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September 8, 2013

Surviving with Fibromyalgia

Reuel S. Amdur

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Over the years I have had the occasional client suffering from fibromyalgia. I have one right now. I am a social worker in private practice who assists people in appealing disability applications rejected under such programs as the Ontario Disability Support Program (ODSP), CPP, and Régie des rentes du Québec. That is how I come to encounter them.

Fibromyalgia is a difficult condition to identify because symptoms are similar to symptoms in so many other conditions.  It is ordinarily diagnosed after eliminating the other possibilities.  The Mayo Clinic defines it as “a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues.”  While the Mayo Clinic talks about memory problems, it should be recognized that other cognitive difficulties are often implicated, in a condition commonly referred to as fibro-fog. 

The old way of diagnosing the condition was to determine that the person had widespread pain for at least three months, along with 11 or more out of 18 sensitive points on the body.  When these points are subjected to even mild pressure, pain ensues.  The medical profession no longer holds to this criterion.  One reason is that a sensitive point today may not be sensitive tomorrow, and vice versa.

Cause is unknown, though there are some things that seem to be potentially implicated, for example, genetic factors, stress, physical injury (especially to the neck), disturbed sleep, hormonal and endocrinal factors, and over-sensitivity to pain of nerve cells in the brain or spinal cord.  Being the victim of abuse may also be a factor.

Fibromyalgia is a chronic condition which is often difficult to treat.  Various medicines are prescribed for pain, with various degrees of effectiveness.  Many sufferers use and claim some relief with marihuana, but its use is controversial among doctors.  Dr. Robert DuPont, a psychiatrist at Georgetown University Medical School, argues that marihuana smoke has perhaps 2,000 chemicals and that the user does therefore not know what she is using.  As well, the composition of the product varies widely.  Currently, there is a cannabinoid medical compound, nabildone, which extracts one element from marihuana and which is available in Canada, but its cost—around $4,000 a year—makes it less accessible for many people than the actual marihuana, even when the purchase is illegal.  In any case, what works for one patient may not help another.  Trial and error, by physician and patient, seems to be the rule in choice of drug. 

Some find benefit from yoga and other movement therapies, various manipulative therapies, and acupuncture.  Then there are herbal and dietary supplements.  Some people claim that these help, and whether the impact is based on the substances used or on the placebo effect becomes secondary.  Getting exercise and good sleep are helpful. 

And now to my clients.  Of the three appealing denial of ODSP I can think of, all were women, and in fact female sufferers are eight or nine times more frequent than males.  All of these clients were also depressed.  One was rejected because the rheumatologist did not feel like completing the forms.  (When I met him at a lecture he was giving, I suggested that if form completion was too much trouble he might hand the forms and the patient’s chart to a nurse to complete for his signature.)  That client lost on appeal but was successful on reconsideration of the decision.

The second client was granted without having to go to an appeal hearing when additional evidence was submitted, including a statement from the family physician who treated her as to the number of sensitive points he had found.

Because of the kind of involvement I have with clients, I do not necessarily know everything about their illness.  However, it just happens that the current client I am helping exhibits some of the characteristics of fibro-fog.  She complains about how her concentration and memory are troubled.  There is a memory test that consists of mentioning three objects in the room and, after five minutes of talking about something else, asking what the objects were.  She remembered one out of three. She takes nabildone, with her welfare drug card, but it is not particularly effective.

In turning her down, the adjudicator said, “No current specialist opinion is available for review of substantiality at this time.”  This kind of response is indicative of the kind of difficulty people face in applying for ODSP.  In the first place, the adjudicator had past specialists’ reports, and fibromyalgia is a chronic condition.  According to the regulation under the Act, any physician is a qualified person to complete the necessary forms, and her family physician did so, giving up-to-date verification of the specialists’ findings.  Surely this is gilding the lily and wasting the precious time of specialists struggling with long waiting lists.

Decisions by adjudicators for ODSP may be particularly problematic, but the real winner for the booby prize on adjudications was on another condition.  A psychologist diagnosed pseudo-dementia as one woman’s condition.  The definition of pseudo-dementia is that a person has symptoms of those like dementia but without physical signs.  The adjudicator rejected the application because there was no physical evidence.  So in order to establish that she had pseudo-dementia the adjudicator wanted evidence that she did not have it!

All this wanders a bit from fibromyalgia, but it is important to know the kinds of problems people have in getting the benefits to which they are entitled.  Fibromyalgia may get better over time but it usually lasts for a long time, often for life.  Some sufferers can work, perhaps in changing jobs or cutting down on hours.  Others can’t.

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