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.

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.”




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