Without hard lab test data to measure how sick you are, you can still provide objective evidence of how it affects your life.
FM & ME/CFS specialist Richard Podell, MD* - a clinical professor at New Jersey's Robert Wood Johnson Medical School - has served as a Fibromyalgia disability medical expert witness on behalf of both insurance companies and patients, and lectures legal professionals on the process of disability litigation. Though this advice applies specifically to claims in New Jersey, much of it will be useful in general.
For someone with Fibromyalgia, it's a difficult step to apply for disability. That's true here in New Jersey and throughout the country. How upsetting it then feels if an insurance company representative appears not to believe that you are actually very ill. But don't be put off. You can improve your Fibromyalgia disability claim, if you imagine yourself in the insurance examiner's place.
[And to help you and your doctor consider your case in the context of current research, see Dr. Podell's article] “Fibromyalgia Disability: Medical Evidence that Supports the New Neural Sensitization Paradigm.”
Medical Expert Witness Issue #1
Your insurance company isn't allowed to assume that you are telling the truth just because you say so.
Insurance companies have learned by hard experience with other forms of illness that a few individuals exaggerate their symptoms. Therefore, a disability insurance company has not only the right, but an obligation to satisfy themselves that the claims they pay are, in fact, valid.
Expert Medical Witness Issue #2
Fibromyalgia pain is, by definition, subjective. No one can just look and tell for sure how you feel. In contrast, most illnesses that disability companies are used to display “objective” abnormalities that anyone can see.
People with bad backs have trouble bending; people with bad knees may limp. People with heart or lung disease can't walk very far. EKG or chest X-ray may show damage. However, Fibromyalgia disability is different. You may look fairly normal. So, how can the insurance agent know for sure that you’re truthful?
Medical Expert Witness Issue #3
With Fibromyalgia, when you physically push through your limits the expected flare-up of symptoms might not occur right away.
Often the flare-up is delayed for hours or even a day. This pattern of Fibromyalgia disability is very different from that of most other illnesses. Insurance industry representatives - and indeed many physicians - don't yet understand this very basic fact.
Consider the Functional Capacity Evaluation (FCE), the insurance industry's standard “test.” A physical or occupational therapist observes a claimant's ability to bend, crawl, push, and pull things during a single session of two hours or so.
That's fine if the key problems are muscle weakness or stiff joints, where the symptom flare-up occurs quickly.
But it misses the point for Fibromyalgia, since the expected flare-up often does not occur. Current FCE protocols make no provision for follow-up; so these delayed reactions are missed.
Expert Medical Witness Issue #4
Physically pushing through your limits for just one day might cause only a minor flare-up. But repeating the same effort - for two, three, four or five days in a row –will usually cause a flare-up that's much more severe.
Current FCE protocols test for just one or two days. But real world work occurs five days every week. FCE testing therefore is not a realistic test of the Fibromyalgia patient's ability to actually keep at work.
Practical “Tests” To Substantiate Your Fibromyalgia Disability
We don't yet have an “objective” lab test to measure how sick you are. However, you can “objectively” document how your fibromyalgia disability has affected how you live.
Test #1: Keep a diary of how you feel each day, how you spend your time, when you were too tired to undertake a normal task, and how your symptoms were affected when you tried to do too much.
It's easy to dismiss as self-serving an essay you write the day you apply for disability, but a six to twelve month long diary should be taken seriously. That's how you can serve as your own “expert medical witness”.
Test #2: Obtain written statements from friends, clergy, employers, neighbors, even family - who know how your illness has affected or limited your life. This “objective” testimony is impossible to ignore.
Test #3: Be sure your physician actually writes down in his or her office notes the specific ways that your illness limits your life style and activities. Your doctor's office notes may be your most important medical expert witness.
Test #4: Ask your physician to document ALL your fibromyalgia related complaints, not just your muscle pain. For example: poor stamina and fatigue, prolonged exacerbation of pain and/or fatigue after modest activity, muscle pain, poor sleep and cognitive difficulties may be as important as fatigue for affecting your ability to work.
Note: Many people with Fibromyalgia disability also satisfy the diagnostic criteria for Chronic Fatigue Syndrome. In other settings such as social security, the standards for proving disability due to chronic fatigue syndrome are clearer than they are for fibromyalgia. However, in other settings it's the opposite. As a practical matter, if you qualify for both diagnoses, it may be best to present them both.
Test #5: Consult at least one physician who has special expertise, sympathy and experience with fibromyalgia.
Note: My patients from New Jersey, New York, Pennsylvania, and some states across the country appreciate that now many rheumatologists, physical medicine specialists, internists and family physicians do understand that fibromyalgia is a real, difficult and physical illness. However, they also report that other physicians remain skeptical.
Check with your local fibromyalgia support groups for a read on which local doctors are both knowledgeable and sympathetic.
Test #6: You, your physician and your attorney should discuss the pro's and con's of accepting your disability insurance company's invitation to undergo functional capacity evaluation (FCE) testing.
As currently performed – on a single day, without attention to the typical delayed symptom flare-up, the FCE is a misleading test of your ability to function in the workplace on an on-going basis. And, if you are very ill, the physical effort involved in the FCE testing, might make you worse for many weeks or for months.
Test #7: Consider obtaining a formal evaluation by a psychologist or a psychiatrist. If depression or anxiety have developed, it's best that you recognize and treat it.
Once that's been done, your psychologist or psychiatrist can attest that the physical aspects of your illness are the main reasons why you are not able to work. Without this support a skeptic might dismiss your claimed impairment as mainly “psychological.”
Test #8: If a major part of your disability claim relates to mental concentration difficulties, consider formal neuropsychological testing.
This entails several hours of standardized pencil and paper testing, and is expensive. But it's the most objective way to document cognitive impairment. However, the cognitive defects we can measure can be fairly subtle. So be sure the neuropsychologist you see has experience as an expert medical witness testing people with severe fibromyalgia and/or ME/CFS.
* This information is reproduced with kind permission from the website of Richard Podell, MD (http://www.drpodell.org) C 2002 Podell and King Medical Practice. Dr. Podell is a clinical professor at New Jersey's Robert Wood Johnson Medical School. He has special interests in Chronic Fatigue Syndrome/Fibromyalgia, stress related disorders, and clinical nutrition. Dr. Podell has offices in Springfield and Somerset New Jersey. For more information please go to http://www.DrPodell.org.
Note: This information has not been evaluated by the FDA. It is generic and is not intended to take the place of professional legal or medical advice, or to diagnose, treat, cure, or prevent any illness, condition or disease. It is very important that you make no change in your healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.