chronic illness · chronic pain · crps · lyme

10 tips for what to do when you have chronic pain and you have to go to the ER

ervisit

I recently had to help guide a good friend (hang in there girl <3) through an ER visit for a BIG NASTY CRPS flare up and thought it might be helpful to share what has helped me with my own ER visits for my severe chronic pain from CRPS and Late Stage Lyme Disease.

I have been very lucky and have never been denied pain intervention at the ER.

Unfortunately I have had several friends with chronic illnesses who have not had the same experience. Several people who I know with chronic illness have had go to the ER seeking help and those friends have been treated poorly or had the validity of their pain and illness questioned.

This is really unacceptable but unfortunately a reality that many with chronic pain face every time they step foot in a ER.

These are simple tips that I have found to help assure the ER that you are not drug seeking and will allow you to advocate for yourself.

I cannot promise you will be treated the way you deserve but these tips certainly may help!

1. Before you go call your regular pain dr and any other dr who manages your care.

They NEED to know you are going to the ER. If you are under a pain management dr’s care your contract with them may state that you have to have their “ok” to get pain medication from another dr. ALWAYS play by your pain dr’s rules, it may bite you in the butt later on. I have also found that when your dr is aware that you are going to the ER and then the ER calls your dr discuss your case, it works in your favor. It especially helps if your dr has instructed you to go to the ER. You want to show a clear chain of events of what you have already tried to calm down your flare up and that you are at the ER as a last resort. If your dr has ordered you to go to the ER it shows that they too are concerned. You also want to “prove” that you have actual medical conditions.

 

2. Use the words “pain intervention”.

I have found that when you use that specific phrase you are showing that you are there for help, not just rolling up and demanding pain meds. For some patients, relief from their pain may also include getting fluids or getting a shot of Toradol for inflammation. You want to show the ER that you are willing to take whatever help they can give you and you are there for help for your pain, not just for drugs (although YES you may need IV pain meds to help calm your nervous system down).

 

3. Have a list of your meds on your phone.

I regularly update mine whenever things change. You can give this to the nurse at the beginning so they can write down all meds. I also feel like it shows that you are in charge of your health. It’s easy to forget when you are on a lot of meds and it will make the nurse’s job easier as she/he types it all in to your chart. There’s also many apps that can help you keep track of all your medications.

 

4. Have whoever brought you to the ER come into the room with you.

Sometimes when we are in A LOT of pain, its hard to coherent. I find it’s also helpful to have someone back you up when you are explaining your health history. It also never hurts to have someone hold your hand, tell you they love you, and that its going to be OK.

 

5. If you don’t have someone there (I have been in this position as well) try to stay as calm as you can

ER nurses and drs respond better to those who are not hysterically crying and flipping out. This doesn’t mean don’t cry and this also doesn’t mean you can’t show the ER staff you are in pain. You do however need to be able to articulate what is going on so the doctors and nurses can help you. If you are there alone, take deep breaths in and out so you can tell them what’s going on. Focus on one part of the room and instead of your body. ER doctors and nurses see people in all kinds of pain and terrible situations and yes, many are wary of those whose pain is “invisible” because of those who may be drug seeking. Hysterics can sometimes be viewed as being overly dramatic. Those who are “making a scene” can often be treated poorly…it’s unfair but also something that happens.

 

6. If you have issues with IVs let them know.

For those who have CRPS, this ER protocol for CRPS is a great thing to have on your phone. It clearly explains that we need to be treated differently with IVs and also covers things like no ice on any place that is affected by CRPS. If you have a condition that requires similar “special” care, be sure to bring some info on that be it on paper or on your phone in the form of a website or a .pdf.

 

7. Be clear in what you have already tried for your pain.

I have found that when I tell the nurse and dr what I have already tried both medication-wise and other things like warm baths, heating pads, meditation etc that they can understand that I am at the ER as a last resort. Drs are less likely to help you if it appears that you have rushed to the ER at the beginning of a flare up. The ER is truly a place of last resort so it will help you to articulate what you have already tried at home to try and get your symptoms under control.

 

8. Be kind.

When you are in a lot of pain, its easy to snap at people. You are scared and hurting. I have sat in my wheelchair at the ER and watched those who are walking be seen before me. I do however know that the ER has “their” system of who gets seen first and it isn’t for me to judge what someone else may be suffering with. It is VERY frustrating to be in terrible pain and have to wait for a long time to get relief. I have waited for 7 hours at the ER and sobbed on and off for those 7 hours until I was seen. I wanted to be mean and nasty because I was in so much pain and waiting that long in my wheelchair made it worse. I didn’t thought because I knew it wouldn’t help anything. The people at the ER are still human and they have feelings. They work long shifts and deal with a lot of gross and crappy situations. Saying thank you and being respectful goes a long way.

 

9. Educate them. 

Some conditions are rare and you may need to have info on your illness on your phone so the nurses and dr can understand what’s going on. I understand this is frustrating but it will work in your favor when you can show them a written description of what your illness is if the ER staff is unsure of your particular condition. It may be helpful to save a webpage that explains it on your phone for ER trips.

10. Follow up with your regular dr.

When you are discharged, you need to call your dr and let them know what happened and if possible, get in for an appointment ASAP. If you are in that bad of a flare up, something may be wrong. You may need to tweak your protocol or you may need to look into additional issues that are compromising your body to create this flare up of pain.

 

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These are things that have helped me when I end up going to the ER.

I have always been given medications to help me and never treated as someone who is lying to get drugs. Some of this may because of my particular medical situation but I do believe that I have also gotten help because of the way I do things when I go to the ER and how I show clearly that I have covered all my bases and am there for pain intervention

It is terrible and scary to be in so much pain.

The good news is that in my own experience this pain DOES end.

I deal with monthly migraines, the nerve pain with my CRPS, joint pain and muscular pain and I have found that ALL of it ebbs and it flows. It doesn’t always end when we want it to but pain works in ways that don’t make sense. It spikes up out of nowhere and makes you terrible miserable for far longer than anyone should have to suffer but in my almost 5 years of dealing with chronic pain, I also have found that it doesn’t stay at insane crazy level 15 forever.

It’s hard to remember that when the pain is raging and its often hard to just stay calm and rational.

My heart goes out to anyone in that kind of pain. It’s an experience I have had more times than I would like. I hope these tips help you get the help you need and deserve.

Hang in there, you courageous soul. The life of someone with chronic pain isn’t easy. You are brave and you deserve relief.

xogen

8 thoughts on “10 tips for what to do when you have chronic pain and you have to go to the ER

  1. Thank you for being a true life line. This is much needed in our community. It is terrifying to get to the point of last resort of an ER.

  2. Hi Pippit,
    I am so sorry that you have had such terrible experiences at the ER. I have sadly had other friends have equally upsetting experiences. I apologize if you took the tone of my post to seem like I am excusing bad behavior from dr and nurses. That definitely happens, it has happened to me just not at the ER. I just think when you are in A LOT of pain its hard to think about what to do and I have had friends come to me asking whats the best way to approach the ER since I have historically had great care taken of me in the past few years since I have been sick. That was the inspiration behind the post.

    Unfortunately I definitely think no matter what a patient may do or what their expectations are of the care they need to receive, you are always going to run the risk of running into a jerk dr or nurse. It isn’t fair and it shouldn’t happen. It’s pretty inconceivable that people with terrible bed side manner or a bias against certain patients even EXIST in our medical system. Maybe I need to reword a few sentences in my post to cover that issue.

    I guess the main point behind what I have written is that a) you have to advocate for yourself and b) you have to address that drs and nurses are very aware of those who are drug seeking and what might work in your favor to assure them that you aren’t there for JUST drugs.

    Again I am so sorry that your experiences have been so crappy. I hope this comment finds you on a low pain day!

  3. This is great advice, Genevieve! It is such a struggle sometimes. We have to advocate for ourselves, yet heading to the ER usually means we are at our worst. And that means we are exhausted on all accounts (emotionally, physically, mentally). My husband has taken me to every ER visit over the last few years and I KNOW it’s been a huge help. Educating on my illness has also been a must, like you suggested. Even if they aren’t interested in hearing it, we share it. Thank you for sharing such helpful information! Sharing on my FB page. <3

  4. OMG I wish I had read this before going to the ER two days ago! I’ve been to the ER at least 20 times at this point, and on every occasion except two I was denied pain intervention. Thank you so much!

  5. Do you mind if I share this with some of my online communities? It’s so comprehensive yet easy to read. A great checklist!

  6. Hello Genevieve,

    You are amazing when dealing with all your conditions especially the CRPS. I have CRPS about three years now. My last visit to the ER was extremely horrible and I came out of there with more pain thanks to Dr.JERK. it did not matter what I explained to him or how nice I was with him. His reaction was oh, you ran out exof meds and you come here. I explained to him I did not want meds because I have them and that I have a contract with my pain management but that I could no longer deal with the excruciating sciatica pain and only wanted an injection to relieve the pain until I was seen by my pain management doctor.

    I have crps on both my right foot and on my entire left leg (thanks to the spine stimulator). He grabbed my foot so hard and passed a pen under my foot so hard I wanted to kick him. I will no longer go to the ER rather die of pain.

    Since the beginning of my crps I have had nothing but asinine doctors even when I have shown them what it is they think themselves God.

    I’m sorry to say I no longer believe in doctors. This crps has turned my life upside down, give up my job, sometimes my family doesn’t understand and other times I just want to give up.

    Yes is a boat with no sails…

    Again your unique….

    Yvonne

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