CRPS Patients: These Are the Best Tips to Take to the ER

When you have a rare disorder like CRPS, or Complex Regional Pain Syndrome to the uninitiated, going to the emergency room can rival Alice’s adventures in Wonderland.

First of all, few members of the ER staff are aware that CRPS exists, and secondly, they may be reluctant to treat your pain. One physician is seeking to change that.

Mean nurse, unsure of how to treat CRPS.
Welcome to the ER. You’re fine. GTFO.

Dr. Billy Alexander’s daughter was injured while playing college volleyball, and as a result developed CRPS at the age of 21.

Dr. Alexander has seen firsthand the difficulties his daughter has faced, and knows that some doctors may not believe in the validity of the CRPS diagnosis. As a result, they are reluctant to treat the patient’s pain, so he actively educates his peers. One of his messages for ER doctors is that ketamine injections can be successful in treating pain in the ER setting, and that CRPS is real.

Unsure of how to treat CRPS, nurse gives patient 2 tums.
Having severe abdominal pain. Gives you 2 tums.

But what can you, as a patient, do? You can print this article, Tips for Managing Complex Regional Pain Syndrome by Jim Ducharme, MD, CM, FRCP, and give a copy to the ER doctor who is treating you. Another action you can take is printing two copies of ER Protocol Tips. Make at least two copies: Tape one copy to the inside door of a kitchen cabinet so that you have easy access to it and can follow the patient directions (such as bringing all of your medications with you to the ER), and one you can give to the ER doctor.

It is also a good idea to have documentation handy from your treating physician regarding your ongoing pain management and your diagnosis. It is hard enough to advocate for your own care, and even harder when you’re totally stressed out and in pain.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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