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BHC Getting the Right Diagnosis 2018

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ME/CFS and FM present as complicated illnesses and getting the right diagnosis can be challenging or seem like an impossibility. Learn how to distinguish between these two diseases and recognize other conditions that may play a role in illness presentation.

Compassionate patient care is at the heart of what we do.
We set the standard for excellence in patient care through early diagnosis and evidence-based precision medicine. We reject the current healthcare system’s model of 10 minute visits. That doesn’t work for our patients. Our patient care is methodical, in-depth and allows us to really understand an individual and their illness.

We are a 501 c(3) dedicated to improving the lives of those that suffer from these devastating diseases.

Visit Batemanhornecenter.org to learn more.

Published in: Health & Medicine
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BHC Getting the Right Diagnosis 2018

  1. 1. FATIGUE Mental Health Grief Depression of all types Anxiety disorders Bipolar disorder Psychotic illness Alcohol and drug abuse Eating disorders Medications Deconditioning Being stressed Exhausted and run-down Poor sleep HPA-axis dysregulation Poor nutrition Chronic pain Medical Illness Neurologic—MS, Parkinsons, dementia, stroke, sleep apnea, stimulant withdrawal Malignant---active/metastatic, treatment Autoimmune/inflammatory---rheumatoid arthritis, lupus, allergies Infections---sinusitis, pneumonia, kidney, mono, STD/PID Cardiopulmonary—CHF (inadequate pump) CAD (muscle ischemia), arrhythmia, COPD Metabolic---anemia, vitamin deficiencies, hypoxemia, obesity, low sodium, Endocrine/hormone---menopause, low testosterone, hypothyroidism, diabetes, adrenal insufficiency, Cushings disease, pregnancy MEDS: antihistamine, cardiac, cholesterol, hormones, many others FM– central sensitivity syndrome, hyperalgesia ME/CFS– global dysfunction and activity intolerance AGE related fatigueWhat % of fatigue is CFS? What % of fatigue is MH vs Medical disease??
  2. 2. Medical conditions that may cause chronic fatigue or widespread pain: Medication side effects Nutritional deficiencies • B vitamins. Vitamin D. Chronic active infection • Hepatitis B or C, HIV, TB • Lyme disease • Sinusitis Cancer, primary and recurrent Cancer treatments---chemo, radiation, hormonal Obesity, severe Primary sleep disorders: restless legs, apneas Allergies, mast cell disorders Cardiopulmonary disease PFO (patent foramen ovale) Cardiomyopathy Pulmonary hypertension Orthostatic hypotension, POTS Chronic autoimmune or inflammatory diseases • Lupus, Polymyalgia Rheumatica • Sjogrens syndrome • Celiac disease • Ehlers Danlos Syndrome (EDS) Neurological Diseases • Neuroinflammatory disorders (multiple sclerosis, Parkinson’s disease, Alzheimers…) • Peripheral or poly-neuropathies • Autonomic nervous system disorders Endocrine conditions • Thyroid disorders • Hyperparathyroidism • Menopause, female or male • HPA-axis disorders Statin-induced myopathy 3
  3. 3. Making a diagnosis of fibromyalgia 4 FM
  4. 4. 5 FM feels like… We use red pen to communicate pain "See" and "hear" with a pain diagram
  5. 5. 6 Headache Shoulders Back IBS Legs Feet Arms Chest Hands Neck Or… like this. Low back Neck Shoulders Face or TMJ
  6. 6. FIBROMYALGIA IS NOT PRIMARILY A MUSCULOSKELETAL DISORDER FM is a nervous system disorder that creates musculoskeletal pain, along with global pain amplification, physical and mental fatigue. FM might be considered a neuroimmune or neuroinflammatory condition in the future. FM The exact cause(s) of FM---still unclear. 7
  7. 7. Chronic widespread amplified pain and other sensory signals between the body, the spinal cord and the brain (the central nervous system) FIBROMYALGIA IS CHARACTERIZED BY: Hyperalgesia---amplified pain. Allodynia---the sensation of pain from a milder stimulus, such as touch or pressure. 8
  8. 8. Fibromyalgia Diagnostic Criteria (ACR* 1990) Chronic (>3 months) Widespread Pain (pain involving 4 quadrants of body & the spine) Tenderness (>11/18 tender points) PAIN amplification results in: »stiffness, achiness, sharp shooting pains… »muscles, joints, bowel, bladder, pelvis, chest, head… »tingling and numbness…light and sound sensitivity…etc FATIGUE, BRAIN FOG and SLEEP disturbances are described in Wolfe et al but not required. 9 Wolfe F, et al. The *American College of Rheumatology 1990 criteria for the classification of fibromyalgia: report of the Multicenter Criteria Committee. Arthritis Rheum 1990;33:160–72. Not just low back pain
  9. 9. FM is a generalized pain condition that involves four quadrants of the body and the spine 10
  10. 10. The 1990 ACR FM Criteria also require presence of at least 11 of the 18 TENDER POINTS (9 pairs)
  11. 11. USE CHARTS TO EXPLAIN YOUR IDEAS 2% of all adults 12 3-4% of adult women 0.5-1% of adult men The prevalence and characteristics of fibromyalgia in the general population. Arthritis Rheum. 1995 Jan;38(1):19-28. Wolfe F, et al.
  12. 12. Awareness of FM skyrocketed after use of gabapentin for pain and subsequent FDA approval of 3 FM drugs Neurontin/gabapentin-- 2004 (never FDA approved for FM) The pharmaceutical company, Pfizer, was fined $430 million by the FDA for off-label marketing of the anti-seizure drug. The unprecedented fine came after promotion for “unapproved uses” including migraines and chronic pain (doctors discovered that gabapentin worked for “nervous system” pain!) Lyrica/pregabalin-- 2007 (Pfizer) Cymbalta/duloxetine– 2008 (Eli-Lilly) Savella/milnacipran– 2009 (Forest/Cypress)
  13. 13. $ millions were spent by 3 pharmaceutical companies To educate the PUBLIC and PRIMARY CARE PROVIDERS about FM from 2007-2012. FM became a household word. 14
  14. 14. Dr. Oz: July 23, 2013 The Disease Doctors Miss Most: Fibromyalgia 15
  15. 15. $ millions were spent by 3 pharmaceutical companies 16 1) Widespread Pain Index (WPI) See diagram (0-19 points) 7+ or 3-6 2) Symptom Score (SS): 0=none, 1=mild, 2=mod, 3=severe a. Chronic fatigue (0-3) Unrefreshing sleep (0-3) Cognitive complaints (0-3) b. Multisystem complaints (0-3) Max SS = 12 5+ and 9+ > 3 months in duration and without other explanation FM FM Alternate “new” FM Diagnostic Criteria (ACR* 2010) Wolf F, et al. The American College of Rheumatology* Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. Arthritis Care & Research. Vol. 62, No. 5, May 2010, pp 600–610
  16. 16. Alternate “new” FM Diagnostic Criteria Part 1: WPI (widespread pain index) 19 pain areas pain17
  17. 17. $ millions were spent by 3 pharmaceutical companies 18 1) Widespread Pain Index (WPI) See diagram (0-19 points) 7+ or 3-6 2) Symptom Score (SS): 0=none, 1=mild, 2=mod, 3=severe a. Chronic fatigue (0-3) Unrefreshing sleep (0-3) Cognitive complaints (0-3) b. Multisystem complaints (0-3) Max SS = 12 5+ and 9+ > 3 months in duration and without other explanation FM FM Alternate “new” FM Diagnostic Criteria (ACR* 2010) Wolf F, et al. The American College of Rheumatology* Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. Arthritis Care & Research. Vol. 62, No. 5, May 2010, pp 600–610
  18. 18. FM is an illness of central sensitivity and sympathetic overdrive Common Manifestations include: »Migraine and tension headaches »TMJ/TMD »Paresthesia (numbness and tingling) »Restless legs syndrome »Irritable bowel syndrome, IBS-D, IBS-C »Irritable bladder or interstitial cystitis »Painful menstruation, pelvic pain, vulvodynia »Heart palpitations, sinus tachycardia, orthostatic intolerance »Sicca syndrome (dry eyes and mouth) »Light, noise and chemical sensitivities 19
  19. 19. Who develops chronic widespread pain and why? 20 • Women > Men. Children. • Susceptible individuals (genetic?) • Sleep deprived or chronically sleep disturbed • Emotionally stressed • Physically depleted or overextended • Physical insults: hormonal changes viral infections inflammation and autoimmunity physical trauma exposures…
  20. 20. FM is more prevalent in people experiencing: Mental health problems: »Anxiety »PTSD »Bipolar disorder »Depression Medical conditions: »Localized pain conditions »Hormone deficiencies »Nutritional deficiencies »Sleep disorders »Inflammatory and autoimmune disorders 21
  21. 21. Examples of FM prevalence among various groups: »General population à »Women ---------------à »Men--------------------à »IM & Rheum clinics à »IBS---------------------à »Hemodialysis---------à »Type 2 diabetes------à »Behcet’s syndrome à 2% 4% 0.01% 15% 13% 6% 15%-23% 80% 22 Prevalence of fibromyalgia in general population and patients, a systematic review and meta-analysis. Heidari F1, Afshari M2, Moosazadeh M3. Rheumatol Int. 2017 Apr 26. doi: 10.1007/s00296-017-3725-2.
  22. 22. Research findings led to drug development to improve FM pain »Functional MRI---activation of multiple areas of the brain related to pain, and more areas than normal controls. »Spinal fluid---elevated levels of Substance P and glutamate (pain neurotransmitters) »Sleep characterized by “alpha wave intrusion” (part of the brain stays active or “awake”) »Many FM patients have evidence of small fiber nerve damage Pain. 2013 Nov;154(11):2310-6. doi: 10.1016/j.pain.2013.06.001. Epub 2013 Jun 5. Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia. Oaklander AL, Herzog ZD, Downs HM, Klein MM.
  23. 23. http://www.optimyz.com/pain-explained/ In FM the ascending pain signal is amplified In FM the descending signal that inhibits pain is reduced
  24. 24. Common causes of SFN damage: diabetes or glucose intolerance, hypothyroidism, autoimmune diseases like Sjögren’s Syndrome or Lupus, nutritional deficiencies, Celiac disease, Lyme disease, HIV, alcoholism and many others… Small fiber nerves (C-fibers) are in the skin and peripheral nerves but also regulate organs and the autonomic nervous system. Pediatrics. 2013 Apr;131(4):e1091-100. doi: 10.1542/peds.2012-2597. Epub 2013 Mar 11. Evidence of small-fiber polyneuropathy in unexplained, juvenile-onset, widespread pain syndromes. Oaklander AL1, Klein MM.
  25. 25. Small nerve fiber injury may result in pain and autonomic nervous system dysregulation »Amplification of pain and other sensations (light, sound, temp) »dry eyes, dry mouth »postural lightheadedness (OI: orthostatic intolerance), fainting »abnormal sweating »erectile dysfunction »nausea, vomiting, diarrhea, constipation, low appetite »difficulty with urinary function, frequency, pain
  26. 26. Small fiber nerve damage may cause only subtle physical exam or diagnostic findings. »Coordination, motor, and reflex examinations are normal. »Light touch, vibratory sensation, and proprioception may be normal. Decreased pinprick, decreased thermal (heat/cold) sensation, vibratory sensation, or hyperalgesia are common. »EMG and nerve conduction may be normal 27 https://thinkingdr.files.wordpress.com/2010/04/ncv-test1.jpg
  27. 27. 28 Remember: local/regional pain syndromes are amplified by FM »Osteoarthritis (OA) »Cervical or lumbar disc disease »TMJ/TMD »Daily headache & migraine syndromes »IBS, interstitial cystitis, endometriosis »Carpel tunnel syndrome, bursitis, tendonitis, plantar fasciitis, bone spurs… »Peripheral neuropathy…
  28. 28. Making a diagnosis of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome ME/CFS
  29. 29. ME/CFS Historical Background § The term “Chronic Fatigue Syndrome” or “CFS” emerged in 1988* to replace “Chronic Epstein Barr Virus”, or “Chronic EBV” and described a post-infection or post- viral syndrome. [*CFS Holmes Criteria] § CFS is known by many other names (ME/CFS): CFIDS- Chronic Fatigue Immune Dysfunction Syndrome ME - Myalgic Encephalomyelitis Post-Viral Fatigue or Post-Infectious Fatigue Syndrome § Not a new illness. World-wide and multicultural. § Myalgic Encephalomyelitis (ME) is the term used outside the U.S. to describe the more severe form of CFS-like illness *Holmes GP, et al. Chronic fatigue syndrome: a working case definition. Ann Intern Med 1988;108:387-9.
  30. 30. » Clinically evaluated, unexplained, persistent or relapsing fatigue of at least 6 months duration, that is of new or definite onset… and results in substantial reduction in previous levels of activity, plus… » The concurrent occurrence of at least 4 of the following 8 symptoms: » post-exertional malaise-- post exertional pain » impairment in short-term memory or concentration » unrefreshing sleep » muscle pain » multi-joint pain » headaches » sore throat » tender cervical or axillary lymph nodes. 1994 “Fukuda” CFS Criteria [or FM?] *Fukuda et al, Annals of Internal Medicine, Vol. 121, December 15, 1994, pp. 953-959
  31. 31. CFS prevalence in the U.S. CDC population-based epidemiology studies 1994 Fukuda criteria/ Wichita* or 2003 Revised Empiric Criteria/Georgia** 4 million CFS 2.5%** Plus 7 million CFS-like by **Georgia study with revised criteria 2003. *Archives of Internal Medicine 2003:163:1530-1536 **Population Health Metrics 2007;5:5. 1 million CFS 0.5%* Plus 2 million CFS-like by *Wichita study using 1994 Fukuda criteria ME/CFS patients were not screened for FM criteria
  32. 32. 33 2003 “Canadian Consensus Criteria” for CFS/ME 1. Substantial reduction in activity level due to new onset, unexplained, persistent fatigue (at least 6 months in duration) 2. Post exertional malaise (payback), delayed recovery (>24 hrs) 3. Sleep dysfunction (wide range). Unrefreshing or altered rhythm. 4. Pain – myalgia/arthralgia, headaches 5. Neurologic/Cognitive manifestations (concentration, short term memory, “sensory overload,” disorientation/confusion, ataxia …) 6. Plus at least one symptom from two of the following: »Autonomic manifestations e.g. orthostatic intolerance, POTS, IBS, vertigo, vasomotor instability, respiratory irregularities… [ANS] »Neuroendocrine manifestations e.g. temperature intolerance, weight or appetite changes, reactive hypoglycemia, low stress tolerance… »Immune manifestations e.g. tender lymph nodes, sore throat, flu-like symptoms, allergy symptoms, hypersensitivities… Carruthers BM et al. (2003). "Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols" (PDF). Journal of Chronic Fatigue Syndrome 11 (1): 7–36.
  33. 33. “Beyond ME/CFS: Redefining an Illness” The Institute of Medicine* Report was published Feb 10, 2015 and outlined new clinical diagnostic criteria for ME/CFS www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx § "Key Facts" (2 pages) § "MECFS Clinicians Guide" (20 pages) § The entire 300+ page report---(300+ pages) The IOM* is now called the National Academy of Medicine.
  34. 34. 836,000 to 2.5 million people in the US meet criteria for ME/CFS An estimated 84-91% not yet diagnosed (CDC 2003). Patients struggle for years before getting a diagnosis » 75% take >1 year to get diagnosed » 30% took >5 years to get diagnosed Doctors are often skeptical about the serious nature of the illness, and have the misconception that it is a psychological illness < 1/3 of medical schools include ME/CFS in the curriculum <40% of medical textbooks include information on ME/CFS IOM report pages 1-13
  35. 35. The purpose of IOM Report: To improve clinical diagnosis and care for people with ME/CFS. •Common core symptoms of ME/CFS are based on research •Focus is on illness manifestations that are objective. •A simplified approach to increase ease of diagnosis
  36. 36. ME/CFS Clinical Diagnostic Criteria: These CORE 4-5 criteria are required for diagnosis, must be moderate-severe, frequent in occurrence (present >50% of time) and not otherwise explained by another condition. 1) Impaired function related to exhaustion/fatigue/fatigability (physical and cognitive) 2) PEM: post exertional malaise (illness relapse or worsening after activity) 3) Unrefreshing sleep 4) A. Cognitive impairment and/or B. Orthostatic intolerance/autonomic dysfunction Other common features of illness include: ---Pain: including significant overlap with FM as currently defined ---Immune or infection manifestations (allergy, inflammation, etc) ---Neuroendocrine dysregulation (brain regulation of hormones)
  37. 37. ME/CFS can be diagnosed definitively after 6 months of supportive care and diagnostic investigations. It is expected that a differential diagnosis, appropriate workup of symptoms and treatment, including referral to specialists, will be directed by health care providers. All other identifiable illnesses should be diagnosed and treated A working or provisional diagnosis of ME/CFS can be made earlier than 6 months. Supportive care and management should be provided from the beginning.
  38. 38. Many infections are associated with a post-infection fatigue syndrome… including Epstein Barr Virus (mono) »Herpesviruses (EBV, CMV, HSV, VZV, HHV-6) »Parvovirus B-19 »Enteroviruses (Coxsackie, Echo, Poliovirus) »Flaviviruses (tick/mosquito---WNV, dengue) »Giardia lamblia »Mycoplasma and Chlamydia »Lyme disease (Borrelia sp) But no smoking gun…
  39. 39. New Research Breakthroughs ongoing… »Metabolomics--- low cellular energy production »Microbiome--- altered gut flora and immune impact »Inflammation--- abnormal cytokine patterns, auto- antibodies, immune cell dysfunction (NK cells) »Genetics--- familial risk, mutations 40
  40. 40. FM ME/CFS Symptoms respond to lifestyle interventions and medications: § PEM mild-moderate and manageable § Pain & tenderness--- responds to many treatments § Sleep—manageable with effort § Mental Health– linked to symptoms § Fatigue—tracks closely with pain Low impact exercise helps all aspects if pain is considered and managed. *HUA: 10-12 hr/24 hours Symptoms more difficult to treat and medications are often poorly tolerated. § PEM severe and prolonged § Fatigue and cognition § Sleep– difficult to treat § OI § Pain– PEM and can be severe The key to management is reduced activity and “pacing”. Exercise can easily worsen all aspects of illness and cause extended relapse. HUA: 2-8 hr/24 hour *HUA= Hours of Upright Activity
  41. 41. *LBMD opinion J IOM criteria CHRONIC FATIGUE & CHRONIC PAIN
  42. 42. PAIN reduction Restorative SLEEP MENTAL HEALTH FITNESS ORTHOSTATIC INTOLERANCE… CHRONIC UNWELLNESS PACING and activity management

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