edit source]

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).[7]

United States[edit | edit source]

American College of Rheumatology (ACR) Criteria[edit | edit source]

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."[13]
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[14]
The 2010 preliminary diagnostic criteria has never been officially implemented.

Medical coding[edit | edit source]

Other diseases, illnesses and co-morbids of fibromyalgia[edit | edit source]

  • 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?"[18] "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."[19] and "with dysphasia will be found to having difficulty in talking, understanding, listening, writing or doing numeral calculations."[20]
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?"[21]
  • Allodynia "Allodynia is pain, generally on the skin, caused by something that wouldn't normally cause pain." [23]
  • 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."[28]

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

United States[edit | edit source]

Drugs[edit | edit source]

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 | edit source]

Food and Drug Administration (FDA) approved[edit | edit source]

Side effects[edit | edit source]

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.[32] 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.[33]
  • Lyrica, (Pregabalin is Generic) is causing weight gain.[34]
  • Savella (Milnacipran is Generic) has a list of side effects.[35]

Off label[edit | edit source]

Side effects[edit | edit source]

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

Trials[edit | edit source]

  • IMC-1: 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."[36]
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."[37]
  • TNX-102: TNX-102 SL for Fibromyalgia "... designed to increase the probability that a patient will have a night of restful sleep, which Tonix believes will provide broad symptom relief."[38] The drug failed in its primary goal in providing pain relief and Tonix Pharmaceuticals will not be moving forward in developing a Fibromyalgia drug.[39]

Articles and blogs on drugs[edit | edit source]

Sleep study[edit | edit source]

  • 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."[42]

Sleep medications[edit | edit source]

Disordered sleep is a prominent symptom in FM. There are four types of Sleep Medications used in FM; Antihistamines, Benzodiazepines, Nonbenzodiazepines, Sedating Antidepressants.[44]

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

Therapies[edit | edit source]

Exercise[edit | edit source]

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.[47]
  • 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 | edit source]

Acupuncture[edit | edit source]

Disability[edit | edit source]

United States[edit | edit source]

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 US, 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.

Examination and tests[edit | edit source]

For documentation of symptoms and providing proof of Fibromyalgia (FM), you may want to have results from the following tests:

  • Rheumatologist examination and diagnosis of FM. (It would be best to have a Rheumatologist order tests and coordinate the paperwork from tests done by other specialists as a Primary doctor cannot complete disability paperwork although may be able to forward test results.)
  • Sleep study for restless leg syndrome, sleep disturbances and rule out Narcolepsy.
  • An Ear, Nose, and Throat Specialist (ENT) examination and imaging may be ordered for TMJ. (Ear, sinus, and throat/lymph infections can also be documented.)
  • Blood tests that rule out RA, Lupus and other diseases that can have the same symptoms of Fibromyalgia and may be treatable.
  • IBS diagnosis which may require blood, upper endoscopy to rule out Celiac disease and fecal tests to check for bacteria and parasites.
  • Psychiatric testing to evaluate depression and anxiety which can also be treated.

Of course, one can have Narcolepsy, depression or Celiac disease and still have FM, but there may be a treatable condition where a patient's overall condition, including FM, improves.

You may be required to see a specialist assigned by the SSA/SSD for cognitive testing. Even if you already have had cognitive testing they may still require you to see their specialist.

These tests will be accepted and reviewed but are not a validation of one being disabled. They will be considered as part of the picture of an FM diagnosis.

Ongoing process of diagnosing and categorizing[edit | edit source]

  • 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."[54]

Blood tests[edit | edit source]

Brain scans[edit | edit source]

Notable studies[edit | edit source]

Awards and current research[edit | edit source]

Psychiatric paradigm[edit | edit source]

Hyperbaric oxygen therapy[edit | edit source]

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

Other resources[edit | edit source]

Controversies[edit | edit source]

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.[55]

References[edit | edit source]

  1. Fibromyalgia now considered as a lifelong central nervous system disorder NAIDW.org
  2. Fibromyalgia now considered as a lifelong central nervous system disorder - News Medical Source: American Pain Society
  3. Fibromyalgia - Mayo Clinic
  4. Fibromyalgia Fact Sheet - CDC
  5. Fibromyalgia:Epidemiology - Medscape
  6. Webinar with Jarred Younger, Ph.D.
  7. World Health Organisation, International Classification of Diseases - Fibromyalgia M79.7, ICD-10, 2016
  8. 18 Points Used to Diagnose Fibromyalgia - Health.com
  9. Tender Points might no longer be used for diagnosis of Fibromyalgia - Massachusettes CFIDS/ME FM Association
  10. 2011 Modification of 2010 ACR Fibromyalgia Criteria - CelesteCooper.com
  11. Criteria for the diagnosis of fibromyalgia: validation of the modified 2010 preliminary American College of Rheumatology criteria and the development of alternative criteria. - PubMed
  12. 2016 Revisions to the 2010/2011 Fibromyalgia Diagnostic Criteria
  13. 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
  14. Tender Points might no longer be used for diagnosis of Fibromyalgia - The new criteria for FM diagnosis - Massachusettes CFIDS/ME FM Association
  15. 2015/16 ICD-10-CM Diagnosis Code M79.7
  16. The Health Care Industry Finally Recognizes Fibromyalgia
  17. What is Firbo Fog - Fibromyalgia and Cognitive Dysfunction - Medical.net
  18. Impaired Language in Fibromyalgia & Chronic Fatigue Syndrome - Talking, Reading & Writing
  19. Aphasia - Mayo Clinic
  20. What is Dysphasia?-Ayushveda
  21. Temperature Sensitivity in Fibromyalgia & Chronic Fatigue Syndrome - Very Well By Adrienne Dellwo
  22. Fibromyalgia Tied to Hysterectomy, Gynecologic Disease
  23. Allodynia - about.com definition article
  24. Painful to Touch: Fibromyalgia & Tactile Allodynia - Does Your Skin Hurt? Here's Why!
  25. Chronic Fatigue Syndrome, Fibromyalgia, and Autoimmune Thyroid Disease
  26. Thyroid Disease in Fibromyalgia & Chronic Fatigue Syndrome
  27. Sleep is associated with task-negative brain activity in fibromyalgia participants with comorbid chronic insomnia
  28. Fibromyalgia and Sleep - ProHealth - By: Cort Johnson
  29. Irritable Bowel Syndrome in Fibromyalgia & Chronic Fatigue Syndrome - Why Do They Go Together?
  30. Orthostatic Intolerance - Very Well By: Adrienne Dellwo
  31. Fibromyalgia Symptoms - The Monster List!
  32. Cymbalta Lawsuits - Drug Watch
  33. Eli Lilly Settles Cymbalta Withdrawal Lawsuits - Donna Gregory Burch - National Pain Report - October 6, 2016
  34. Lyrica and Weight Gain - Drugsdb.com
  35. Savella Side Effects - Drugs.com
  36. Novel Fibromyalgia Treatment Granted FDA Fast Track Designation - Fibromyalgia News Today By Charles Moore
  37. The Pridgen Revolution? Dr. Pridgen on Bringing His Antiviral Approach to Fibromyalgia To Market
  38. TNX-102 SL for Fibromyalgia - Tonix Pharmaceuticals
  39. Potential Fibromyalgia Treatment is Put on Hold - National Pain Report - September 2016
  40. Three New Fibromyalgia Drugs Could Be On The Way By Donna Gregory Burch
  41. Getting a Sleep Study with Fibromyalgia or Chronic Fatigue Syndrome
  42. What A Sleep Study Can Reveal About Fibromyalgia
  43. Fibromyalgia Sufferers Have Difficulty Maintaining Continuous Sleep, Study Says
  44. Sleep Medications For Fibromyalgia Fibrodaze.com
  45. Warm-Water Exercise for Fibromyalgia - About.com Health FMS/ME/CFS
  46. Exercise in warm water decreases pain and improves cognitive function in middle-aged women with fibromyalgia. - PubMED
  47. Exercising With Fibromyalgia - By Ronenn Roubenoff, MD
  48. Short-term complementary and alternative medicine on quality of life in women with fibromyalgia - JIM, Elsevier, Science Direct
  49. Acupuncture Good for Fibromyalgia? Acupuncture School Online
  50. CMS.gov Regulations and Guidance
  51. Neural signature for fibromyalgia may aid diagnosis, treatment
  52. 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
  53. Is Fibromyalgia a Psychosomatic Illness? Med Student Asks Celeste Cooper
  54. Personality and Fibromyalgia Syndrome
  55. Drug Approved. Is Disease Real? - New York Times