ME/CFS & Fibromyalgia: What is the Meaning of 'Recovery'?
By Lisa Lorden Myers •
October 24, 2012
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.
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| (2 existing comments)
Recovery is relative
|Posted by: ex-cfs
Oct 25, 2012
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What does it mean to say that you recover from a chronic illness such as CFS/ME? I think it means that you can resume your life, you do not experience troubling or disabling symptoms. The propensity for relapse may be there lurking in the background and you have to take care not to trigger it, but on a daily basis, you're OK most days. You can lead a normal life, even a full life.
Generally in medicine, people say we recover when we get back to normal. But what if "normal" before illness was abnormal? Many people, myself included, had very busy, active, even stressful lives pre-illness. For me, I probably performed at 125% or more of normal for a decade or two. Burnout and nagging fatigue suddenly became full-blown CFS/ME, seemingly overnight. So, getting to normal for me and other formerly busy, active people might be getting back to mostly, but less than, normal, that is to say to 100%, not more than 100% of normal. And if one is sick for years, and one ages, how are we to know what the older version of normal feels like?
I have read many, many studies of CFS. And this is my takeaway about the prognosis. Most people, if they are going to get better, get better within 2-3 years. Many of the best treatments seem to have recovery rates (better or all better) of 70% to 80%, though other treatments may have less success. Others seem to just spontaneously get better after about 10 years for some reason that is mysterious to me. One theory I have about this, for women, is that they get better when they hit menopause. It often happens around age 50, and hormone changes are implicated in CFS, so this could make sense. The remaining percent of people, probably 20% or less, get sicker and sicker over a long period of time. These are the worst stories we hear with this illness. People in this group improve their lives by learning coping strategies.
Even if someone is recovered, what does this mean? When I first felt recovered, after 2 years, I would probably put myself at about 80% of what I could do prior to falling ill with CFS (and fibro). But over several years, I have slowly gotten progressively better. Improvement at the margin seemed to happen in steps. Suddenly I would just feel better in some way, or some symptom that had been bothering me occasionally or some would go away. I think this may be because the body replaces different kinds of cells at different rates, and so it just takes a while to repair the damage and functioning of various parts of the body. Some may happen in days, some may take 10 years.
Only recently, 10 years later, do I really feel as if I might be totally recovered, back to 100% normal. But now, I am 12 years older, so my life and energy is a little more limited, because I'm getting older. It is not a fair comparison to expect to feel how I felt before I got sick 12 years younger. But here's the thing. I learned so much about how to live healthier that I actually often feel better now than I did before I got sick with CFS. That's the silver lining of the massive thundercloud that was CFS.
I know I still have an underlying vulnerability, and I still have to be careful about certain things -- not overdoing, being extra careful when illness is going around, etc. I have strategies to compensate, so maybe I just avoid what otherwise could cause problems. I try not to do too much hard work early in the morning, as my cortisol does not come up until late morning. I don't routinely work out as I am just too busy, so I don't push my body into possible post-exertion fatigue. I know when I need to crash and rest. Unlike earlier in my life, before CFS educated me, I now prioritize this need for rest, or for healthy food, or for specific supplements. I hear my body's pain and do something about it. I pay attention. So, yes, in that sense my recovery is a combination of disappeared symptoms and coping strategies.
But I firmly believe that recovery from CFS is possible, and very real alleviation of symptoms, and not just an adjustment via coping. Of course, not everyone will get that recovery, and it will be more complete in some than others. Coping is a useful strategy in the meantime, or for those who do not feel better.
It is my fondest wish that we will figure out what keeps some people in CFS and why in some it worsens slowly over time -- so we can reverse that for all.
Improvement and Adaptaion but NOT RECOVERY
|Posted by: IanH
Oct 25, 2012
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"I know I still have an underlying vulnerability, and I still have to be careful about certain things -- not overdoing, being extra careful when illness is going around, etc. I have strategies to compensate, so maybe I just avoid what otherwise could cause problems. I try not to do too much hard work early in the morning, as my cortisol does not come up until late morning. I don't routinely work out as I am just too busy, so I don't push my body into possible post-exertion fatigue."
This is not recovery it is adaptation and improvement. People with ME learn to live with it. They learn better how to live and as the author says learn a healthier way of living.
There are two steps,
1. Adaptation, which means accepting our limitations due to the illness, then learning the techniques of living within those limitations.
2. Improvement, where we constantly (with ups and downs) improve our abilities within the new set of rules.
I have never seen a person who has been cured. If someone says they are cured or recovered they always say what he above author says (what I have put in quotes).
This is a great improvement but not recovery.
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