how to live with constant pain

The article explores how sensations of pain are turned into embodied knowledge in endometriosis, a chronic gynaecological illness characterized by persistent, possibly paralysing pain. While previous studies have shown how people with endometriosis struggle to achieve accurate diagnosis and effective treatment, we examine the ways in which some of these difficulties are rooted in the complexities of embodied experiences of endometriosis pain and the challenges of translating the sensed patterns and shifts in pain into a language acknowledged within a clinical setting...

BACKGROUND: Previous studies have shown positive tangible health benefits from using online support communities for informational support, daily living support, and emotional support. The specifics of how these communities can be improved have not been studied in detail. OBJECTIVE: This study will investigate various sources of information that patients with genetic disorders use to learn more about their condition. We will be using patients with Ehlers-Danlos Syndrome (EDS) as a typical representation of the wider group of patients with genetic disorders...

RATIONALE & OBJECTIVE: Despite its prevalence and distress to patients, chronic kidney disease-associated pruritus (CKD-aP) is poorly characterized, which may contribute to the condition's underdiagnosis and inadequate management. This study aimed to understand the symptom experience of patients with CKD-aP and the extent to which pruritus impacts their lives. STUDY DESIGN: Mixed methods study including one-on-one qualitative interviews and completion of the Skindex-10 Questionnaire (measuring itch-related quality of life)...

PURPOSE: To provide perspectives from heterogenous cisgender immigrant women and service providers for immigrants in New York City (NYC) on how restrictive sexual and reproductive health (SRH) care delivery environments during COVID-19 shape immigrant's access to health care and health outcomes to generate insights for clinical practices and policies for immigrant women's health care needs. METHODS: A qualitative study was conducted in 2020 and 2021, including in-depth interviews with 44 immigrant women from different national origins and 19 direct service providers for immigrant communities in NYC to explore how immigrants adapted to and were impacted by pandemic-related SRH care service delivery barriers...

BACKGROUND: Gout results from disturbed uric acid metabolism, which causes urate crystal deposition in joints and surrounding tissues. Gout pain management is largely limited to colchicine and nonsteroidal anti-inflammatory drugs. Constant usage of these medications leads to severe side effects. We previously showed electroacupuncture (EA) is effective for relieving pain in animal model of gout arthritis. Here we continued to study the mechanisms underlying how EA alleviates gout pain...

OBJECTIVE: This work contributed to the development of a core outcome set (COS) for heavy menstrual bleeding (HMB). The objective was to determine which research outcomes best reflect how HMB affects women's lives and to identify additional research outcomes, not previously reported. It was important to explore and record participants' reasoning for prioritising outcomes and use this information to reinforce the patients' voice during later phases of the COS development. DESIGN: Patient workshop discussions and telephone interviews...

INTRODUCTION: Chronic pain is a common health problem that can have a significant impact on children and young people's daily life. Although research on pediatric chronic pain has been a priority globally, little is known about young people's experience of chronic pain in Saudi Arabia. Thus, this article reports on young people's experience of chronic pain and the impact on their lives in Saudi Arabia which forms part of a larger study. METHODS: Multiple case study design following Yin's (2018) approach was used...

Experiences of racism occur across a continuum from denial of services to more subtle forms of discrimination and exact a significant toll. These multilevel systems of oppression accumulate as chronic stressors that cause psychological injury conceptualized as racism-based traumatic stress (RBTS). RBTS has overlapping symptoms with posttraumatic stress disorder (PTSD) with the added burden that threats are constantly present. Chronic pain is a public health crisis that is exacerbated by the intersection of racism and health inequities...

BACKGROUND: Little is known about the experience of Black individuals with cancer taking long-acting opioids for cancer pain. OBJECTIVE: This study aimed to describe the day-to-day experience of living with pain and the experiences of taking opioids for pain management among Black individuals with cancer prescribed with long-acting opioids. METHODS: This qualitative descriptive study was part of a larger investigation focused on opioid adherence...

Mobile health can fulfill the unmet needs of patients with chronic low back pain by recommending individualized management plans. Limited mobile applications have been developed based on the needs, preferences, and values relative to self-management of patients with chronic low back pain. This study aimed to explore the experience of patients with chronic low back pain and the desired content, designs, and features of a self-management application. We conducted five focus groups (N = 24). Participants provided feedback on draft contents and they also discussed the desired designs and features of an application while reviewing a low-fidelity prototype...

BACKGROUND: Osteoarthritis (OA) is one of the most debilitating diseases, and a patient with a reconstructed knee could develop it early and lives with this condition for an average of 30-years. Furthermore, most studies focus on short-term results, not long-term. The purpose of this article is to show how a patient with reconstructed knees and OA improved clinical outcomes using the Pilates Method (PM) in the long term. METHODS AND MATERIALS: The patient was treated with common medical treatment for 10 years and then treated with the PM for 15 years...

INTRODUCTION: Experiences of illness change the physical body and embodiments, or the ways in which the world and the self are known through the body. When illness is anticipated, such as with inherited cancer predisposition syndromes, risk becomes embodied and shared in family groups. Embodied risk is experienced whether or not symptoms have manifested. To examine how individuals and families with genetic risk experience the world and understand their disease through their bodies, we employ Li-Fraumeni syndrome (LFS) as an exemplar...

PURPOSE: To explore the life experiences of pain in people with severe haemophilia and understand how such experiences influence beliefs and sensation of pain in adulthood. METHODS: A qualitative inquiry approach using focus groups and semi-structured individual interviews was used. Participants included people with severe haemophilia living with chronic pain. Data were analysed using reflexive thematic analysis. RESULTS: Fourteen men with a median age of 47 (range 23-73) agreed to take part...

Background: People with chronic pain often seek support from friends and family for everyday tasks. These individuals are termed informal caregivers. There remains uncertainty regarding the lived experiences of these people who care for individuals with chronic musculoskeletal pain. The aim of this article is to synthase the evidence on the lived experiences of informal caregivers providing care to people with chronic musculoskeletal pain. Methods: A systematic literature review was undertaken of published and unpublished literature databases including EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials...

Nociceptor sensory neurons innervate barrier tissues that are constantly exposed to microbial stimuli. During infection, pathogenic microorganisms can breach barrier surfaces and produce pain by directly activating nociceptors. Microorganisms that live in symbiotic relationships with their hosts, commensals and mutualists, have also been associated with pain, but the molecular mechanisms of how symbionts act on nociceptor neurons to modulate pain remain largely unknown. In this review, we will discuss the known molecular mechanisms of how microbes directly interact with sensory afferent neurons affecting nociception in the gut, skin and lungs...

In preparation for the advent of a super-aged society in 2025, it is urgent to establish local comprehensive care systems appropriate to the characteristics of the area, so that people can live out their lives as they choose in their own homes. As we move toward a society in which many people are aging and dying at the same time, it is clear that pharmacists will increasingly attend home-care patients during their final days. Our pharmacy had 295 approved home-care patients over the 10 years from 2007 to 2017, of whom 64% (189) had cancer and 36% (106) had other illnesses...

OBJECTIVES: Children with inflammatory bowel disease (IBD) are at increased risk for poor mental health. The etiology of this risk is not clear, though may be related to the disease, its treatment, and/or the experience of these. We sought to describe the challenges that children with IBD and their families face in living with a chronic condition and undergoing repeated intravenous infusions; and identify coping mechanisms to understand how medical systems may support resilience. METHODS: Semistructured qualitative interviews with 18 patient-guardian dyads at a tertiary outpatient infusion center, explored feelings related to IBD, the infusion process, and coping...

OBJECTIVES: This study aimed to explore the views and experiences of a group of Spanish patients suffering from new daily persistent headache (NDPH). METHODS: A qualitative descriptive study was conducted with patients diagnosed with NDPH. Purposeful sampling was performed among patients attending a specialized Headache Unit at 2 university hospitals between February 2017 and December 2018. In total, 18 patients (11 women, 7 men; mean age 45.3, standard deviation 10...

As the number of breast cancer survivors increases, these patients with sexual problems also increase. For breast cancer survivors, sexual problems are a common and painful experience. Although breast cancer survivors often encounter sexual problems, Taiwanese women are culturally conservative and patients rarely discuss sex problems with clinicians. In this study, we used qualitative methods to better understand the changes in sexual life and related care strategies for breast cancer survivors. Twenty interviews were conducted on clinical patients enrolled in hospitals that received breast cancer treatment...

In a globalized world health and illness know no frontiers. Pandemics have never been limited to political borders and the contemporary campaigns to prevent them can be effective only when addressed not only internationally but also with the application of integrated disease management in order to respond to problems caused by the silo approach. In any case, it appears that global health has been constantly in redefinition. With this commentary a phenomenological redefinition of global health is proposed as an integrative strategy...