Lisa Lorden Myers is a well known California-based writer who has CFS and fibromyalgia. This article is reproduced with kind permission* from Lisa’s website, Living with CFS & Fibromyalgia (LivingWithCFS.com). You can also visit Lisa on Facebook at http://www.facebook.com/livingwithCFSandFibro.
CFS & Fibromyalgia: The Meaning of Recovery
Re-cov-er-y (ri-kuhv-uh-ree): noun
– regaining something lost or taken away
The medical model of illness tends to define “recovery” in very black-and-white terms. It implies a cure, or an elimination of symptoms, in which patients return to their pre-disease (or “pre-morbid,” as it is referred to in the medical literature) state.
When it comes to a chronic illness like Fibromyalgia (FM) or Chronic Fatigue Syndrome (CFS), the issue of recovery is much more complex.
Patients who are diagnosed with an illness for which there is no cure may be susceptible to feelings of hopelessness or despair. How can someone recover from an incurable illness? Yet there are many ways to conceptualize recovery that don’t depend on a cure.
While the search for a cure focuses on the illness, recovery focuses on the patient.
The varying perceptions and interpretations of “recovery” and the paucity of research data makes the concept a confusing one for those seeking answers to questions about their prognosis. Even the variety of terms used to denote recovery and/or symptom exacerbation, such as remission, relapse, flare, etc. – none of which are consistently defined in the literature – reflects this ambiguity.
In the fibromyalgia literature, the concept of recovery is explored more in terms of function than pathology. Treatment interventions that reduce pain and enhance functioning can help patients recover important capabilities, even without being “cured.”
There is very little research data on the clinical course of CFS/FM, aside from the often conflicting studies that measure efficacies of various treatments. The few studies that do exist indicate that patients seem to remain stable or improve over time.
For example, a longitudinal study undertaken to explore fibromyalgia outcomes with standard medical care revealed that after 3 years:
• 47% of subjects reported overall moderate to marked improvement,
• While the other 53% reported either slight improvement, no change, or deterioration (Fitzcharles, Costa, & Poyhia, 2003).
Researchers have noted the possibility that improvement seen over time could potentially be attributed to patients’ improved coping skills, rather than an amelioration of the symptoms themselves.
For example, a six-year prospective study of a group of FM patients revealed that participants’ initial symptoms persisted six years later (Baumgartner, Finckh, Cedraschi, & Vischer, 2002). Specifically:
• Pain had actually increased,
• But patients’ evaluation of their overall health and other measures of quality of life had improved.
The researchers concluded that while the FM symptoms persisted without improvement, the patients appeared better able to cope with them.
Another longitudinal study (Wolfe et al., 1997), in which participants responded to comprehensive questionnaires every 6 months for a period of nearly 8 years, revealed a similar pattern:
• Measures of pain, fatigue, sleep disturbance, and other indicators were markedly abnormal at the beginning of the study and remained largely unchanged over the study period.
• Yet it was interesting to note that while functional disability had worsened slightly over the study period, health satisfaction improved slightly.
Again, this may reflect an improvement in coping skills.
Absence of Illness vs. Adaptation to Illness?
Dr. David Bell, a well-known CFS/FM clinician and researcher, speculated on this paradox between symptoms and perceived wellness in his lecture at a recent conference hosted by The Organization for Fatigue and Fibromyalgia Education and Research (O.F.F.E.R) in Salt Lake City.
As a pediatrician he evaluated and treated a large number of children with CFS following a 1985 “outbreak” of CFS in Lyndonville, NY (where his practice is located). It is not known what triggered this cluster of CFS cases; however, there have been similar outbreaks documented over the years in other parts of the country and abroad.
Of the 230 people who became ill in Lyndonville, 60 of them were children.
Bell conducted a 13-year follow-up study of the 46 children and adolescents he had seen between 1984 and 1987, which was published in the Journal of Pediatrics (2001). Of the 35 who responded:
• 37% considered themselves resolved of illness at follow-up,
• 43% considered themselves well but not resolved,
• 11% considered themselves chronically ill,
• And 9% considered themselves more ill than during the early years of illness.
Interestingly, despite these seemingly positive outcomes, more specific questions about symptoms and activity limitations revealed otherwise.
The study utilized an instrument that has been well-documented in the medical literature, The Medical Outcomes Study Short Form Health Survey (SF-36). The results on this measure indicated that the majority of participants were still struggling with significant symptoms.
In fact, four subjects stated that they had experienced a “complete resolution of symptoms,” but even these individuals noted moderate to severe symptoms on the SF-36. [See Dr. Bell’s presentation on his most recent follow-up for more on this discrepancy, which he dubbed ‘health-identity confusion.’]
How should this inconsistency be interpreted?
“Is this adaptation by denial,” proposed Dr. Bell, “and is this a healthy denial?” Dr. Bell pointed out that recovery in CFS might be more appropriately defined as the adaptation to a disease state, rather than the absence of a disease state.
He suggested that the same might be true of fibromyalgia, since the illnesses seem to overlap in so many ways. Said Dr. Bell:
“One of the central aspects of the definition of CFS and possibly FM is that reduced energy levels seem to…be precipitated by [over-] exertion. It’s possible that perceived recovery occurs when patients learn not to exceed that level that causes relapse.”
In fact, the self-help literature on CFS/FM abounds with strategies for managing symptoms, working within reduced energy levels, and coping with stress. Patients seem to report almost universally that learning to listen to their bodies and recognize their limits helps them to manage and cope with symptoms.
– Lisa Lorden Myers
For more on the issue of ME/CFS/FM recovery, see:
• “The Prisoner” – Dr. Bell’s case study of a patient who eventually did mostly recover from ME/CFS.
• “My Recovery Was Like This, Too” – one of the reader comments on that case study, by a patient who after 10 years of progress also feels “mostly normal.” Followed by more encouraging reader comments.
Note: This article, first published Mar 28, 2012, is reproduced with kind permission from Lisa Lorden Myers’ website LivingWithCFS.com. ©2012 Lisa Lorden Myers. All Rights Reserved.