Fibromyalgia & Chronic Pain
Organized by: Stephanie M.
I would like to create a website dedicated to fibromyalgia patients. A source of information on the latest research, medications, books, etc. There is a lot of information accessible online, albeit not always accurate and sometimes frankly misleading. In addition to communicating accurate information,
I would like to start a blog and open it to the FM community. A forum where patients could read about stories, speak about their own experience and break the circle of isolation that comes with such a debilitating syndrome. It is an invisible condition, isolating in nature because, isn't it hard to relate to someone experiencing constant pain? What do you say to say, how can you help when you don't understand it yourself? Just like addicts and their families have a support system in place (i.e. AA), I would like to provide the same type of environment to FM patients in an online setting so that day they are down and life seems unfair and impossible to bear, they have somewhere, someone to turn to. You will find more details about FM below:
What is Fibromyalgia?
Fibromyalgia is a central nervous system disorder that touches millions of people, mostly women (3-5% of the US population). It is a complex chronic pain disorder that affects an estimated 10 million Americans. For those with severe symptoms, fibromyalgia (FM or FMS) can be extremely debilitating and interfere with basic daily activities. Some studies claim that suicide rate among FM patients is 10 times higher than the normal average. When asked if it is a terminal condition, a lot of them answer (or would like to answer), no, but I wish it were. 1/4 of FM patients are on disability leave.
What are the symptoms?
Although chronic, widespread body pain is the primary symptom of fibromyalgia, a variety of other symptoms are also part of FM patients' daily routine: moderate to severe fatigue, insomnia, problems with cognitive functioning, IBS, heartburn, headaches and migraines, vertigo, environmental sensitivities (e.g. odors, noises, light, etc.), and trouble regulating body temperature. Anxiety and depression usually become an emotional symptoms of the condition as well.
The onset of FM is still unknown at this time. Recent research have suggested a strong genetic basis for FM. Others think it can occur following a physical trauma (especially a neck injury), such as an acute illness or injury, which may act as a “trigger” in the development of the disorder.
There is no cure for FM and very limited treatment.
Without a cure in sight, doctors and patients collaboratively work on pain management, sleep management, and psychological support. Symptoms are addressed separately which can lead patients to take a significant number of very powerful medications on a daily basis. Note that since the pain is triggered by a response of the central nervous system, pain killers have little to no effect.