Chronic Pain Sufferers Skeptical of Their Government

This survey of chronic pain sufferers is interesting. My only surprise is that some of the statistics aren’t closer to 100% of pain sufferers! I’m bolding a few things I found most interesting, including the link if you would like to participate in the survey.

Chronic Pain Sufferers Skeptical of Their Government

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Readers of the National Pain Report are skeptical about their government and its role in pain management.

In April, we asked them some basic questions about the state of pain management today, and since almost all (99%) who answered online described themselves as chronic pain patients, their frustration was palpable.

When asked if the pain patient is being adequately considered in the discussion of how to address the chronic pain issue in the United States, more than four out of five (81%) said they either moderately or strongly disagreed.

When we asked about government’s role, the skepticism we mentioned was in full flower:

84% said that federal regulatory agencies like the Food and Drug Administration and the Drug Enforcement Administration are part of the problem in chronic pain treatment, and 72% said the same about elected officials.

Reader Nancy Ribok lamented the lack of education in pain management when she wrote, “doctors need to be educated on pain management, and doctors need to educate patient about pain medication and how and when to use.”

Readers who participated were less critical about their own physicians. They were equally split on whether their doctor was part of the solution (33%), part of the problem (26%) or both (27%)

We asked about the National Pain Strategy which represents “the United States first strategic plan for transforming and advancing pain care, education, research and prevention,” according to Dr. Sean Mackey, Chief of the Division of Pain Medicine at Stanford University’s School of Medicine.

The question was: “Is the National Pain Strategy asking the right questions about how to address the pain issues in the U.S.?”

Half agreed and half didn’t.

“I understand the guarded skepticism that the person living with chronic pain has about the state of pain management today and of the National Pain Strategy,” said Dan Bennett, M.D. who is Chairman of The National Pain Foundation. “However, if we are going to have the needed global conversation about acute and chronic pain, the participation of the person living with pain and those who are concerned for them is crucial.  Pain is personal.  The conversation must start; it is long overdue.  The National Pain Strategy should be thought of in that context.   We urge people living with pain, those who care about them, and advocate groups in all areas to actively participate in the public comment process.”

The National Pain Report conducts occasional readers’ surveys to gauge reaction (and also to help decide what topics to cover).

Reader Beth McDonald had a message for us and other media members when she wrote on coverage of the pain medication issues:

“To the media I would try to report on a chronic pain sufferer to enlighten the public on how pain sufferers try every possible means of pain relief before needing pain medication and why it is so vital to many in order to function.”

The people who answered the survey were mostly women who listed back pain (78%), Fibromyalgia (46%), Neuropathy and Osteoarthritis (both 44%) and Migraines (37%) as the leading causes of their pain.

We will leave the survey open for a while longer, in case you want to participate (click here)

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FDA Survey on Chronic Pain and Fibromyalgia

The National Fibromyalgia & Chronic Pain Association and the FDA are teamed up to perform a survey targeting people who suffer from fibromyalgia and chornic pain. I took the survey this morning and it takes about 15 minutes. I urge everyone who suffers from chronic pain to take the survey. A lot of the questions deal with where we experience pain, the intensity of pain, triggers for our pain, and what non-pain symptoms of fibro/chronic pain trouble us the most (after the non-stop pain of course). There’s a comments space at the very end where I let loose on my anger at the FDA for making it harder for us to get the pain medications we need to manage our disease. I ranted about the assumption that everyone who takes these medications must be an addict and it’s not possible to take these medicines responsibly, as directed by a doctor (such BS!). I’m glad there wasn’t a character limit on that field because I had quite a bit to say since I had the opportunity to get on my soap box. I am hopeful that the FDA will seriously consider the responses they get on this survey and use them to redo the rules on the medications we need to cope with our pain. Are doctors should not be afraid to prescribe certain medications to us out of fear of the FDA.

Please take a few minutes and answer this survey. Maybe it will help us out in the long run. At the very least, I enjoyed ranting in the comments field. 🙂

Take the NFMCPA/FDA Survey