A 2-year long study In the Journal of Pain regarding Fibromyalgia has found results that suggest that Fibromyalgia ebbs and flows. Makes me wonder. There are years where I wonder if treatment is failing me because things are so much worse and other times when I think what I am doing must indeed be working because the pain is getting a little better. Pain wise. Other things not so much. But then with other chronic illnesses in the mix, it is hard to say. Even with the pain, as in my joint pain from the hypermobility syndrome, that is always there.
Published online 2016 Jun 1.: 10.2147/JPR.S100043
There was previous research that had indicated 20-47% of diagnosed patients may not fit the criteria of FM 1-2 years after diagnosis. So this study looked further into this specific issue.
This cohort study followed 226 subjects recruited online to assess FM and chronic widespread pain (CWP) diagnosis stability over time. At enrollment (baseline), subjects provided informed consent, completed an online questionnaire consisting of the London Fibromyalgia Epidemiology Study Screening Questionnaire to screen for CWP (bilateral pain above/below waist lasting ≥1 week in the past 3 months), visited a site for physician evaluation for FM, and completed a questionnaire with validated patient-reported outcome instruments. Subjects were classified into mutually exclusive groups:
FM+CWP+ (screened positive for CWP and received physician diagnosis of FM),
FM−CWP+ (screened positive for CWP but did not receive physician diagnosis of FM), and
FM−CWP− (screened negative for CWP). Approximately 2 years later (follow-up),
subjects were reassessed at the same study site and completed a questionnaire with the same patient-reported outcomes.
76 FM+CWP (Chronic widespread pain) subjects completed the assessment; 73.7% met the follow-up definition. 20 patients no longer met the FM definition. 11 had become FM-CWP- and 9 became FM-CWP+. 10 transitioned into the FM+CWP+ group at follow-up and reported more tender points, pain interference with sleep and worse physical function at baseline compared to those that didn’t transition into this group. 76.7% of the patients who transitioned into/out of FM+CWP+ changed in chronic widespread pain, number of tender points or both.
The results suggest that some FM+CWP+ patients experience fluctuation in symptoms over time, which may reflect the waxing and waning nature of FM and affect diagnosis and treatment.
In one previous study, patient-reported improvements since diagnosis were correlated with younger age and shorter duration of FM symptoms at diagnosis.19 Prior research has suggested a link between the duration of exposure to FM pain symptoms and the amount of gray matter loss and rostral anterior cingulate cortex atrophy, respectively.37,38 In the current study, 26.3% of FM+CWP+ subjects identified at the baseline assessment no longer met the study definition at follow-up, and those who transitioned out of the FM+CWP+ group at follow-up had been more recently diagnosed at baseline than those who did not transition out of the FM+CWP+ group. A study conducted in London, Ontario, reported results comparable to those in the current study: 20% of the London population sample no longer met the study definition of FM 18 months after initial diagnosis.39 In an earlier 2-year prospective study of FM subjects, 47% of FM patients no longer met ACR criteria, and “remission of FM was objectively identified” in 24% of the sample.24 The results of published studies and the current findings suggest that some FM patients may experience short- or long-term remission of FM symptoms. The concept that FM is part of a larger continuum of central pain disorders identified as “central sensitivity syndromes” may play a part in symptom variation.
Essentially the result is this: we may experience short-term or long-term remission of symptoms. When I have no idea. I have never had a remission myself. However, the very fact FM is a central pain disorder, with central sensitization, and identified as a central sensitivity syndrome… may be the reason for its variability.
We cannot argue with FM variability though can we? It does certainly change over time. As well as daily. But certainly slower changes over time. In my personal experience, however, there has always been consistent widespread pain at the core baseline as well as specific joint pain. The variations I have always experienced have much to do with things like working the wrong job, that can cause tremendous increases in pain or having a medication have moderate results for a duration. Certainly, after I was diagnosed there was a time when all my symptoms got quite a bit worse, picked up speed as it were. Then levelled out to the amount I have been known to experience since then. I have had FM, officially, for 18 years and have never experienced a remission or a time of substantially less pain. Nor a time of substantially more pain over time, unless it was job-related. Generally, my baseline remains consistent aside from the general fluctuations of the condition itself and flares. Nevertheless, I can certainly see how it could be more variable. Given my response to work situations and the substantial pain that caused, I can think of other triggers that would likewise increase my pain and other lifestyle changes or better circumstances that would then decrease it. Given I have other pain conditions, it could simply be the pain is constantly aggravated neurologically by the existence of other chronic pain. I like the concept of this though. That the potential for remission or ebbs in the pain tide could in fact exist.
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