CRPS to Emergency Room Physicians – “Understand and Treat the Disease”

CRPS to Emergency Room Physicians – “Understand and Treat the Disease”

Complex Regional Pain Syndrome – known best as CRPS – is still a chronic pain disease that often goes underdiagnosed.

Dr. Billy Alexander, an internal medicine physician from West Monroe, Louisiana understands.

“Surprisingly, some physicians are somewhat skeptical about it,” he said. “But I know it’s real.”

Alexander knows CRPS is real because his daughter injured her hip as a 21 year old varsity college basketball player and developed it. It taught him much as both a doctor and a father.

He since has developed a relationship with the RSDSA which supports the CRPS community and has become vocal in helping educating physicians and other medical providers about it.

Dr. Alexander takes his message to the American College of Emergency Physicians annual meeting in Boston this week. He’ll be in the RSDSA booth meeting with as many emergency room physicians as he can.  As a former E.R. physician himself, Alexander has two messages for the emergency room doctor.

  1. Understand that CRPS is Real
  2. Ketamine injections may help in treating CRPS

More on ketamine in a moment.

First, there is the diagnosis.

48-year old Linda Avallone of North Royalton, Ohio has had CRPS since 2011 and she knows the challenge that an emergency room setting can pose for CRPS sufferers.

A year ago, she had to go to the emergency room. She had suffered a Transient Ischemic Attack, which presents as a stroke and the patient is often disabled for a temporary period of time.

“I was in the emergency room and was babbling,” she said. “But I was trying to tell the doctors and nurses who treated me that I had CRPS, and kept pointing to my bracelet.”

But the doctors and nurses weren’t listening at first. After the TIA symptoms subsided, she tried to explain her CRPS.

“They were treating me like a drug seeker,” she said. “I was so frustrated.”

A paramedic was able to finally clear it up for the ER staff, but Avallone had sat in the ER for ten hours, with no pain medication. Because she her medical power of attorneys were finally able to talk to the pharmacy, finally they relented.

“Doctors and nurses should actively listen and don’t assume that the patient is nothing other than someone seeking pain medication,” she said.

Avallone actively educates medical providers and other who come in contact with the public like policy and EMTs through her work with the Ohio Fire and Ice Angels.

“It can help stop the stereotyping that we have to endure.”

Chronic pain advocate Gracie Gean Bagosy, who also writes for the National Pain Report, had a similar experience to Avallone’s.

“I recommend everyone with CRPS keep copies of the RSDSA CRPS ER Protocol and Hospital Protocol with them at all times. I keep copies in my purse,” she said. “These documents contain an easy to understand explanation of what CRPS is along with instructions on how you should be cared for. Be sure that your loved ones know where these documents are in the event of an emergency as well.”

RSDSA Vice President Jim Broatch is also attending the Emergency Room Physician Meeting in Boston with Dr. Alexander. They are passing out the following information to ER docs they meet at the conference.

If you have CRPS, are a medical provider or know someone with CRPS, you might want to print these and have them handy because as Lynda Avallone and Gracie Gean Bagosy can tell you, “you’ll never know when you need them.”

Now about that ketamine injection to help ER patients. Dr. Alexander says that he’ll be sharing with physicians he meets with that ketamine often works for the CRPS patient.

“The emergency room physicians are very familiar with ketamine,” he said. “They use it often when they treat pediatric patients who might have lacerations or broken bones. Educating them about the potential efficacy of ketamine on CRPS patients is something else we will be sharing this week in Boston.”

Alexander understands that one potential drawback for ER docs will be time, or the lack of it. Generally, he says a four-to-six hour injection works best with CRPS patients and ERs are trying to move their patients in and out of the emergency room in half that time.

“But doctors want their patients to get better. Our job is to share the information with them and see how they can better help their CRPS patients,” he concluded.

Editor’s Note: Do you have CRPS? What are your experiences in an emergency room? Share with us via email at editor@nationalreport.com

@NatPainReport

@edcoghlan

@RSDSA

@GracieBagosy

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Authored by: Ed Coghlan

There are 11 comments for this article
  1. marty at 9:55 pm

    I suppose in huge cities the ER ‘s are different but in smaller cities ER’s have rotation doctor’s on call which means you could have a doctor that’s specialty is no where near to your illness. And then they are called bad doctors. ER visit’s I feel are abused by many and give the rest of patients a bad rep. along with bashing decent doctors who do well in their field. Oh there has been times I have been tempted to go to the ER but know if I can make it until morning I can see my PCD who knows what is going on with me. I know you are in miserable pain. I am as well but I will not be the reason someone who is dying isn’t getting the care they need compared to my invisible illness where I just feel like I am dying.

  2. Renee Hernandez at 12:02 am

    I have been dealing with RSD for 18 years now. I’m in the midst of a really bad flare since mid-october. I have been to the ER 3 times and have been treated miserably as per usual. I am an RN who was injured on the job at a major teaching hospital here in West Virginia they found a way to fire me so I was denied workmans comp and they have treated me miserably ever since o which hospital?West Virginia University Hospital.

  3. Anita Harris at 6:04 pm

    I have been on this ‘PAIN RIDE’ for years and years. I’ve been given every pain medication known to man with little or no help. Doesn’t help that I am ‘sensitive’ to all meds. I am so tired of living this ‘Doctor Dance’. I’ve had more tests, scans, CT’s, MRI’s, scopes – even a 9-day hospitalization at Vancouver General Hospital and was diagnosed (needle biopsy) for lymphoma and given 3 chemo and 2 radiation treatments. They abruptly stopped this treatment ‘because it was not helping with the pain I was still suffering. They gave me 4 different nerve blocks in my spine – none of them relieved the pelvic/rectal pain. Two doctors said they believe my pain is neuropathic – from WHERE? I’ve paid for private services: colonoscopy, pelvic MRI, abdominal MRI and dozens and dozens of visits to my GP and several stints with Pain Clinics who love trying all the pain pills in their arsenal. Lab work and tests results have not determined a diagnosis. I paid for a private PETSCAN in Vancouver which reported ‘no cancer’. Great – but where do I go from here? Back to the gastroenterologist. He has referred me for a C.T. Colonography and I’ve opted to go to a ‘user pays’ private clinic for this test. I have 24/7 pelvic and rectal burning pain, some bleeding, painful to sit, to stand, to walk. Pelvic bones? I am now trying a cannabis / coconut oil combo as a suppository for pain. Too soon to know if this will be successful.
    Wish you all better health in 2016.

  4. Julie Brock at 6:39 pm

    Sheila, all of us are different when it comes to what w I rs and what doesn’t. Gabapentin works great for me and not for some. Lyrica caused more nerve pain for me but works great for others. That’s why it’s so hard for doctors to treat us.

  5. Mary at 2:28 am

    Sarah: Sorry to hear about your poor recovery. 10 months post op is a lot of time to be experiencing pain severe enough to cause insomnia. When physicians make a CRPS diagnosis, they look at a group of symptoms. While visiting an ER is sometimes necessary, it’s usually your primary physician who will diagnose and make necessary referrals. Early diagnosis of CRPS is beneficial to treatment. Keep a journal of your pain and any other symptom you observe. Present this to your MD. Good luck to you.

  6. Sarah at 3:33 am

    I am 10 months post patella incomplete fracture. I have been to the ER with burning and stabbing pains in the leg I injured but nothing shows up on xray or ultrasound. I often wake up with severe pain and thigh cramps. Is this crps??

  7. Sheila at 5:55 am

    Just a note that CRPS is extremely and notoriously difficult to treat. Ketamine, gabapentin, lidocaine, amitriptyline and other drugs commonly used to treat CRPS often don’t help at all. My teenage daughter has been living with CRPS for 8 years and has tried everything. Nothing helps much at all. Baclofen gives her a bit of relief, but really, she just lives with pain. ERs should be aware of that fact: that a CRPS sufferer is already dealing with an enormous amount of stress and pain in addition to whatever crisis brought them to ER. CRPS is very real.

  8. Beverly at 11:08 pm

    Valerie: Have you tried Gabapentin? It works for me. I was put on a gradual dose until I got up to the dosage that does the trick, most of the time. I still feel burning some days, but it’s nothing compared to what it was. Good luck.

  9. Beverly at 11:03 pm

    If you have CRPS and have had it for 3 months or less, there is a chance that the pain can be greatly reduced by seeing a Pain Management Specialist who is experienced in treating CRPS patients. The PM can give you a nerve block to lessen quite a bit of the pain, if he/she thinks it’s appropriate in your case. After that, he/she can get you gradually on a dosage of pain meds that will help with any pain left over. That’s what happened to me. I had hip replacement surgery and I experienced that horrible pain we all go through and couldn’t figure out what it could be. I thought it was the nerves waking up. It was about 4 weeks after the surgery that I saw the PM that my surgeon sent me to. I thank God for him. After the procedure was done I was almost pain free! A miracle! The PM put me on Gabapentin and my life has gone on. To everyone who has this horrible condition, please, if you haven’t already, see a Pain Management Specialist who knows about CRPS. Of course, you and the PM have to talk and see if the nerve block would work in your specific case before you make this decision.

  10. Valerie at 2:08 pm

    I wish the doctors that are familiar with CRPS would talk to the Kaiser people so they will implement ketamine. I’ve heard great things but Kaiser doesn’t allow it. Please help. Thank you