Searching for Answers to Migraines

Searching for Answers to Migraines By Kathleen Hoffman, PhD, MSPH Migraine headaches can be devastatingly debilitating: When my migraines get so bad, I stare at the wall in complete silence not letting my head touch anything. If my head touches something, it will send more pounding pain throughout my skull. Migraines are a widespread source of disability worldwide, with one systematic review of US government health studies finding 15.3% of Americans reporting a severe headache or migraine in the past three months.1 Three percent of all emergency room visits are for severe headache. Treating them remains difficult, [...]

Suffering Through the Opioid Crisis: The Language of Chronic Pain

Suffering Through the Opioid Crisis: The Language of Chronic Pain By Claire Harter, MA Market researchers in the pharmaceutical industry need to know their audience - their unmet needs, language, and experiences. Recent research in chronic pain at Inspire reveals the lexicon of chronic pain patients and their experiences with treatment. Pain Management History Documented widespread under-treatment of pain was a major medical health problem prior to the year 2000. The World Health Organization’s Cancer Pain Monograph detailed poor pain management of cancer and post-operative patients in 1986. Multiple publications throughout the 1990s on inadequate assessment [...]

Getting Told You’re Making It All Up: Lupus

Getting Told You're Making It All Up By Kathleen Hoffman, PhD, MSPH Imagine going to see a doctor when you’re exhausted and enduring multiple kinds of pain, and they recommend a “psych” evaluation. When they “can’t find anything,” the medical professional you looked to for help decides you must be making it up. Many patients with conditions that mimic other disorders describe facing this challenge. Systemic Lupus Erythematosus (SLE or lupus) is one such condition. Members of the LupusConnect Support Community on Inspire describe going through Herculean efforts to find help, only to be disbelieved, or, [...]

Warring Parties: Voices of Patients in Pain Vs. “Opioid Crisis”

Warring Parties: Voices of Patients in Pain Vs. “Opioid Crisis” By Sara Ray So many of us have pain management issues. We are fighting the doctors and the state laws and the insurance companies. The "opiod [sic] crisis" is an illegal drug problem; it is not a prescription problem for chronic pain patients. However, we are the ones who suffer. An increasing majority of doctors are scared to prescribe. I am scared every time I go for an appointment because I am afraid they will cut back my medication. ~Inspire member In July 2018, Kathleen Hoffman, Senior [...]

Video Vignettes: Through Their Own Lens: Neurofibromatosis

Video Vignettes: Through Their Own Lens: Neurofibromatosis Our “Through Your Own Lens” initiative invited members to share their personal stories through short videos. Patients have been describing their disease history, their feelings about their disease and thoughts about Inspire. Living with Neurofibromatosis Neurofibromatosis is a condition affecting the nervous system, causing tumors called neurofibromas to grow along nerves and under the skin. The two types are called neurofibromatosis type 1 or NF1 and neurofibromatosis type 2 or NF2. NF1 is the most common, occurring in 1 in 4,000 births while NF2 occurs 1 in 40,000 births.1 Caused [...]

Video Vignettes: Through Your Own Lens – Living With Invisible Disease

Video Vignettes: Through Your Own Lens - Living With Invisible Disease Looking "well" is a common challenge among people who live with invisible illnesses and chronic disease.  Some call themselves “spoonies”: people who hear “but you don’t look sick” throughout their lives, while actually managing serious illness.  The term “spoonie” comes from a blog post written in 2010 by Christine Miserandino called The Spoon Theory.1  In this post, Miserandino, who has lupus, described how she was able to help her best friend understand life with a chronic illness. To tell the story briefly: Holding 12 spoons, Christine [...]