Fibromyalgia Patients: Tell Us What We Should Know

Fibromyalgia Patients: Tell Us What We Should Know

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.

NationalPain&Report_logosThe 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.

bigstock-Woman-with-a-painful-headache-27249356According 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.

Authored by: Ed Coghlan

There are 6 comments for this article
  1. Val at 11:22 pm

    This maybe not what you want to read but nobody wants to hear. My husband is so sweet. He is the only one that listens to me and that is big! I was diagnosed when I was 23 but I know I had this when I was in Jr. high. Okay, but enough is enough, I seriously can’t do it anymore. I can’t sit to use a computer so I type on my iPhone. I can’t hold my phone up with arm pain neck and mid back and lumbar pain. It is so painful it takes my breath away because it is sooooo intense weakness that makes me shake and in the same place numb ness but mostly extreme pain.. I was diagnosed34 years ago and in the last year it has aged me by many years. I need real help or I won’t be around for long. Please someone can you help in any way? I would be ever so grateful. I do a lot of talking to God about this, maybe that’s why I am here, on this page. Please help! Val

  2. Kathy at 9:54 pm

    This is a hard question to answer. So many people with chronic pain are different. What helps one. doesnt help another. Fibromyalgia affects everyone different also. From my own self, Drs. need to be more informed on treating chronic pain. My doctor is a good dr. But on my pain, he doesnt seem to know many answers. I look up on internet medicine I think might help, then tell my doctor what to try. Since I know where I hurt and my signs are. He trys to help as much as he can. I dont think pain meds. should be taken away from patients, unless they abuse it. If pain meds. are taken away or limited, more people will suffer, most tell me the meds for fibromyalgia doesnt take tbeir pain away, just takes the edge off it.They still have bad flareups.Those meds.are cymbalta, lycria, and savella. So some get relief, others dont so much! There needs to be more study done on fibormyalgia. The causes and the treatment, and doctors more informed on thr issue..chronic pain needs a medicine which isnt habit forming, but helps with the pain.

  3. joe courtois at 5:58 am

    I live in Sullivan, Missouri a place where docs think they are god. When u go to doc around here and say pain it’s time for u to leave cause they don’t want to hear that word. I myself get looked at as just looking for drugs but I really can’t stand the side effects but I take what I need just to get through the day. Since dea labeled everyone as dope heads just cause they want relief from the pain don’t mean ppl that proves they have problems should get what they need. The docs always say “no them are addicting I can’t give u those. Well so is that soda or that coffee they have to have in the mornings lots of things are addicting but they still do it. My point is WHY do we have to continue to suffer if it helps us let us have it and regulate us not take it away all together. I mentioned fibro to my doc (after lots of research) and I got the answer I was expecting, it’s about controlling ur nerves so here’s a pill that we don’t know if it will help u or not but it takes 2-4 weeks to work but u can’t have the one we know works. The oath docs take is b.s. any more cause seems they want u to suffer instead of regulate. It wasn’t the patients that caused addiction it was the docs that were handing out scripts without just cause so now the patients suffer.

  4. Carol Gartenlaub at 5:24 am

    My family thought I was having something emotional. They did not think I
    Was really having pain , and could not move. They have me on Lyrica, and cymbaltea. I still have trouble .

  5. dave at 7:54 pm

    Dr Bennett is right to point out that people with fibromyalgia lack accurate information-and that is part and parcel of pain care system in the U.S. Nonetheless, many people with fibro have shared their experience and knowledge on the Internet which provides a more accurate account than “the received view”. I hope that information in blogs, twitter, facebook, etc will continue to evolve and grow with regard to fibromyalgia.
    I do not believe in the neurocentric theory of fibromyalgia pain. The energy crises theory makes more sense to me.
    The research on fibromyalgia is clearly lost and in need of overhaul. It suffers from too much incoherentism. It truly is an example of the blind men looking at the elephant.

    New models and approaches are needed to better understand and address fibromyalgia. The neurocentric model is now popular- for medicine has failed with the traditional biomedical model and wish to see painful conditions as a result of a defective brain/mind/personality. And so medicine, once again, stigmatizes people in pain by trying to define fibromyalgia as a result of a defective mind- which is a thinly veiled way of saying that people with fibromyalgia have a defective personality. And so when medications for fibromyalgia dont work or dont work well medicine can explain it away as the result of the defective personality of the person with fibro. And we know that, despite no real understanding of cbt or the work of Albert Ellis the pain specialists have labeled all people in pain as “catastrophizers”. And having worked with hundreds of people in pain my experience has been that just the opposite is true. The people in pain I have personally met are anything but catastrophizers. Researchers in pain obviously don’t know that even animals try to hide their pain-and so do most pain sufferers in sophisticated ways.

    It is unfortunate, that fibromyalgia remains in many respects a “contested illness” and the doubt doctors still cling to when it comes to fibromyalgia is contrary to their Hippocratic Oath of “comforting always”.

    I don’t think the FDA can truly “hear” the concerns of people with fibromyalgia for their “experts” listen from the wrong viewpoint and therefore can only hear what they have been trained to hear. When it comes to fibromyalgia-they may try to hear “the cry of suffering organs”, but not the persons attached to those suffering organs- after all, the FDA’s mission is not to be empathetic toward people in pain. Need I say doctors,also, are trained to be objective and not empathize or sympathize with people in pain? How many times must we hear how insensitive doctors are toward fibromyalgia before we realize that they and those that regulate their profession are too far removed from the needs of people with fibromyalgia. Like i said before pain care is dead in America- long live pain care!