CRPS – An Advocate’s View

CRPS – An Advocate’s View

By Ed Coghlan.

With November being CRPS Awareness Month, we thought we’d check in with Gracie Bagosy Young, a well-known chronic pain advocate who has CRPS. She has contributed extensively to the National Pain Report in the past—helping us understand CRPS better.

The first item we were interested in was the progress that’s being made in making more people aware of CRPS. While she acknowledges progress, she also believes that people who have CRPS need to be educators too.

Gracie Bagosy-Young

Bagosy-Young: “Awareness is a huge term. Yes, we need to cause a stir in the public and in our exam rooms. But we, the people living with CRPS every day, need to become more aware of our treatment options as well. CRPS often leaves us feeling powerless. Arming ourselves with education on our options (even beyond the exam room) allows us to take the wheel and steer our own destiny. This is the kind of awareness that I am primarily interested in. Empowerment.”

One problem has been physician education. Many doctors—particularly primary care physicians and ER physicians don’t really understand CRPS and often don’t diagnose it.

Bagosy-Young: Most family physicians do not even know what CRPS is. It is extremely important to get to a real Pain Management Physician that has actually been trained in the treatment of CRPS. RSDSA offers an educational program. Regarding the ER, unless I am worried that I will die, I do NOT go to the ER! Even then, I go equipped with information on CRPS and I am ready to fight for myself. At this point in time, the ER is not a place for us!

The political atmosphere around chronic pain treatment has been trying for the chronic pain community. The lack of a National Pain Strategy implementation, the pressure on opioid prescription without a parallel strategy of how to treat those who depend on them and the general malaise that is affecting the chronic pain community is something she’s noted. She indicated she could go “on and on” about the politics of chronic pain, but she decided emphasize a practical solution.

Bagosy Young. “It would be nice to see our Administration utilize Pain Management Physicians when making decisions that affect people with chronic, incurable pain.”

You can follow Gracie Bagosy-Young on Twitter @GracieBagosy. Here is a link to her website.

For more information about CRPS, check out the RSDSA site.

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Authored by: Ed Coghlan

There are 2 comments for this article
  1. Rick at 8:16 am

    Where is the Medical Community? I would think there might be a few with integrity left but, unless it makes them money or protects there money,… they could care a less. Why I ask is it OUR responsibility to fight for science?

    I’m too tired to fight.

    Rick
    Late stage CRPS full body
    Dystonia

  2. Carl S. Dunn at 6:43 am

    For over 30 years I have worked at a major defense industry building aircraft all the while taking the pain medication that allowed me to function as a “normal” human being with dignity. Now, however, anyone who uses opiates to function as a useful part of society is viewed as a pariah, weak and looked down upon. And if management know I was taking a prescribed drug, it was possible my work would come under review due to the critical nature of the work required. Critical measurements and exacting detail. So, I feared everyday I might be called to task. Nevertheless, I performed perfectly as I felt I must due to the circumstances. The point is, the world view here in the U.S. is skewed toward hysteria towards drug use of any kind that might influence work performance, and even though we users who never abuse drugs, we do fall under this category. I retired and weaned off OxyContin, methadone, suboxone and tramadol in that order by slowly tapering off over months. For those who absolutely must have relief through opiates, you may never stop needing powerful opiates due to the intractability of your pain. I was very lucky in that when I stopped working I was able to find relief and to a great degree no longer needed the drugs to function. The mass media hysteria is destroying our system that absolutely allowed a doctor to give truly needy pain patients what they needed to function. Our great society has been influenced and it’s intellect been reduced by sound bites, half-truths and little bits of Kardashian-like excrement for greater viewership on the television and political expediency to garner votes of mostly ignorant voters who are suckered in by this irresponsible rhetoric. Only by forming a coalition of informed participants who will lobby legislatures to stop the willful maligning of vulnerable chronic pain patients who are at the mercy of an insane policy to reduce use of opiates given of CPP’s by the politicians who are riding this wave of ignorance in making public policy. Threaten their next election by calling or writing these legislatures and plead your case or you will with-hold your vote for them. It is the only way to make them listen!

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