The National Pain Foundation (NPF) has announced it is conducting an online survey asking fibromyalgia patients about the quality of their treatment and whether the drugs they’ve taken are effective. The survey will be conducted online on the National Pain Report.
The NPF is building a global digital community of pain sufferers and their families to transform how pain is understood, assessed and treated. One and a half billion people worldwide suffer from chronic pain.
The survey is designed to be taken by people who have fibromyalgia.
It will explore a number of areas including:
- Is your physician knowledgeable about fibromyalgia and does he or she take your symptoms seriously?
- Do family and friends take your fibromyalgia seriously?
- Rate your experience in taking the three main prescription medications for fibromyalgia: Cymbalta, Lyrica, and Savella.
- Have you ever used medical marijuana to treat fibromyalgia and how do you rate its effectiveness?
The survey will also ask for some brief commentary from the fibromyalgia patient to share anything they have found effective in relieving their symptoms, as well as sharing what the “worst part about having fibromyalgia” is.
To take the survey, click here. Results will be announced by the NPF in mid-April.
According to the Mayo Clinic, researchers believe that fibromyalgia amplifies painful sensation by affecting the way the brain processes pain signals. Often, it strikes more women than men and can result in fatigue, sleep, memory and mood issues.
For additional perspective, this is how the National Institutes of Health describes the condition.
“About 6 million people are affected by fibromyalgia in the United States alone. They have a hard time getting enough, yet alone, accurate information,” said Dan Bennett, MD, Chairman of the National Pain Foundation.
“People living with fibromyalgia are often misunderstood by those who treat them, so this survey gives us a great opportunity to really assess what people living with the disease experience.”
Fibromyalgia has been a consistent topic for the National Pain Report. Recent stories include a controversial new blood test for fibromyalgia, as well as a report on the effectiveness of the three drugs prescribed to treat fibromyalgia. The fibromyalgia survey was developed after an onslaught of reader comments to our reporting on the topic.
“When we do a story that involves fibromyalgia, it always generates a lot of interest,” said Pat Anson, Editor of the National Pain Report. “This survey is an excellent opportunity to drill down and get some important data from the patients about how they view their diagnoses, the drugs they take, and the way they are treated.”
This NPF survey isn’t the only outreach to fibromyalgia patients in March. The Food and Drug Administration has scheduled a hearing in Washington D.C. on March 26th to learn from patients how fibromyalgia impacts their daily lives and their views on currently available therapies to treat the condition. This is a rescheduling of a meeting originally planned for December 10, 2013. For more information on the hearing, click here.
The National Pain Report will cover the FDA hearing and will also report on the results of the NPF Survey when it’s released in mid-April.
The results from NPF’s first survey were released on March 11th, and indicated that pain patients aren’t terribly happy with their physicians and less so with their pharmacists. To see the results, click here.