May 12th is Fibromyalgia Awareness Day – a day we try to educate and build awareness about a disease that affects over six million Americans and many more around the world.
The pain, fatigue, depression and other symptoms that come with fibromylagia are notoriously difficult to diagnosis and treat. Soon they may become even harder. There are some important developments underway that could affect how fibromyalgia is classified as a disease and whether health insurers pay for its treatment.
Let me explain.
The preliminary and modified diagnostic criteria for fibromyalgia has come under fire — and rightly so — because it only looks at somatic complaints, which are symptoms that have no medical explanation.
The American Psychiatric Association’s fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which is due be released this month, could change the diagnostic criteria for fibromyalgia – but not for the better.
The new DSM-5 describes somatic symptom disorder this way:
“Somatic symptom disorder (SSD) is characterized by somatic symptoms that are either very distressing or result in significant disruption of functioning, as well as excessive and disproportionate thoughts, feelings and behaviors regarding those symptoms.”
The current diagnosis of somatization disorder in the DSM-IV requires a specific number of complaints from among four symptom groups. But the new SSD criteria no longer have such a requirement; symptoms must be significantly distressing or disruptive to daily life and must be accompanied by excessive thoughts, feelings, or behaviors.
An important change to the older version, termed somatization disorder, is that while medically unexplained symptoms were a key feature for many mental health disorders, the new SSD diagnosis does not require that the somatic symptoms be medically unexplained.
In his study, Fibromyalgia Prevalence, Somatic Symptom Reporting, and the Dimensionality of Polysymptomatic Distress, Dr. Frederick Wolfe, the lead author of the proposed diagnostics for fibromyalgia, points out that 40% of fibromyalgia patients will fall into the new DSM-5 somatic symptom disorder classification.
It bears mentioning that this study used a modified tool that has not been approved for evaluating psychiatric somatic disorders, which brings into question its validity.
It also makes the margin between psychiatric disorder and fibromyalgia blurry.
Wolfe’s criteria for somatic symptom disorder will put many patients at risk for being diagnosed with a mental disorder without investigating their medical conditions. Fibromyalgia patients are particularly at risk, because the new criteria for diagnosis only considers somatic complaints and uses a questionnaire platform, such as those used in diagnosing psychiatric illness. The value of a physical exam is omitted.
Living with pain every day, regardless of the reason, interferes with a person physically, mentally, emotionally, financially and socially. The absence of specific medical testing, or ignoring conditions that do have objective measurements (such as hypothyroidism, autoimmune dysfunction, migraine, myofascial pain syndrome, rheumatoid arthritis, etc.) will make it difficult to smooth out the rough edges involved in both mental health disorders and fibromyalgia.
Ignoring research such as that done by Behm, et al. (2012), Homann, et al. (2013) and effects on the autonomic nervous system, such as that done by Lerma, et al. (2011) will leave the patient floundering in pain and dysfunction, adding to stress, and could aid in mental collapse that might otherwise be avoided.
So what’s the problem?
The International Classification of Diseases Codes (ICD) are used to support areas such as morbidity coding and statistics, public health reporting and tracking trends. They are used by hospitals, nursing homes, assisted living and rehab facilities, private and public medical clinics, psychiatric facilities, medical insurance companies, physician practices and other medical providers. The ICD code is a quick way to identify diagnosis and can affect everything from the classification of your disease to what tests and treatments your doctor can order, and how insurance billing is done.
The current U.S. clinical modification of ICD-9CM is to be replaced by ICD-10CM by October 1, 2014. In the US ICD-9CM, there is no specific code for fibromyalgia; rather it falls under myalgia and myositis, unspecific, 729.1.
With muscle pain being the primary complaint in fibromyalgia, it could remain where it is. However, a great deal of research suggests that fibromyalgia also has neuro-endocrine-immune components, in which case it could be given neurologic or immune coding.
This could all be jeopardized if Dr. Wolfe’s new criteria are embraced within the medical community.
If fibromyalgia is coded as a somatic symptom disorder, as suggested by Wolfe, your primary insurance will no longer cover visits to your medical doctor. Instead, you will have to be seen by a psychiatrist or psychologist under the mental health rider of your insurance policy.
Generally, I am sad to say, the mental health benefits provided by many insurers are insufficient to serve the current patient base and would be even more inadequate if millions of fibromyalgia patients are added.
It is very scary indeed to think that we could be denied the care we need.
What can we do?
Understanding what goes into disease classification is important. The proposed diagnostic criteria for fibromyalgia are non-specific in relating symptoms and complaints to known overlapping conditions. Most of these conditions have objective tests such as palpating for myofascial trigger points, brain mapping for migraine, blood tests for hypothyroidism or Hashimoto’s thyroiditis, table tilt test for dysautonomia and holter monitors for measurement of heart rate variability, sleep studies to evaluate a disruption in normal sleep cycles and periodic limb movement, cystoscopy and other tests for evaluation of bladder problems, etc.
Fibromyalgia has not been classified in the new criteria yet. Studies for biomarkers for fibromyalgia are promising, but if the codes are changed, not only will our insurance reimbursement be in jeopardy, so will research.
The burden of reporting symptoms rests solely on each individual patient, but the burden of knowing what tests to order resides with healthcare providers. Pay attention to your symptoms, and learn about fibromyalgia and the comorbid disorders. Be proactive in your healthcare.
In the long run, it is the patient and the physicians that help those making these decisions make the right ones. Don’t let your care get lost between the cracks.
Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD), and Insider Secrets for Treating Fibromyalgia.
Celeste is a fibromyalgia expert for Dr. Oz, et, al. at Sharecare and advocates for all chronic pain patients as a participant in the Pain Alliance to Implement a National Strategy (Pains Project). Her website is www.TheseThree.com.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.
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