Tag Archive | Chronic Pain Awareness

Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain.

What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)

A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.

A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.

Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does, even when the need for treatment is real and immediate.

Your regular healthcare team, especially your Primary Care Physician, is by far your best bet for getting help managing a chronic condition that is spiking out of control, but sometimes the ER is the only option. When that happens, here are some tips to help make your experience more manageable:

  1. Make sure that you have a regular physician who treats your chronic pain. That’s a relationship that all chronic pain patients should establish before they ever set foot in an emergency room. Without this all-important steady doctor-patient relationship, the rest of this list is not really possible. In terms of seeking out aid in the Emergency Room for a spike or flare of pain having to do with an ongoing condition or problem, even having a bad doctor is better than no doctor at all. If you are having trouble finding a primary care physician who actually does care, the best place to start looking are local and even national support groups for your condition(s). They will have lists of hospitals and even specific doctors in your area who have been a good match for others in your situation. If those doctors are not taking patients, don’t be afraid to ask their staff where they would recommend going or if that doctor can make some recommendations of physicians they know to be effective at treating your condition. This search can take a while, but always keep a PCP on file, if you at all can. Not having a primary person who writes your prescriptions and handles your referrals makes the staff in an Emergency Room nervous no matter what.
  2. Show that you have tried to contact your regular doctor before you go to the ER. If you have been in pain for five days and have not alerted your doctor, the ER staff will question how bad your pain really is. Even if the pain struck out of the blue that day, make an effort to contact your regular doctor first. ER staff will be more sympathetic to patients who have called their doctors and been told to go to the emergency room because the doctor was unable to see them. At least you’re showing you made an effort and only using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication. This is important, as unfair as it is, they will not give you proper care if you are using the ER too liberally. Having your physician back up your story is never a bad thing, it helps establish legitimacy and urgency, and can help push you through to getting treatment sooner rather than making your wait for four hours “just to make sure you’re really in pain” before giving you any medication or imaging.
  3. Bring a letter from your doctor. A letter from your physician, with a diagnosis and current treatment regimen, is a logical, completely reasonable thing to carry with you, particularly if you’re on a regular dose of opiates in today’s atmosphere of distrust and disbelief of pain patients. Always make sure the letter has your doctor’s name and phone number. That way, if ER doctors want to contact your physicians, they can. This is especially useful if you’re traveling or going to a hospital that you have never visited before.
  4. Bring a list of medications. Bring a list of your medications, instead of relying on memory. Usually the hospital will already have access to the list of everything that you have taken for the past several years, so don’t try to lie about it, you will only hurt yourself in the long run. Always be honest about medications you have taken or have been prescribed.
  5. Work cooperatively with emergency room staff. It might not be fair, but if a patient comes in screaming and shouting that they need pain medication right away, the staff isn’t going to like it. Being loud and distressed will call negative attention to your actions and makes hospital staff that much less sympathetic. You might be in agonizing pain, but the staff is going to be more concerned with “drug seeking behavior” than your well-being. So rather than demand things, try to work cooperatively with the staff, even if they’re not being cooperative with you.
  6. If you have an alert card or pamphlet explaining your condition, hand it to them and ask for it to be put in your file. For instance, I keep a card in my wallet explaining that I have Ehlers-Danlos Syndrome and detailing the worst parts of the illness and information that is pertinent to an emergency. I also listed my most severe medical allergies around the border of the card in big black block letters. It’s important for the staff to know what is going to cause more pain & what may help.  If you have a rare condition or one that is frequently misunderstood or which is conventionally thought to not cause pain, bring a relevant pamphlet from an awareness or advocacy group with you. Consider buying one of the brand new USB alert bracelets, pendants, or wallet cards. These plug into a computer in an emergency if you can’t speak for yourself, and they can be uploaded with as detailed medical information as you want, from medical history and current doctors with phone number and addresses to info like allergies, current medications, current medical concerns, and alternative treatments/supplements as well. Most manufacturers understand that a computer might not be nearby in an emergency and have a phone number printed on the back of the bracelet that you can call to access the information as well.
  7. Ask for a nurse advocate or make sure someone is with you. This will help you when trying to explain things to the staff. It helps to have another person there to advocate for you.
  8. If at all possible, use the same Emergency Department as the last one you went to, your pain will be that much more believable if you always use the same place. Plus, you might actually get doctors to take an interest in your chronic pain condition and maybe even other conditions that can cause a chronic illness patient to end up in the ER. Think about the ramifications that could have down the road for future patients!
  9. Finally, since there are a lot of easy-to-forget details in this list, especially in the fog/panic/blacking out that happen whilst in horrific pain, I like to keep a folder handy with all those details written down, as well as a copy of most everything I need to bring with me. It isn’t always updated with the newest things I’m taking, so I bring the bottles themselves if I am on anything different since the last list was written. Being organized shows the ER team that not only do you take your condition(s) seriously, but that you have done all you possibly can to avoid the Emergency Room and to only use it as a very last resort.

About two years ago I was turned away from an ER without treatment by an extremely ignorant physician (after toughing it out all night crying and screaming at home), I had to contact and be seen by my pain doctor the next morning and then was sent right back to the same ER, only this time I was told to have them call my pain clinic when I got checked in. I did not want to go back there, but things went a lot smoother the second time, despite my apprehension. I was given the correct sedatives for once, and no one yelled at me or gave me super judgmental looks. I was treated for pain, monitored, and released without being asked to pee in a cup or otherwise treated like an addict. It was the only decent Emergency Room experience I have ever had, other than being in constant, black-out, vomiting, excruciating, unrelenting pain for almost 48 hours prior to finally receiving treatment and not sleeping a single hour of that time, all from an Occipital Nerve Block injection that was supposed to be a diagnostic tool, gone horribly wrong. (Hint: If your gut says “Do not do this, it isn’t safe” then listen to your gut, or it probably isn’t going to turn out well. I knew in my soul that the injection wasn’t going to be a good thing for me, and I don’t even have a minor fear of needles.)

I haven’t been back to the ER since, I have to admit I have stayed at home through even worse pain than that episode since then. No part of my soul trusts the Emergency Room to treat me, as a 26 year old fibromyalgia and chronic fatigue syndrome patient with occipital and trigeminal neuralgia, Spina Bifida Occulta, Joint Hypermobility Syndrome / Ehlers-Danlos Syndrome, with damaged vertebral discs at the top and bottom of my spine and everywhere in between, just to name a few of my chronic pain conditions. None of that matters because what they see is a 26 year old who usually hasn’t showered in days, is twitchy and fidgety (pain makes me move nonstop sometimes), sweating profusely (a fibro symptom having to do with autonomic nervous system dysfunction or dysautonomia), has a hard time walking in a straight line, and usually I am extremely angry or panicky, one or the other. There isn’t a lot of sympathy for me if I don’t do absolutely everything right when I go to the ER.


It’s certainly not fair or acceptable, but the Emergency Room just is not cut out for dealing with us; the tough cases, the ones who can’t be “fixed” or “stabilized” because in hospital staff eyes, we are already stabilized and not in any immediate danger. Yet pain is dangerous. Chronic pain over a life time is more damaging to the actual structures of the brain than taking hardcore opiates every single day for the rest of your life. That isn’t to say that there isn’t some middle ground to be found here. I do not advise hardcore opiates for chronic pain on a daily basis, especially at my young age, because if I take heavy opiates now, years down the road when I need surgery or dose titration, eventually there isn’t anything else to elevate to by the time I’m in my late 30’s. That’s not how I want to end up. The only painkillers I currently take are tramadol and medical marijuana for breakthrough pain and seizure activity.
I have learned to make do, but it took years to figure out just how little I can do off of painkillers without my condition deteriorating. I’m still trying to adjust, trying to find the sweet spot between too much and not enough, and knowing that life with a chronic illness will always be a delicate balancing act.
I’m not just saying that heavy opiates are a bad idea, I actually used to take anywhere from two to ten 5mg oxycodone every day while I was working, and while it did not take the pain away, it made me more able to do things, more willing to put myself through pain over and over again all day long. I could still drive at that time, purely thanks to opioid medications, but I don’t think it was healthy to push so hard that I had to pop pain pills like mints, just to stay upright and not cry through my whole shift. At one point I was even on morphine every night to sleep just a couple of hours. Clinics were offering me methadone, which I vehemently turned down.
I had a rough, rough few months when my first visit with a brand new doctor ended with him taking me off oxy and morphine all of a sudden in the middle of a flare, no weaning, just completely off of opiates (and chronic fatigue/ADHD medication at the same time too) cold turkey without even the slightest heads up. I wasn’t even given tramadol by that asshole. I had to call crying in pain four times in one week before he would even write a tiny prescription for 12 (yes, one freaking dozen) during a two month long flare up! So humiliating. He also told me not to go to the ER no matter how much pain I was in. What a complete idiot. His favorite phrase was “at least you’re not in a wheelchair”. I could barely contain my hatred every time he said that or my other personal favorite: “you are a perfectly healthy young woman”. Not my weight, my blood pressure, my mental health, or my chronic pain conditions were healthy about me, so I was partly just shocked he couldn’t think of any reasons I wasn’t healthy.
Yes, middle ground. I understand that “as-needed” for a chronic pain patient can mean literally anything, from almost never to pretty much always. So I say with caution and leaning more toward the almost never side of things, “as needed” pain medication can save your life. When you need it, and you really need it, you know best, and you deserve to be treated correctly, efficiently, and even compassionately by ER staff. The above suggestions should help cut down on the emotional trauma that people with chronic pain often associate with going to the Emergency Room. In our greatest time of need, it would be nice to actually be able to count on getting help when we seek out this last resort in our coping toolbox.

Hilarious Retorts For Doctors Who Think Fibromyalgia is a Joke, From an Actual MD

As a companion piece to my post about dealing with doctors in the context of a chronic illness, and because I so enjoyed A Body of Hope‘s humorous but realistic take on her experiences with doctors in Warm Milk: Physician Frustration, it seemed like some similar lighter fare was appropriate.

Here is a hilarious rant by Kevin White, MD, with the perfect rebuttal to the many doctors who think that fibro patients are faking it. It’s nice to see someone in a position to make changes so animated about advocacy for the chronically ill. It’s also nice to hear that my occasional feeling of homicidal rage are justified. 😀

Especially, it is awesome that there are doctors out there willing to defend us so bluntly and honestly. Thank you, sir!

The more I look, the more I find doctors giving us good advice. Wish I could find more in real life, but it’s certainly nice to know they’re out there!

Waiting Games

I hate waiting! Waiting is the worst. I know that everyone hates to wait, we all want instant gratification, but being sick has taught me that patience is a virtue in so many ways (not to mention, it’s really my only option!). Before chronic illness my longest wait might have been for my paycheck to clear the bank, maybe waiting for the line to die down at the garden center I worked at, or waiting to get my coffee at my favorite coffee shack. I had to be patient for some things, but my life certainly didn’t revolve around the process of not being able to get what I want and need in a convenient or expedient amount of time.

Waiting for doctor’s appointments, waiting for pills to kick in, waiting for the pain to recede for a second, waiting for test results, waiting in line at the pharmacy, waiting for my heating pad to get warm, waiting for providers to call me back, waiting for a good day, waiting for my insurance to authorize my procedures, treatments, tests, and medications, waiting for the hospital staff to answer my emails, waiting for the weather to not hurt me so much, waiting for my boyfriend to get home from school, waiting for the fatigue to lift, waiting for it to be the right time to talk about the important things that need to be talked about, waiting for the doctor to come into the room, waiting to fall asleep, waiting on hold with my clinic, waiting for the withdrawal effects to stop, waiting to be checked in at the hospital, waiting to schedule appointments, waiting through painful nausea and dry heaving in the morning, waiting out the times when I just want to go the Emergency Room, waiting out the judgmental comments, stares and snickering of nurses in the doctor’s office, waiting out my rage at the idiots who think I have it so easy because I don’t have a “job”, waiting for Karma to decide she’s done testing me.

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I have gotten so good at waiting now that it is half my waking life. Not that it doesn’t bother me, nothing is worse than waiting a week for a prescription you really need. How would anyone be able to get anything done while they were stuck waiting all the time, and not even for things that are exciting or good? There is a lot of extra waiting for those of us who are chronically ill, and I believe that’s part of the reason why spoonie time is so very different from healthy people time. What takes me a whole week might take someone else an hour. And in turn, what I accomplish in one hour can make me useless for a whole week.

I do not think healthy people realize how much energy it takes to be patient, to hurry up and wait, to stay quiet when you want to scream. It is so draining, so life-suckingly, mind-numbingly boring that your brain seems to be melting. The awful background music plays over and over again in your head, even when you aren’t on the phone. It takes all your spoons to keep sane while you sit there, just passing time, in pain, exhausted, and in limbo because once again you don’t know the results of your latest CT scan, you haven’t heard back from the insurance company as to if they approved or denied your claim, plus your are currently waiting to have the energy you will need in order to wait some more later on. It’s difficult to be fully engaged when life requires that you be so finely skilled at patience, and patience seems to require that you embrace the part of you that is more apathetic than worried, at least for now.

Chronic Pain Awareness Month

Chronic Pain Awareness Month

September is Chronic Pain Awareness Month

I hear it echoed over and over again by my friends, my self, and chronic illness writers across the web. The hardest part is getting those around you to understand what chronic pain takes away, not only from your physical capabilities, but cognitive abilities, focus, social functions and so many other things, too many to list. What the general public and even caretakers and close friends may not know is that chronic pain changes everything, from taking a shower to driving to thinking clearly in a meeting to not cutting a major artery in a surgery. Some days, I feel lucky to have done the dishes even if I did nothing else that day. Sometimes just surviving is overwhelming. If I can do nothing else, on my days when I am resigned to a chair or the couch, I want to help spread the word about the real bravery of the men and women who wake up each and every morning in unending, unforgiving pain. In addition, I desire so much to ease the transition for newly diagnosed patients with chronic illness through education, advocacy, and compassion. As a community of chronic pain patients one of the most pressing issues is to get a realistic, non-romanticized version out to the public of what it is like to be ill and not be able to rely on your body, or even you brain, depending on the day.

I am the same person I was before my illnesses took hold, but I am also different. I speak differently, and I speak about different things. I spend most of my day distracted by pain, and looking for a distraction from it. I am sure that the people around me no longer believe all the crazy things that are happening within my body can possibly be happening to one person, all in one month, and that is part of the stigma of chronic illness. I too didn’t understand what it meant to look fine on the outside but deal with so many problems within your body that even basic work was impossible. Five years ago, I would have pointed at someone like me and said “oh, she’s exaggerating, it can’t really be that much worse than my _____ (insert: back pain, flu, headaches, anxiety, arthritis, whiplash injury) and I worked though all of those things” but I was wrong. I was so terribly wrong that I guess life had to prove it to me in a pretty brutal way. How does that saying go? Judge not, less ye be judged?

I figured, especially because I was one of the judgmental voices, the harsh and unforgiving “them” who could never understand chronic illness, and now I understand all too well, maybe I should be one of the ones who helps shed some light on the many unseen and unspoken hurdles facing patients with a myriad of rare, invisible, incurable, and terminal illnesses. I’m honestly guilty of still trying to hold myself to standards that I cannot achieve with my illness in full force like it currently is. Hopefully in the midst of promoting acceptance and support from caregivers, relatives, friends, significant others, healthcare professionals, and the media, I can also sway some fellow spoonies to take it a little easier on themselves too. If you are dealing with daily pain that will not relent, try to gently remind yourself that you won’t gain any ground by ignoring your symptoms.

The road to being okay with your new life as someone living with chronic pain is paved with research, acceptance and acknowledgment of your symptoms. For those of you who are not in chronic pain, likewise, researching your loved one’s disease, then verbally showing acceptance and acknowledgment is the best gift you can give someone who is suffering. It is amazing what hearing the words “I believe you” can do for the soul. It is like being wrapped in a big soft blanket and having a hot cup of cocoa placed in your hands on a cold day.

Never forget that you own the right to tell your story as raw and honest as you feel comfortable with. You aren’t just doing yourself a favor by getting it out of your head and into writing, you are promoting awareness by removing the myth from your illness. Your pain may be invisible, but that does not make it any less real, any less scary, or any less debilitating than a visible injury. We spoonies all have a lot of people to prove wrong, from the 1/4 of primary care physicians who believe most of their chronic pain patients are faking, to emergency rooms that are ill-equipped to deal with chronic conditions, to unsupportive families who refuse to do their research, and of course general stigmas against pain patients that have existed for ages. These are all barriers to effective research, communication, and seeking out treatment. But they are obstacles that we as a group can overcome.

Raise your voices, tell your triumphs and your horror stories alike, others need to see what we go through on a daily basis and speaking out helps to break down those barriers and create road maps for understanding the whole of chronic illness, not just the symptoms, but the underlying causes and the body-wide effects created by living a life in constant pain. I know it is difficult, but only when we are not afraid to share what we are going through will we transform the silent suffering of people with invisible illnesses and chronic pain into a growing understanding that we too deserve to be treated with the dignity, respect and even admiration for what we deal with on a daily basis. It’s not just an idea, it’s a necessary change and we have the numbers, the intelligence, and the determination to make it happen.

Click on the thumbnail below to go to the larger version of my painting for Chronic Pain Awareness:

Chronic Pain Awareness Month

Chronic Pain Never Quits, let’s give the huge number of people worldwide suffering with chronic pain conditions some hope! There are many misconceptions about people with chronic pain, and these can easily become stigmatization that negatively impacts those who already suffer enough going through the daily horror of chronic pain.

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chiaricontinues

chiariwife. chronic pain. awarness.

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