Background The project “Listening to Pain- un dolore da ascoltare” is a multidisciplinary and multifactorial project addressed to women with Fibromyalgia.
Fibromyalgia pain has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Quite often, the pain and stiffness are worse in the morning, and muscle groups that are used repetitively may hurt more. Pain in every muscle and the profound exhaustion are not symptoms that people can see, but they are real and may be devastating for the person with Fibromyalgia. Although the invisible nature of the condition causes credibility dilemmas for patients.
Objectives The project aims at improve the quality of life of women with Fibromyalgia. It has the main following objectives: provide information about Fibromyalgia, raise public awareness, collect useful data for research development, give support to the person, reinforcing social networks, provide mediation of the recognition process and bio-energy structured exercise activities and classes tailored to symptoms (stiffness and fatigue) useful in boosting endurance times.
Methods The project was launched in 2015 with a communication campaign and supervised by a group of psychologists promoting the use of humanistic bioenergetics therapy for individual consultations and collective supporting group of discussions. Participants were 50 women with a confirmed diagnosis of FMS.
In June 2015, APMAR founded its first “Group for Pathology” and launched new tools as the info point and the toll-free number.
The project includes: psychological support to women suffering from Fibromyalgia, self-help groups where women talk, meet, discuss the pain and jointly organize events and other projects; information, through the creation of brochures and different kind of materials; an info-point managed by APMAR and a toll-free number that provides information and immediate help for women feeling lonely.
Results The psychological and physical well being of women with Fibromyalgia syndrome were enhanced by social support. Chronic Pain, depression, self-efficacy, helplessness, mood disturbance, health status, impact of FMS, were improved. Psychologists involved in the project observe a decrease of depression, greater security and openness in relations. Women started processing and overcoming the sense of loneliness and isolation, increasing knowledge and therefore awareness, acceptance of the disease.
Analyses indicated that the created social support networks were associated with greater levels of self-efficacy for pain and symptom management, higher levels of self-efficacy for function and symptom management, as well as overall psychological well being.
Conclusions This multilateral approach was very empowering and consented women to work in the same direction to improve healthcare outcomes for people in their same conditions.
Furthermore, it helped women with Fibromyalgia get more control over their life, and promote understanding of patient empowerment. The project was also a call for action not only among patients and health professionals, but among several kinds of social groups of students, press, local policy makers and other civil society organizations.
APMAR National Association of People with Rheumatic and Rare Diseases - firstname.lastname@example.org.
Disclosure of Interest None declared