Life in Pain: Another Trip to the ER

Life in Pain: Another Trip to the ER

Most of my life I’ve been in and out of emergency rooms. Migraines, broken bones, and infections have landed me there more times than I’d like to admit. Not to mention that my former job was to take people by ambulance to the same hospital that I now frequent.

Unfortunately, something changed when I was diagnosed with Complex Regional Pain Syndrome (CRPS). I went from being the girl that everyone recognized from working at the ambulance company, to being perceived as a drug addict with a made up pain condition.

No one at the emergency room of my hospital has ever heard of CRPS. They don’t recognize the agonizing pain that plagues my life. Doctors are baffled by me, and usually decide that I’m lying and trying to score pain medications. They don’t understand how I can smile and joke around and still be in the amount of pain I claim to be. They don’t see how much work it takes to keep a smile on my face.

Ignorance and lack of compassion plague many doctors nowadays.

People with chronic pain are considered outcasts of society.  They’re looked down on, and judged by people who have no idea what it’s like to live with chronic pain. All the public has ever heard about are the amounts of painkillers pain patients are on, leading them to believe that the person is an addict. Unfortunately, these misconceptions and stigmas can prevent patients from receiving humane treatment.

1024px-FEMA_-_18140_-_Photograph_by_Jocelyn_Augustino_taken_on_10-29-2005_in_FloridaSince my diagnosis, I’ve been a patient at the emergency room at least 15 times. That’s almost once a month, with my latest trip being three days ago. During my time there, I have been called a liar, suspected of being a “pill seeker” and been refused treatment.

I am believed to be a drug addict because my pain is so high; it takes a large dose of medication to take just the edge off. Many doctors and nurses don’t understand that I’ve been taking narcotics for over two years and have developed a tolerance. Right now, I take 30 mg of morphine daily, which is just barely enough that I can make it to and from the bathroom 10 feet from my bed. Occasionally, it will even allow me to sleep for more than an hour or two at night and not be doubled over in pain.

Doctors get agitated because the only thing they can do to help me is give me more pain medications. They don’t know what else to do. That is the only thing they have in their repertoire to deal with pain, which is to treat the symptoms.

This does not work with CRPS. It is a Band-Aid over a giant knife wound. It may hide part of it, but in no way is the Band-Aid a fix.  Even outside of emergency medicine, few doctors even know where to begin to address the causes of chronic pain, instead of only treating its effects.

Finally, after 18 months, I have taken my treatment into my own hands.

Now, I never go to the emergency room empty handed. I always bring a piece of paper for every step of the process. I bring personal and insurance information for admitting, and a medical history and baseline for triage. There is also a list of medications and a description of CRPS for my nurse.

What I bring for my doctor is slightly different. I not only bring a breakdown and information pamphlet about my condition, but also the hospital’s protocol and guidelines for treating CRPS. Once I present the doctor with this information, the quality of care improves dramatically. I’m treated as a human again. They’re gentle and conscientious of where my IV’s are placed, and the temperature of the blankets. They don’t purposely bump my legs just to see how I will react anymore. Most importantly though, they don’t sit and tell my husband and mother that I’m faking my pain or coming down from a high.

What they have told my family is unfathomable. I’m not, nor have I ever been a drug addict.  Yet, here are doctors telling my family that I’m having seizures because I’m coming down from my addiction to pain medication. It’s not right. Quality of care needs to change.

You would think, by how I’m treated, that no one has ever had CRPS. That’s simply not the case. I’ve heard estimates of between 1.5 and 6 million cases of CRPS in the U.S. alone, with 50,000 new cases a year.

Chronic pain patients deserve respect. It’s apparent that we cannot count on the doctor’s to know and understand what’s happening with us in regards to our conditions. Our responsibility is to ensure that we receive the best care possible.

Sometimes that might involve stepping on toes, but it will be worth it in the end. It might make the following trips easier on yourself or someone else.

Amanda SiebeAmanda Siebe lives in Portland, Oregon with her husband and son. She writes about her daily battle with chronic pain and CRPS in her blog “Life in Pain.”

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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There are 10 comments for this article
  1. Anonymous at 1:32 pm

    I have a mug shot on my fridge of one of the Doctors that alleged that I was a druggie, or mentally ill because I went to the ER with a ruptured disc! This and other spinal issues went misdiagnosed for years, until I am now permanently disabled. I have constant Chronic pain , so the mug shot gives me a little laugh!

  2. Amanda Siebe at 2:05 pm

    Hello Everyone!!

    Thank you for reading my articles!

    @Dr. Mark W. Helfand: I use to be an EMT on an ambulance and we used Fentanyl, so I am very familiar with it. I have a lot of friends that the Fentanyl patches have worked for. Unfortunately, I do not have a doctor that will prescribe them for me to see if they will work for me. I wish that they would because I am kind of at the end of my rope.

    @ Anne: I have been doing acupuncture and Chinese herb tea. The acupuncture is hit and miss on whether it helps. I also have very slow healing now, as a result of my condition, so the needles hurt, scab, and bruise more than they should. I am also a medical marijuana card holder as of yesterday. I am hoping that it will help with pain and sleep. I have also been on Toradol and Meloxicam. The Meloxicam helps a bunch with my swelling, which helps my pain. The Toradol did not do much though for pain. When I go into the ER now, I get Diludad. I am going to try and see if they can give me Ketamine the next time that I am in there or Fentanyl. I will let you know if it helps a bit.

    @Bonnie Tucker: http://www.rsds.org has a lot of great information for doctors and Emergency workers. Check out their “Medical” section.

    @john chivalier: I am glad you found a great, friendly doctor. That is the key to successfully moving forward. Having a doctor that you are stressed about seeing is counter productive. I am hoping to find an amazing friendly doctor, too.

    @Amber Rose Dullea: If you have the Oregon Pain Society’s contact information, or someone that you know on the board, I would love to speak with them. I would love it if you could share the information with me.

    @JohnMichael Molinares: I would love to read your paper. Please feel free to send it to the contact address on the National Pain Report and they will forward it to me. Glad you finally got a diagnosis and some good sleep. I miss sleep.

    @Colleen Sullivan: Thank you for letting me know about Patients United for DEA reform. I am excited to do some research into the group and read your story. I know what you mean about kindness being gone. Hopefully, working together, we can bring it back, along with understanding and compassion.

    @Kristine Byrd: Hopefully, we will be able to find an end to this problem. Doctors are so calloused now a day to pain patients. That all needs to change.

    To everyone reading this:
    I am working on putting together a letter writing campaign. I am asking that letters be sent to my personal address and my goal is to hand deliver them to EVERY senator and member of the house. For more information and a sample letter, please check out my blog!! http://lifeinpaincrps.blogspot.com/

    Together we can make a difference. Together we can change the way doctors treat Chronic Pain Patients!!

  3. Dr. Mark W. Helfand at 11:59 pm

    Hi Amanda,
    It’s terrible that the Emergency Room docs put you through hell. I’ve had CRPS for 14 years and have been treated the same way. My cousin, who is a doctor, told my family that I was faking because I didn’t want to work and was a drug addict & alcoholic. I carry copies of my prescriptions with me to show the ER doctors the doses of pain meds I am taking. At one point I was taking 900mg of Morphine every 4 hours. I am now using a pain Med called Fentanyl. It is 100 times stronger than morphine and is working fairly well. The drawback is that it’s used for cancer pain so insurance won’t pay for it. It is very expensive. It comes in various forms; lollypops, pills that dissolve quickly in your mouth, patches that stick to your skin & they have recently come out with oral sprays. It’s a tough battle that you’re fighting and you’re doing remarkably well. I’ve learned over the years to just tell people what they want to hear & go on doing what I know is right for me. Find a doctor that knows CRPS and listens to you. That is most important and most difficult. Good luck with your battle. My thoughts and prayers are with you.
    Dr. Mark W. Helfand

  4. ann at 6:25 pm

    Hi Amanda, what has been your experience w/ aqua therapy, or anything alternative, have you tried many alternative techniques?
    The other thing that helped me tremendously during my last hospital stay which was the first of two total hospital stays since I’ve had CRPS w/in 2 weeks of each other. They tried something called Toradahl (sp?) But, legally, you can only be given two – three doses & you can only have it in shot forms. It worked better than morphine for me, which didn’t work really at all. And I have a very low tolerance for drugs. It doesn’t require a lot for me to feel the relief if it’s going to work. Anyway, when I told my pain Dr the name of the med Toradal & how it worke, he prescribed something that he said would work just like it, it’s called meloxicam. Not sure if you’ve already tried this, however, it works well for me, if not as good as the shots of Toradal that I had in the hospital, but, almost as good. You don’t feel drugged or anything, which is important to me. I hate not having control over my cognitive process.

  5. Bonnie Tucker at 4:00 pm

    Where do you get pamphlets about CRPS from ?

    Thanks

  6. john chivalier at 3:41 pm

    I have been on lortabs for 7 yrs, plus alot more drugs with it. This one hospital where I live always treat people like crap, a nobody and a junkie. My so-called pain dr his bedside manner was also terrible. I no longer go there my primary has taken over treatment once he found out how I was being treated. My primary is through the VA and his name is Dr. Strickland, he is one of the kindness person you will ever meet. I think God for him not judging me, he just gives good quality medical treatment.

  7. Amber Rose Dullea at 12:42 pm

    I am amazed by your fortitude and your for site to get everything together to educate your “care givers”. On a positive note, I just went to the Oregon Pain Society dinner last night. It is a group of healthcare professionals who are actively learning to appreciate a multidiscipline approach. These professionals were compassionate and eager to make a difference.
    This is right here in Portland! I believe there is hope and it takes finding those practitioners who really care and who will believe you.
    Good luck on your continued journey.

  8. JohnMichael Molinares at 12:11 pm

    Wow I can so relate; I was improperly diagnosed in 04′ just to find out it was CRPS. Since then I’ve gone through so many dr who pass the puck” I finally waited for an ERdoc who helped diagnose me in 04′ too open up his own practice. I’ve tried everything from SCS to now a intrathecal pain pump. Days go by so slow when I’m in pain. The other days I seem too scwallow by. Though I have this pump in me I still require large amounts of pain meds orally”. I still get called the ugly names and looked upon as an addict, yer as soon as they see my arm and hand swelling and turning three shads of green/blue they tend to sometimes help. My doc is cool in the since that he understands, but still questions my pain(yet he was the one who fought for my pump). I go too sleep at night when I can and ever time I close my eyes I just want someone to understand. Ill send u a copy of my recent tragedy. Just remember the paper is bias and not all the facts are there”

  9. Colleen Sullivan at 11:30 am

    Hey Amanda. I totally understand what you are going through. I have a story much like yours on my site dedicated to just this problem, Patients United for DEA reform. Please read my story https://www.facebook.com/notes/patients-united-for-dea-reform/colleens-story-my-horrible-day-dealing-with-pharmacies/346088912163311

    I do not have CRPS like you, but I do have something similiar. You might remember, my story was featured on this website last week. I have Mixed Connective Tissue Disease which is VERY rare. I also have lots and lots of pain everyday. I see you say you are on a high dose at 30mg of Morphine a day. I wish I could still take that much and have it work! I have been on pain meds for 12 years now (I am only 29) and I am up to 90+ MGs of Morphine and also Diludad for breakthrough. I am just so sick of people treating me like a druggie because of my age. It makes me sick. Literally, all this stress over my meds every month makes my condition worse. I hope together we can help make a difference.
    I just can’t take it anymore. All the worrying…will I get my medicine this month? All the sadness…will I have to live in pain forever? and all the confusion….is she really sick or faking? I just can’t take it. What happened to kindness??

  10. Kristine Byrd at 9:22 am

    I totally understand! It’s ridiculous how we as chronic pain sufferers get treated by ER doctors! I fell down the steps not too long ago and the emergency doctor asked me if anyone saw me fall. Then he said walk across the room, and I did and he said you’re fine and that was it. I was pi**ed! I have arthritis, scoliosis, degenerative disease, fibro myalgia, and numerous other things, including recently having my girl parts removed due to cancer! Only person that doesn’t look down on me is my own doctor!