Prepare your claim and application with an eye to what will happen if your claim is terminated or denied. In addition to your attending physician statement, your own statement, and your employer’s statement, you should seriously consider submitting more supporting documentation. This can include statements from family members, friends, and coworkers; statements from your primary physicians and other treating health-care providers; applicable medical literature; and further expert evaluations.
You need to assume that if your claim is wrongly denied or terminated and you have to go to court, you will not be permitted to call any witnesses or submit any additional information for the court to consider. It must all be submitted for consideration by the disability insurer before it makes its final decision. Evaluation of the decision to deny or terminate your benefits will be based solely on what is in the claim file at the time of final denial of your claim.
Statements from family, friends, and coworkers can be helpful if they address the right issues. The statements need to share observations and anecdotes that demonstrate the problems you have that interfere with your ability to work. “We went to the movies, but you were unable to sit through the movie.” “We went out for a day of shopping, but had to call it quits after an hour.” When they see you they notice a slow gait and that you move as if you are in pain or fatigued (because you are). The light has gone out of your eyes. They notice that you take much longer to accomplish tasks you used to do without any problem. They notice problems with memory (missing appointments, forgetting instructions or directions) or concentration (easily distracted or missing instructions). In addition, they should state who they are, how they know you, and how often they see you.
Treating health-care providers, in addition to your primary physician or rheumatologist, can help your claim. Your primary treating physician is perhaps the most important, as that doctor will need to fill out regular attending-physician statements and certify your disability. If the claim becomes more contentious, that physician will need to provide more detailed information on your behalf reviewing the knowledge he or she has of you, your symptoms, and why you are unable to work. Physical therapists, massage therapists, chiropractors—anyone who sees you more than just a couple times per year, especially people who can talk about feeling muscle spasms when they examine you, or who can report the consistency of symptoms despite their best efforts, can help.
Not only do you need to get statements, you need to check your medical records because they will be requested by your disability insurer. These companies can omit or misstate important history or they can tend to be overly optimistic: “patient feeling better”; “showing improvement”; “hasn’t felt this good in years.” Hired medical evaluators for the insurers will tend to cherry-pick your records for entries that support their predictable opinions that you can work. It is important to look at the symptoms recorded regularly. This means it is important that you tell your treating health-care providers about your symptoms when they ask you. Carry a list to remind yourself.
All written statements need to be able to stand on their own, as health-care providers will not get a chance to explain themselves. A common problem arises when your doctor says you have FMS or CFS and you cannot work but does not add any additional information. The disability insurer will not ask them for more. However, your doctor needs to describe the symptoms arising from your diagnoses and why those symptoms interfere with your ability to work. They need to set out their experience with you and other CFS and FMS patients.
So what interferes with your ability to perform the material duties of your own or any occupation? An important material duty is the ability to show up for work consistently and continuously. For people with FMS or CFS, one of the most common problems is showing up for work eight hours per day, five days per week, week after week. Even when you are able to get to work, you may have impaired productivity. Specific limiting problems include pain, fatigue, and cognitive problems. Doctors who are reluctant to label you “disabled” may be much more willing to say you cannot be expected to show up consistently for forty hours of work every week because of your symptoms.
Other expert evaluations can also help win CFS and FMS disability claims. While expensive, they also can provide powerful evidence to support your claim. These include physical capacity evaluations (PCEs or FCEs); neuropsychological evaluations; vocational evaluations; and psychological and psychiatric evaluations. However, beware of an important caveat: not all physical capacity evaluators, neuropsychologists, vocational counselors, psychologists, or psychiatrists will understand the types of problems people with CFS and FMS typically experience that interfere with their ability to work. If you believe such evaluations are necessary, then get a referral from your doctor or a knowledgeable attorney. An evaluator who has no experience with patients with CFS and FMS will likely be of little value. The benefit of an attorney referral is the ability to bury the evaluation if it is not supportive. It is difficult to predict whether or not a PCE or neuropsychological evaluation will be supportive until you do it. Most times they are supportive, but sometimes they are not.
In addition to these experts, if the economics of your claim justify the expense, it is useful to get an expert evaluation from one of the top CFS or FMS doctors you can find. Ideally these are health-care providers who dedicate their practices to helping people with CFS and FMS. One of these doctors can provide a good background about the medical condition that many treating doctors cannot. They can offer opinions based on seeing hundreds if not thousands of patients with FMS and CFS. They can help explain the relevant medical knowledge, including helpful published studies, regarding the disabling effects of CFS and FMS, as well as relate the studies done that show that these are legitimate medical conditions recognized by the Social Security Administration, the Veterans Administration, the Centers for Disease Control, and the National Institutes of Health.
Reading this chapter, you could be feeling a little overwhelmed with all that you may need to manage simply to get disability benefits owed you. The unremitting effects of FMS and CFS never make applying for disability benefits easy. The strong skills that previously served you well now fail you. But that is the very reason you have to seek and keep the benefits in the first place. A good doctor and a skillful lawyer can help make the process more bearable and contribute greatly to a successful claim. Until insurer attitudes toward CFS and FMS change, you must be prepared to fight for your benefits and seek and accept help from others.
APPENDIX G
For Physicians
Effective Treatment of Chronic Fatigue Syndrome, Fatigue, Fibromyalgia, and Muscle/Myofascial Pain—Using a Comprehensive Medicine Approach
Jacob Teitelbaum, M. D., medical director of the Fibromyalgia & Fatigue Centers and senior author of the landmark study “Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia—a Placebo-Controlled Study” and the recently published study “Effective Treatment of CFS and Fibromyalgia with D-Ribose.” See www.vitality101.com for the full text. He is also the author of Three Steps to Happiness! Healing Through Joy and Pain Free 1-2-3: A Proven Program to Get YOU Pain Free Now.
Thank you for your interest in these syndromes. This section will give you an overview of how to apply our treatment protocol, which resulted in an average 91 percent improvement of symptoms and helped 91 percent of patients with CFS and fibromyalgia (p<.0001 versus placebo). I can also be reached through the Q&A section of my Web site at www.vitality101.com.
Chronic fatigue syndrome (CFS) and fibromyalgia (FMS) are two common names for overlapping and disabling syndromes. It is estimated that FMS alone affects more than 6 million Americans, causing more disability than rheumatoid arthritis.1 Myofascial pain syndrome (MPS) affects many millions more. Although we still have much to learn, effective treatment is now available for the large majority of patients with these illnesses.2, 3
CFS/FMS/MPS represents a spectrum of processes with a common end point. Because the syndromes af
fect major control systems in the body, there are myriad symptoms that initially do not seem to be related. Recent research has implicated mitochondrial and hypothalamic dysfunction as common denominators in these syndromes.4–7 Dysfunction of hormonal, sleep, and autonomic control (all centered in the hypothalamus) and energy production centers can explain the large number of symptoms and why most patients have a similar set of complaints.
To make it easier to explain to patients, we use the model of a circuit breaker in a house. If the energy demands on their body are more than it can meet, their body “blows a fuse.” The ensuing fatigue forces the person to use less energy, protecting them from harm. On the other hand, although a circuit breaker may protect the circuitry in the home, it does little good if you do not know how to turn it back on or even that it exists.
This analogy actually reflects what occurs. Research in genetic mitochondrial diseases shows not simply myopathic changes, but also marked hypothalamic disruption. Since the hypothalamus controls sleep, the hormonal and autonomic systems, and temperature regulation, it has higher energy needs for its size than other areas. Because of this, as energy stores are depleted, hypothalamic dysfunction occurs early on, resulting in the disordered sleep, autonomic dysfunction, low body temperatures, and hormonal dysfunctions commonly seen in these syndromes. In addition, inadequate energy stores in muscles result in muscle shortening (think of rigor mortis or writer’s cramp) and pain that is further accentuated by the loss of deep sleep. Reductions in stages 3 and 4 of deep sleep result in secondary drops in growth hormone and tissue repair. As discussed below, disrupted sleep causes pain. Therefore, restoring adequate energy production through nutritional, hormonal, and sleep support, and eliminating the stresses that overutilize energy (e. g., infections, situational stresses) restore function in the hypothalamic “circuit breaker” and also allows muscles to release, thus allowing pain to resolve. Our placebo-controlled study showed that when this is done, 91 percent of patients improve, with an average 90 percent improvement in quality of life, and the majority of patients no longer qualified as having FMS by the end of three months (p<.0001 versus placebo).3
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CFS, fibromyalgia, and to some degree myofascial pain syndrome reflect an energy crisis in the body. It is similar to blowing a fuse in your home. There can be many causes. This “fuse blowing” protects the body from further harm, but it dramatically reduces function. Causes include infections, disrupted sleep, pregnancy, hormonal deficiencies, toxins, and other physical and/or situational stresses. The “blown fuse” is the dysfunctional hypothalamus—resulting in poor sleep, and hormonal, autonomic, and temperature dysregulation.
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Diagnosis
The criteria for diagnosing CFS are readily available elsewhere. What is important is that these criteria were meant to be used for research and therefore have stringent exclusion criteria to create a “pure” research cohort. These exclusionary criteria eliminate approximately 80 to 90 percent of patients who clinically have CFS, and therefore I do not recommend them for clinical use. For example, anyone who was significantly depressed in the past, even thirty years earlier, can technically never develop CFS. The American College of Rheumatology (ACR) criteria for fibromyalgia are more useful clinically. According to the ACR, a person can be classified as having fibromyalgia if he or she has:
A history of widespread pain. The patient must have experienced pain or achiness, steady or intermittent, for at least three months. At times, the pain must have been present: on both the right and left sides of the body.
both above and below the waist.
midbody—for example, in the neck, midchest, or midback, including a headache.
Pain on pressing at least eleven of the eighteen spots on the body that are known as tender points.
The presence of another clinical disorder, such as arthritis, does not rule out a diagnosis of fibromyalgia.8
Although the tender point exam takes a good bit of time to master, it clinically adds little and will likely be eliminated in the future. Relative to the time they take to learn, the 11/18 tender points offer little predictive value to whether the person will respond to the treatment approach described in this appendix. In fact, patients with 6/18 points were often also found to have FMS, but the 11/18 level was chosen to increase specificity (at the expense of sensitivity). There is a simpler approach that is effective clinically. If the patient has the paradox of severe fatigue combined with insomnia (if one is exhausted, one should sleep all night), does not have severe primary depression, and these symptoms do not go away with rest, the patient likely has a CFS-related process. If he or she also has widespread pain, fibromyalgia is probably present as well. Both respond well to proper treatment as discussed below. In addition, clinicians may wish to ask the patient if he or she has the following symptoms:
Severe fatigue lasting more than four months.
Feeling worse the day after exercise. Patients may even describe this as feeling as if they’d been “hit by a truck.”
Diffuse, often migratory, achiness.
Disordered sleep. Is the patient able to get seven to eight hours of uninterrupted sleep a night?
Difficulty with word finding and substitution, poor short-term memory, and poor concentration, often described as “brain fog.”
Bowel dysfunction. Many people diagnosed with irritable bowel syndrome (IBS) or spastic colon have CFS/FMS, and their IBS resolves along with the FMS.
Recurrent infections such as sore throats, nasal congestion, orsinusitis.
Chemical/medication sensitivities.
In addition to helping diagnose CFS/FMS, questions about the above symptoms show the patient that their health-care provider understands their illness.
Fibromyalgia may be secondary to other causes. Secondary causes may be suggested by laboratory findings such as an elevated erythrocyte sedimentation rate (ESR), alkaline phosphatase, creatine kinase (CPK), or thyroid-stimulating hormone (TSH). Depression is less likely to be a secondary cause of fibromyalgia and CFS symptoms in patients who express frustration over not having the energy to do the things they want to do as opposed to having a lack of interests. These patients likely are simply frustrated secondary to their illness and not depressed. MPS shares many of the metabolic features seen in FMS, and often resolves with the treatments discussed in this appendix, but evaluation for structural problems should also be done for this more localized process.
Current research and clinical experience show that these patients have a mix of disordered sleep, hormonal insufficiencies, low body temperature, and autonomic dysfunction with low blood pressure and neurally mediated hypotension (NMH). This mix makes sense when you recognize that the hypothalamus is the major control center for all four of these functions.
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Simple Diagnostic Approach
If the patient has the paradox of severe fatigue combined with insomnia (if one is exhausted, one should sleep all night), does not have severe primary depression, and these symptoms do not go away with vacation, he or she likely has a CFS-related process. If he or she also has widespread pain, fibromyalgia is probably present as well. Both respond well to proper treatment as discussed below.
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Anything that results in inadequate energy production or energy needs greater than the body’s production ability can trigger hypothalamic dysfunction. This includes infections, disrupted sleep, pregnancy, hormonal deficiencies, and other physical and/or situational stresses. Although still controversial, a large body of research also strongly suggests mitochondrial dysfunction as a unifying theory in CFS/FMS.7 Some viral infections have been shown to suppress both mitochondrial and hypothalamic function. As noted on page 330, in several genetic mitochondrial diseases, severe hypothalamic damage is seen. This is likely because the hypothalamus has high energy needs. The mitochondrial dysfunction, combined with secondary hypothalamic suppression, can cause the poor function seen in many tissues with high energy need
s. This includes dysfunction of the immune system aggravated by glutathione deficiency, dysfunction of the liver with medication/ chemical sensitivities secondary to a decreased ability to detoxify, irritability of the gastrointestinal tract (from opportunistic infections and autonomic dysfunction), muscle pain, and dysfunction of the central nervous system (CNS) neurotransmitter production and blood flow with secondary brain fog.
Integrative Therapy
Fortunately, two studies (including our recent RCT) 2, 3 showed an average 90 percent improvement rate when using the SHIN protocol. SHIN stands for treating Sleep, Hormonal dysfunction, and Infections, and optimizing Nutritional support. When patients have fatigue and insomnia coupled with widespread pain, see them as having a bodywide “energy crisis.” Treating with the SHIN approach can help them. An editorial in the Journal of the American Academy of Pain Management notes that “this study by Dr. Teitelbaum et al confirms what years of clinical success have shown—that the treatment approach described in Chapter 4 of The Trigger Point Manual is effective, that subclinical abnormalities are important, and that the comprehensive and aggressive metabolic approach to treatment in Teitelbaum’s study is highly successful and makes fibromyalgia a very treatable disorder. The study by Dr. Teitelbaum et al and years of clinical experience make this approach an excellent and powerfully effective part of the standard of practice for treatment of people who suffer from FMS and MPS—both of which are common and devastating syndromes.”9
From Fatigued to Fantastic! Page 38