Severity of symptoms persists for decades in fibromyalgia—a 26-year follow-up study

The aim of this study is to find out the outcome of 28 patients who got the diagnosis of primary fibromyalgia (pFM) 26 years ago. In 1986, 56 patients with widespread pain were examined and filled in a base questionnaire (BQ). Of them, 42 fulfilled the Yunus criteria for pFM. Twenty-six years later, addresses of 38 patients were found, and an extensive follow-up questionnaire (FupQ) was mailed to them. Of them, 28 (74%) answered the FupQ. This included nine identical questions with the BQ and questions concerning changes in their symptoms and quality of life (Qol). Three patients (11%) had healed from fibromyalgia (FM), and 23% reported having one or several symptomless periods lasting at least 1 year. In others ( n = 25), all but pain and ache showed slight deterioration. Despite the aging and FM, the level of functional ability evaluated by Stanford Health Assessment Questionnaire (HAQ) remained at the same level (BQ 0.41 vs. Fup 0.44, p = 0.82). The sum score of reported symptoms ( n = 21) did not change significantly (10.8 (SD 2.9) vs. 11.1 (SD 4.1), p = 0.75). Experienced sleeplessness increased most significantly (27 vs. 65%, p = 0.0034). Exercising did not have a significant influence on the changes of the measured parameters. However, the three healed patients exercised regularly. Symptoms of FM have persisted in most patients for decades without significant deterioration of self-reported functional ability. About one fourth of patients had experienced long symptomless periods during their illness. Three patients (11%) reported that they have healed from FM.