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.
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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

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

  1. Mary says :

    Feels like you read my mind. I am in my early 40s and have had chronic pain for 15 years. I have pretty severe cervical arthritis from a bad car accident and fibromyalgia that started after I got a flu bug that never completely went away. I know that judgmental face that doctors and nurses can give you, thinking you are faking it in order to get drugs. Thank you for writing this. It’s nice to know there’s someone else out there that knows what I’m going through.

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Mary, thank you. You are so kind for stopping by and saying hello, and for saying such kind things about my writing. I’m not writing this stuff for me, I’m hoping someone out there (like yourself!) doesn’t feel as lonely when they read it. I’m hoping that I don’t feel so lonely at the same time, so to hear that you feel the same way is healing for me too. I wish more people weren’t afraid to speak up about the current demonizing of opiates and all people who are taking them. Our numbers are incredibly vast, 100 million estimated chronic pain sufferers in the US alone, and worldwide the number is much more staggering. We aren’t alone, and we have a lot of power by putting our voices together for awareness and to decrease and eventually erase the stigma against physical and mental illness, both. It isn’t a choice we made. And we shouldn’t have to feel guilty, get dirty looks or horrible comments or fingers pointed just because we need help managing the pain when it gets out of control. ❤ I hope you have a low pain week, and thanks again for letting me know this resonated with you! Also, I think I found you on Pinterest while I was looking around at chronic illness/pain pins (it's like crack, that place), but I'm not sure!

      Like

  2. Barb Silvestro says :

    I’ve been dealing with chronic pain for four years, following a craniotomy for a pineal brain cyst that was causing late onset migraines. I’ve not had to go to the ER (yet) because thank God my primary doc and pain mgmt have been very good to me. I’m on narcotics and nerve pain meds which control my pain I guess as much as it can be controlled, though I’m practically bed ridden and can no longer work. But this is good to know as I’ve heard horror stories about the ER and I hope I never have to go. I carry a list of my meds and conditions from my provider web page on my phone… it has the doctors name, the diagnoses, meds etc. But I got some good ideas here so thank you. I hope I’ll never have to use this info – but glad to know it’s there

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Thank you Barb, for taking the time to say that you found the information useful, that means a lot to me. I am so glad you have a good team of doctors who at least acknowledge your pain and try to keep it controlled as much as possible, though much like you, at my worst there is nothing that takes it away. I too keep all the information I can on my phone, and tell others how to access it, including having it noted in my medical file that I have allergies, drugs I have taken in the past and my reactions, and everything I take now including supplements, all on my phone. I also include a lot more backstory on my illness in case I am unable to talk and with someone who isn’t very familiar with the timeline of my symptoms and all the treatments I have tried in the past. I think you are very wise to have that stuff on hand at all times! I should go back and update this list with a few more tips I have been told by doctors and other pain patients. I too hope you can avoid having to use this information!
      Extra spoons and low pain days, sent your way!

      Like

  3. Rachyl says :

    Thank you for sharing this post with us!
    I have struggled with chronic pain and severe illnesses since 2008 which required frequent hospitalizations (every 4-6 weeks) for 7-90 days at a time. It used to be complete hell when going to the ER, so much so that even when I was so near death I didn’t want to go to the ER because of how poorly I had been treated in the past.
    I learned through trial and error and even typed up all of my medical info including (1)Current Diagnoses w/diagnosing physicians info, (2)Medical history (such as sroke and pneumothorax), (3)Current Meds w/dose, frequency and Rx physician (4)Allergies(5)All physicians basic info (6)Surgeries and Procedures and anything else I could think of. Initially I typed it all up because its difficult for me to remember more than a few diagnoses (of 28 and counting) but then learned that it saved time with paper work at doctors appts and made up a folder with info on my many rare and misunderstood diagnoses. With the help of finding the right diagnoses and my folder with Everything Medical related, I have since been treated quite well. There have only been a few times that I have been treated poorly but its usually with a crabby nurse and nothing more.
    Thanks again for posting this! I have found that all medical personnel really appreciate it when patients come prepared.
    I hope that everyone who follows your suggestions will have experience a positive experience the next time in the ER as we have found.
    I hope you are relatively well!
    Huggs!

    Liked by 1 person

  4. Michelle says :

    Reblogged this on Life in the Autoimmune Lane and commented:
    Ever been in so much pain that you find yourself at the ER and unable to express yourself clearly? I have. I’ve also been treated like a drug seeker and there’s truly nothing more horrible that going to the ER and being treated unfairly or worse; not being treated at all.

    After 8+ years I just ride it out and don’t even go in anymore. I tell Big C, why go in when you pretty much know that you’re not dying? I’ve had an ER doc tell me that if I’m not having a stroke, heart attack, or aneurism then there’s really nothing they can do for me. In other words, don’t come in unless you’re dying. But ‘normals’ can go to the ER and be treated for acute pain with no problem. Do I sound bitter? 🙂 I haven’t been to the ER since we moved here, so please ER docs if you’re reading this I’m not talking about you!!
    This is a good read. Check it out. ~M

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Oh man, I really feel you on this one! I have become pretty bitter about my inability to use the ER, the fact that my level ten, which is someone else’s 14, gets treated like I’m just a whiny little baby. I hate how you lose if you stay calm and you lose if you freak out. So yes, it’s hard not to be a little bitter about it! I too completely shun ER rooms now, but I know there are those with chronic illness who use the ER once a week. I wrote this thinking I would feel more free to use the ER when I need it, but I still haven’t been. When I need to be taken to the ER I usually can’t talk anymore, I can’t get into a car, withstand the ride there, and then wait in a waiting room. it’s better to cry at home!!! I wish it wasn’t this way, though. It certainly isn’t right.

      Thank you so much for sharing and for the kind words!!! I really appreciate it hon. I went over and followed you on Bloglovin’ too, since I can’t add you to my WP reader, I’m loving reading through your blog whenever I have a second right now ❤
      sending you spoons and pain-free hugs!

      Like

      • Angie says :

        I feel the SAME way. Have been crying myself to sleep EVERY NIGHT this week, since my pain Dr. gave me epidural and facet joint injections, which were HORRIBLE! I’m in worse pain than I already was. My husband tried to convince me to go to the ER and I refused. What are they to do? I’m ALLERGIC to narcotics anyway! Can’t touch the stuff! Last tine I was there, they gave me Ibuprofen, after 4 excruciating hours at the ER. Really? Well, I prefer to do that at home, thanks.
        I’ve seen over a dozen Neurosurgeons throw in the towel on my case: six hemangiomas in my spine, at least two of which are large enough to get into places they’re not supposed to. One of these recieved radiation last year. Hasn’t shrunk at all. Add 8 herniated and bulging disks to the mix, plus arthritis, stenosis, and DDD. Ouch! ER is NO HELP for me.
        Thank you for sharing!

        Liked by 2 people

        • Jessi Finds Out Fibro says :

          your back and my back could be twins. I have several blood vessel tumors, scars, etc on my spine, DDD, desiccation of discs leading to a half inch height loss in two years, cysts of varying kinds (tarlov and something else), 11 Schmorl’s nodes, 6 or so bulging discs, and about the same number of completely torn discs, cerebral spinal fluid pushed into weird places in my spine, fused vertebrae from birth (possible Klippel-Feil Syndrome), and of course, I also have the dimple and bifurcated spine of Spina Bifida Occulta. Also my vertebrae slip out of place for NO reason, all the damn time and I have occasionally been noted to have weakness of hands, feet, arms, and legs. The arthritis is starting to really effect my life now too. getting out of bed if I accidentally rolled onto my back while I was sleeping = OUCH and waiting for four+ hours to take the pain down to a bearable level and gain most mobility back. it’s about a third of my mornings now. I hope they can shrink your tumors, and i’m sorry so many keep giving up on you, I know how that feels. sending love and healing your way, my dear.

          Like

      • Mallory says :

        That was a really great article to read. However what should we do when all that doesn’t work? I have arachnoiditis and doctors here are very ignorant and think they can do whatever they want. One afternoon I was grocery shopping with my husband and kids when all of the sudden I lost all feeling in my arms and legs. Now I’m used to them being numb but this was beyond what I normally dealt with. My husband had to run to the other end of the store to grab a scooter cart for me. I called my dr which by this time was the after hours nurse. She told me to go to the er so they could make sure there wasn’t anything else causing it as arach causes it as well. By the time I got to the er it was past the kids bedtime. My son was 4 and my daughter was less than 1 and they were both cranky. The Dr came in and asked me what was going on. I started telling him and I even told him about my call to my dr. As soon as I said the word arachnoiditis he quickly looked up from my chart and grilled me about it. Wanted to know how I knew I had it, who diagnosed me, when I was diagnosed, how I was diagnosed. Then he checked my reflexes in my legs. He never did a neuro exam which he should have based on my symptoms. He told me he could order an mri but it would probably take a few hours to get in. He knew my kids were restless and this was his way of scaring me off. But I told him I would wait. He left and the nurse started asking me questions for the mri. I told her that I was highly claustrophobic and needed something to keep me calm. Then I told her it was time for me to take my pain med as I took them on a schedule and had them with me. I asked if it was ok for me to take it. She left to ask the Dr and I’m not sure what she asked him or said to him. When she came back to the room she told me that all he would give me for pain was a percocet which was like candy compared to my meds at the time. I told her that I didn’t need anything from them because I had mine with me and was just making sure it was ok to take. The Dr ordered a full spine mri and by the time they got to the lower back my pain med and the xanax they had given me had taken full effect. I have myoclonic jerking which is worse the more relaxed I am. This made it hard for them to get a clear image. They finally sent me back to my room. My kids had finally calmed down and were almost asleep when the Dr burst in and loudly said my mri was “stone cold clear” while wearing his smart ass victory smirk. By this time I knew I wasn’t getting anywhere with him so I said ok and left. This hospital has a system that allows patients to log on and view their records. So a few days later I checked my records for that night. On the mri report for my lower back the Dr that read the images noted that the image was not clear enough to make any determinations and they were unable to obtain a clear image. This means the er dr lied to me when saying it was clear. He spent my entire visit trying to disprove my claim of having arachnoiditis instead of examining me for why I was there. Since then I have had nothing but problems with that er. The worst part is that I worked there at the time and was treated so horrible. Another visit I called my dr and had him on standby and took my records showing my arach diagnosis. This made the Dr so mad that he still tried to discount it by saying it just meant my dr didn’t really know what was going on. Crying and in excruciating pain I asked him to call my dr. He refused and when I asked to see another dr he refused to let me do that too. I asked for the house so supervisor but she wasn’t any help either. She kept a cold straight face, want apologetic or compassionate about my experience and kept telling me there was nothing she could do. I looked her in the eye and told her that it sickened me to work for a place that was treating me this way. I have not once asked them for pain meds, have always brought mine with me, and was always very nice to the staff yet they flagged my chart claiming I’m a drug seeker and I’m always rude to the staff. So when all this fails, then what?

        Like

        • Michelle says :

          Oh Mallory ~~~ (soft hugs)~~~
          Reading your story brings tears to my eyes. I can so relate to how you feel! …I truly do not know what hurts the most, our painful illnesses we’ve been dealt with or the heart breaking sadness we feel from the place we advocated and gave our everything to…A HOSPITAL WE WERE EMPLOYED AT! Being “judged” by coworkers & collegues that I once held on a pedestal… heartbreaking! I dedicated 24 years of my life being compassionate and non-judgmental to anyone that crossed my path. I guess I’m just old school… I was taught, in my nursing career, you see someone in pain or suffering… you don’t judge! All patients should be treated with respect! Like I said before, I’m not
          sure what’s worse for me, my RSD pain or what a very good
          physician friend (not my dr., but a very good, he’s retired now,
          friend) says that he feels I suffer from as well, Takasubi💔. Broken heart syndrome. Who knew? To suffer chronic pain from any and all of these conditions alone is tragic in itself, but to add the overwhelming sadness and impending doom, that black cloud, so to speak… oh my goodness! It truly is a CONSTANT day to day, what will tomorrow be like BATTLE! …I feel your pain and anguish girl. You are NOT ALONE! Ya know, I never write on these forums or talk on chat rooms… just usually scroll through relating my self to a lot of chronic pain sufferers. For some reason though, yours really struck a chord with me! I am so sorry! I hope today is a good day for you and anyone else who suffers with chronic pain and or deep heart break of any kind!
          ~chelle~

          Liked by 1 person

          • Jessi Finds Out Fibro says :

            Michelle, thank you so much for reaching out to another fellow sufferer with such kindness and empathy. It makes me all weepy to see what we have built together here and across the web, a huge network of spoonies all wanting to lift each other up, no judgement, no comparison, no competitions or drama, just love. Your beautiful comment to Mallory made me want to reach out and hug both of you. ❤ ❤ ❤ Thank you for making an exception and stopping here to leave a supportive and wonderful comment, you're a superhero my dear.

            Like

        • Jessi Finds Out Fibro says :

          *hugs* Malloy, my heart hurts for you and for everyone else who cannot receive adequate care because of a broken system. I wish I had the answer, I wish I could give us the piece of advice that will get us perfect help, every time, but as you said, you can do everything right and have a real emergency and still get ignored, or called names, or institutionalized in the worst of cases, which happens to chronic pain patients more than I ever knew before I started writing. I am so glad you told that supervisor that it sickened you to work for a place that could treat you so coldly in such a dangerous and painful situation. Some really do not care at all, this is an absolute fact and a part of dealing with chronic pain, but I wish I could change that, so very much.

          Sending you so much love and compassion, I know it doesn’t help anything, but you are never alone. So many are walking, crawling, and rolling alongside you. ❤ ❤ ❤

          You and I are in a similar place where the ER simply isn't a helpful option anymore unless something obvious and fixable presents itself, which never seems to happen. I am so fed up with my ER that I didn't even go in when I had a concussion with two black eyes and a separated rib or two with a nasty hematoma. I had to wait two weeks to see my regular doctor but I waited because the ER would have assumed I was looking for pain pills, or a victim of domestic abuse, or somehow otherwise completely missed the mark. I really, really, really empathize with your story and am thankful that you shared it, because this happens to so many of us and unless we speak out, nothing will ever change.

          Two things right away that may help you a little tiny bit, and I have heard over and over and over again from doctors, nurses, and friends with chronic illness, is that having a medical binder and one of those new digital alert bracelets ($20 on amazon) that plug into a computer and let anyone download your pertinent health information in an emergency, complete with contact numbers and explanations of your conditions. Those two things make it clear to a doctor that your conditions cannot possibly be made up. I know it's ridiculous that they won't listen to us, that they can't seem to take us seriously or recognize what severe pain looks like.

          I do know spoonies who go into their ER twice a week and get treated very well, but that has absolutely NEVER been my experience as a person with a chronic illness. Even when I'm sweating buckets, with my skin cold and pale, and the butterfly rash on my cheeks and nose, unable to crane my neck at all or lift even light objects like water, and my feet and hands and lips turning blue, with loud cracking joints and a limp, I still get treated like a hypochondriac. Even when my blood is clearly showing an infection or allergic reaction, I have been sent home, and I have been told it's all in my head, and I have been told to "just calm down and get over it".

          The hardest lesson for me to learn was not to expect help from the hospital. And to expect to wait and wait and wait for help from my regular doctor. It sucks. I'm not trying to sugar coat how much this blows, how unfair it is, how fucked up. And I'm not trying to say "just get over it" or "deal with it" in any way, I hate that attitude, that's what doctors treat us like and it's horrible.

          I wish I had an answer for you and for everyone with a painful or frightening chronic condition that would make these heartbreaking stories stop pouring in. I wish I could slap every single doctor that rolls their eyes at chronic illness warriors at the end of their rope. I wish I could get better care in the ER too, I really do, but other than changing how I interact with doctors, which has been tough and requires the doctor to participate in open communication too, keeping my medical binder full and up to date, recording my pain levels and symptoms whenever I can remember, and also having my psychiatrist put in writing that I’m not faking my symptoms or malingering has helped.

          What would help me more is if I could get my primary care to write out an “escape plan” for very very very severe pain, the kind I used to go to the ER for but now refuse. The escape plan should include a letter that you can keep in your medical binder with your doctor’s phone number, explaining what underlying problems you have and some of your symptoms, as well as what has worked and not worked for the various worst pains, and explaining that your pain is valid and needs to be treated as a medical emergency. That would be HUGE in terms of getting help, but although she has talked to me about needing one, I can’t get her to actually write anything that will help me during an ER visit. I am not sure how long it will take for her to finally give me one, but that is a very big part of being taken seriously in the ER and unfortunately, most of us are in an emergency with out bodies or our pain precisely because our primary care and specialist doctors do not take us seriously or understand the implications that pain which never ends, which only gets worse and then eases up slightly, only to get worse all over again.

          The sad thing is that we can do everything right, and the system is against us. That’s why I was forced to write this in the first place. It is awful how we are treated, and it needs to change. I am tired of wondering “what kind of chest pains am I having right now?” and being too scared of how I will be treated, what will be written in my charts, if I go in to make sure I’m okay. I too have been flagged as a drug seeker, by my primary care doctor's medical assistant, by past primary care MD's, by nurses who laughed together outside my room about the "crazy patient", by ER physicians. The atrocities against us are endless, the ableism daunting and ingrained. But we must keep speaking out and drawing our line in the sand. The louder we get, the less they can ignore us. We are many, we are incredibly tough, and we are persistent enough to accomplish anything, together. I believe we can challenge the stigma against us, I believe we can reverse the infuriating assumptions, and I believe we can finally have our pain validated, recognized, and treated. Maybe not us, but the next generation of pain patients will absolutely not suffer like we have. Thank you for sharing your story of strength in the face of adversity. Others can only hope to follow in your brave footsteps, love.

          Like

  5. Sunshinebright says :

    Reblogged this on Sunshinebright and commented:
    Here’s some very good ER advice for people with chronic illness and suffering pain.

    Liked by 1 person

  6. randomlyrobyn says :

    Brilliant advice. I too have stopped even trying to go to Accident & Emergency when I am have a flare-up (I have endometriosis, PCOS and Interstitial Cystitis) because of the way I am treated. Years ago I was experiencing such severe pain I phoned several doctors before going and was treated like a drug-seeking child who did not know anything. The cause of my pain was undiagnosed at the time but that experience has made me so wary. I was eventually admitted and left for a week in extreme pain with my usual meds taken off me and given a scan and an xray then told I needed a psychiatrist.
    Thanks for writing this. I don’t think people realise how much of a struggle it is when you have chronic conditions, constantly having to justify the pain you are feeling.

    Liked by 1 person

  7. Allison says :

    Hello. I do have ad my fare share of horrific ER experiences. Two just the past week and a half. I’m on a mission now to help better define as near iron clad as possible. Hey Jess, I love your ideas and will implement some ideas I’ve picked up from your article. I have Systemic RSD/CRPS Can you clarify what you mean by#6 If you have a CRPS card, hand it to them and ask for it to be put in your file. What is a CRPS Card and what type of information would you consider important to have on it. I am looking into getting a medical bracelet. Even though I rarely wear jewelry, this is important enough. It’ll will take time to get use to it, but I have techniques to use for that. Thanks in advance for having this blog, sharing your thoughts to the universe and catching those of us that could use the advise!!

    Liked by 1 person

    • Allison says :

      please excuse all my typos and lack of clarity of completing a full thought. Sorry. I’m a month into withdrawing from Cymbalta. I may be falling into the ‘Cymbalta Discontinuation Syndrome’ – yes, this is a true thing. I’m waiting for my EEG results. When I was getting the EEG, it instigated another episode, so I think it will provide me with some directions, maybe even an answer. So I’ve contemplated going to ER a few times over the weekend again, then quickly remembered my in humain, horrific experience and as better off going through the episodes at home.

      Liked by 2 people

      • Cherie says :

        Thank you, this article was very informational. Although I’ve never (yet) had the experience you spoke of. A few years ago I went to the ER with chest pains but none of the classic signs of a heart attack, they treated me very nicely and ended up admitting me to the hospital and ran some tests and they came to the conclusion the pain I was experiencing was from my fibromyalgia and that I should follow up with my pcp. Over the years I’ve made changes to my diet, which seemed to help with my pain. But now when I have a flare I use a T.E.N.S. unit to deal with the pain and it is a real lifesaver for me. I enjoy reading your posts and hope what I’ve stated here could help someone. Have a great low pain day!

        Liked by 1 person

  8. Melissa says :

    Hi, I just found this as I’m trying to distract myself from so many of the same things you mentioned but I’m too sick and weak to write it out. I had a burst fracture a year ago plus several other injuries from a bad car accident. The “be thankful you aren’t in a wheelchair”… and the irritability trembling and haven’t showered in a few days…thank you for being so real. I will not be going to the er but hope to find a good Pc very soon mine has just went out of network Booooo…☺

    Liked by 1 person

  9. Brittany says :

    My er has a sign that they will not give meds for a person with chronic pain having a flair. I can’t even get more than toradol, when I’m already on tranadol and oxycodone 4 times daily, and I go in with any issue. I’ve been in with ruptured ovarian cysts, a nasty broken foot, migraines, suspected blood clots from a picc line, kidney infections and they won’t touch me. I wish you all the best of luck, but more and more er’s are taking to this procedure.

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      I have seen this policy too…. If your ER is like that and you have a chronic condition, the advice to always stick with the same ER is bunk, unless it’s the only one nearby in which case I feel for you, and I have been in that horrible situation. I am scared of how many hospitals and ER’s are taking this approach too. Completely terrifying. The definition of pain is “anything the patients says it is”, medically. But when we aren’t even allowed to begin to advocate for ourselves, it’s obvious that part of the oath to do no harm is being ignored. I hope this trend starts to reverse as people realize that there is no other treatment for chronic pain breaththroughs and flare ups. We go out of pure desperation, it’s a not a place any of us actually want to be. Most of us, I’m finding more and more, will do ANYTHING not to go to the ER and still the myth of the malingering, drug seeking chronic pain patient continues to exist. I wish you were being treated with more human dignity, to be turned away from the ER with a broken foot or a kidney infection or any of the other things you listed is just HORRIBLE, completely despicable. I’m so sorry, Brittany.

      Like

  10. Melanie says :

    My primary physician has gotten to where she says to go to the ER for just about anytime I need to because she just doesn’t know what to do. I have been to pain mgmt doctors and every time I go they want to put me back on morphine. But then in the same breath they will tell me that nothing really works for Fibro and chronic pain. They just say learn to leave with it and exercise more or stay on Morphine. Recently I found out that my right knee is bone on bone so exercise for me is just not an option. And of course they say I’m a bad risk for a knee replacement. Does anyone else run into these kinds of problems that I find comes with living in a small town?? I also refuse to use the ER as a Dr’s appt. They just don’t get it and don’t know what to do.

    Liked by 1 person

  11. Auntie Missy says :

    My husband suffers with fibromyalgia and chronic migraines, but is allergic to opiates. The ONLY blessing for us when he goes to the ER is that they have never accused him of being a drug seeker because he CAN’T take most pain meds. When he goes to the ER, they realize he really is desperate because there really isn’t much they can give him. Mostly he’ll end up getting a combo of compazine and toradol, and IV fluids. As frustrating as it can be, we at least don’t ever feel like they treat him like a drug seeker. But we certainly have sympathy for those who deal with chronic pain and DO get treated that way. I don’t think anyone can really understand what it’s like to live in chronic pain unless you have been there yourself or lived with/loved someone who does. It’s not fun.

    Liked by 1 person

    • JNW says :

      This is how it goes with me. I’m allergic to dilaudid and experience some icky side effects from the heavier opiates. I respond extraordinarily well to Toradol (have an at home prescription for it, but sometimes have to go in for injections or IV therapy). It’s pretty amazing when they realise that I’m in there not for opiates, but for anything that will work… usually I’m able to hold out for office hours since I was able to get the home prescription. It’s saved me from probably 5 ER trips the past 18 months. But now I’m moving out of the country and getting worried.

      Like

  12. Nicki says :

    I hate reading how all these people that genuinely need the help of the ER are being treated like this. I thought or hoped it was just me. Yes I’ve had númerouse visits to the ER that were horrid doctors coming right out ” I think you seeking drugs” so I told this guy well then treat me and don’t give me any pain medication. By the end of the night he was ordering just what he said I was seeking pain meds but because my BP was out of control because if the pain. I’ve had nurses say well your not monning, crying acting like your in pain. Why do I a patient have to explain to ” perfecionals” that I have pain every day am I to walk around crying and treating people badly because I hurt? Because I could but wouldn’t that make me just as miserable as those judging. I just wasn’t to live life to the fullest and ya I don’t do 1/3 of what others probably can but that’s what I wasn’t. Yes I do take pain meds but not to be miserable I take them so I can have some kind of a life. I try to exercise I eat healthy, try building my ammunsystem but all they see is how I take pain meds when it gets where the pain is to much. I’ve had doctors tell me I should stop taking opiated all together and go smoke some pot. And then I’ll have a completely active life? Um I take pain meds so I can do more, have more of a productive life and here he is judging but if fact he is saying to go take another kind if drug not a completely safe drug and yes the pain meds make me function were what he is saying I will what forget I’m in this hell I’ll simply forget I hurt? I don’t like being high and yes a doctor suggested I go get medical pot cream. My skin hurts my mussels feel like there turning to cement, my back but I’ll just rum pot cream all over and I have a great life. Let me get on that. Haha you have to laugh at these profetionals and how it muct be hard to be so judge mental your now an idiot, no conpation, yet they have years and years behind them to be in the health care industry they picked a job of helping people with health conditions and even said they would do no harm? Trust me when you go home from the ER and have been treated so bad not at at first because when your in enough pain to go to the ER you don’t care what happens or who said what. But a couple days whatever it takes it hurts it does harm! Please if your hurting you may be waiting your time but seek medical attention untell someone helps you. We desearve good medical treatment and won’t just roll over and act like all this is okay. They want to be a doctor then they need to treat patients they went to nursing school to be a nurse. Nurseing doesn’t require judgment. I wish I could help all of you and myself. It seems like such an easy fix yet we all are going threw it ? Maybe doctors must be educated in such conditions to work I. An emergency setting? I have no clue?

    Liked by 1 person

  13. Melissa Smith says :

    I went to the ER told them I had fibro and neuropathy when I was told by the ER Dr not to ever come back for this complaint and to go to the MEA because it wasn’t considered an emergency. I haven’t been back.

    Liked by 1 person

  14. Pam Gahagan says :

    Thank you so much…I’ve too had the worst treatments from E.R and Quack Dr’s ..I’m finally glad to hear somebody who has similar issues with pain meds …I currently just take oxycodone 10mg 4 xs a day because I do push thru everyday to do my job and and mom and pet owner..I was on morphine but it made to damn sleepy when I’m already tired extremely tired all day plus I knew the later effects by it..but because I was on them for a year I’m loosing my teeth no body told me about the dry mouth part that decays your teeth …so now I have an ugly smile..I hurt so bad so bad I mean so bad I hate my body..I’m so glad I have friends like you

    Liked by 1 person

    • CC says :

      I’ve created a social network for people with disabilities and thought you might like to check it out http://mymiff.spruz.com

      Like

    • Jessi Finds Out Fibro says :

      I’m so sorry to hear that you are suffering and dealing with all the losses of chronic illness — our relationship with our bodies is a big one, and yes, absolutely no one thinks to tell the 14 year old JRA patient that she is going to gain 60 pounds on steroids and nerve medications and that it will destroy her self image, no one thinks to tell someone in a relationship that their sex life will completely tank on pain meds and antidepressants, and I have yet to hear one doctor warn me about dry mouth even though it is a very real and serious problem. There is bottom line not enough knowledge, support, or empathy for us or for our experiences. ❤ ❤ ❤ sending you lots of love my dear, and I encourage you to make loving your body again a priority. It's hard, it's so hard, I know having watched my body change drastically in my 20s, it is a huge perspective shift to love and appreciate your body for whatever it can do, even when you are feeling less than confident about your abilities or about future changes, you can still recognize your own beauty and celebrate it, even. My heart goes out to you and to others who push through to work and raise kids, that is just too much for me to even imagine putting my body through, but I admire you greatly for making it happen despite all your challenges. Women like your are superheroes! You shouldn't have to feel down on yourself for your battle scars, too. ❤

      Like

  15. bifempagan says :

    Just had a WONDERFUL experience with a Veteran’s hospital last night. I’ve done something to my knee, but I have fibro. Big letters in my chart, saying my allergies (every freaking opiate… VERY obvious in not drug seeking), but the bitch of a doctor treats me like shit every time I see her. Is just finished telling her I’ve been popping 800mg ibuprofen and Tylenol like candy, and she tried to tell me that my chart says I’m allergic to NSAIDs (sign of a drug seeker).
    She argued with me about what my primary care doctor had done, argued what he’d told me he suspected, that it’s a sprain, and it’s no big deal. I was in tears of frustration by the time we left.

    Like

    • Jessi Finds Out Fibro says :

      That just sounds horrible, I am so sorry. I dislocated my wrist yesterday (I got it back in within a few minutes) and am currently only able to type with it wrapped and splinted and it is pretty swollen. Also painful. I would love to go into the ER, but I’ve been laughed at when I try to explain how my collarbone pops in and out and my wrists, ankles, fingers, hips, shoulders, and apparently any vertebrae at any time, can all subluxate without warning. What was a safe activity yesterday can suddenly become a trigger for dislocation and severe pain. Since I already know that doctors don’t believe a girl can straight-faced pop a dislocated hip or shoulder or wrist back in place, but I do it all the damn time. Maybe that’s why no one believes me, because I don’t ever seek help for it, just write down what happened and bring it with me to my next doctor visit, always 6-10 weeks apart. I’m trying to work with a therapist on sorting out what is normal to go to the ER for and what will not be a productive visit but I’m finding that staying at home and toughing out horrible pain is less traumatic than an ER visit pretty much all the time unless I know what is wrong and someone at a hospital can do a better job than me in a shorter amount of time. Since that’s usually not the case, I wait and cry and wait some more. Not ideal. I can’t believe so many chronic pain patients are allergic to opiates and still get treated like garbage. Just so maddening, at what point does a doctor’s medical oath actually come into play anymore? ❤ wishing you a speedy recovery from your knee injury and not too much trouble from fibromyalgia while you're healing. So sorry you're in that much pain and no one will even respond to you like a human being. Totally messed up. Injuries should not be treated as if the underlying chronic condition always trumps the injury and we can just "carry on" somehow.

      Like

  16. goswellen arellano says :

    Over half of doctors don’t believe in fibromyalgia. I think you might have a better time if you focus on the conditions that are more concrete that every doctor does believe in.

    Like

    • Jessi Finds Out Fibro says :

      It’s at 1/4 of primary care docs and 1/6 of pain specialists on the last survey who do not believe in fibro. That alone tells me that if the numbers are getting better, if more doctors believe in our VERY REAL PAIN, then we are finally getting somewhere. I won’t stop being honest with my medical professionals because who knows what new breakthroughs are coming in science? I wanna be in a place where I can take advantage of whatever comes up, and I also want to turn the tide of stigma and stereotyping of pain patients, so that we can finally receive the care that we deserve. This post was not aimed entirely at people suffering from fibro, but at all chronic pain sufferers. Not just fibro patients are disbelieved, many others, also with legitimately painful medical conditions, get mistreated by doctors and other medical professionals. We are making progress, together, and just because there’s a chance I will get a doctor who doesn’t believe that fibro is real, does not mean I will stop bringing it to their attention. Could I probably get better treatment if I never brought up my PTSD, anxiety, chronic fatigue, or fibro? Probably, yes, today. But next year, who knows! And ten years from then, the scientific breakthroughs that are being discovered right now, the physiological changes in the brain due to the aforementioned conditions is finally being seen. Also, in biopsies of patients with fibro, extra nerve endings and blood vessels were seen in almost every case of clinically diagnosed fibro, telling us that the clinical diagnostic criteria is doing its job. Fibro is plenty concrete, and its my job to keep on spreading knowledge and truth, instead of rolling over in the face of medical mistreatment. My pain is not only from fibro, not in the slightest, but I do tell doctors that I have fibro every single time. I know you mean well, and it does suck that our options are to lie, stay home and suffer in silence, or be treated terribly at a hospital, but I’m not giving up until every doctor I talk to genuinely understands and believes what fibro is capable of.

      Like

    • Jessi Finds Out Fibro says :

      I want to keep fighting even if it personally costs me, because in the end, it’s the 5+ million worldwide who have fibro, and those who will become ill in the future, that I’m concerned with. This on a completely sleepless, extremely painful night when I would love nothing more than to give up, go in to an ER I have never been to before, tell them about the car accident four years ago and all the physical therapy, all the spinal diagnoses and leave out the fibro, the mental health diagnoses, and chronic fatigue/M.E.
      And if we think it’s bad having fibro and not being believed, imagine having late stage Lyme Disease… those poor souls get treated like a joke while they are dying. Our medical system has to do better, and we have to help it along. At least I do. ❤

      Like

  17. notsoholymoley says :

    So glad you brought this up. On the rare occasion(s) that I have had to go to the ER I have told them up front that my pain doc advised me to specifically tell them what I needed (toradol injection) and that I was not a drug seeker. He has me prodie his name and a list of my meds. It visibly changes their attitudes. Ironically my daughter is an ER nurse. She informed me (with her nose in the air) that pain is not an emergency. Amazing.

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      That’s so painful that your daughter doesn’t even recognize what an emergency severe chronic pain can be. Over time even moderate pain can completely change a person and limit their lifestyle in a way that few people really understand unless they’ve lived it. It is so awful that we have to come in to the place that is our last resort, the place we turn to when all other options are completely exhausted, and we must also at the same time prepare for battle. I’m glad that you still are able to get relief when you need it. The only thing that works for me is dilaudid on top of more dilaudid. So of course my trip goes very differently, the only white flag I have to wave is my doctor’s personal cell phone number and the entirety of my medical binder. ❤ Sending you love and pain-free thoughts and thank you so much for taking the time to share your story with us.

      Like

  18. Elaine says :

    I have fibromyalgia and cervical dystonia. I take several meds, including phenergen because the dystonia is so crippling I get sick to my stomach with the pain. I’ve gone through dozens of doctors and was misdiagnosed several times.

    Having said that, I also work in an ER. I know people are angry, but you have to understand… for every person with fibro who walks in the door there are 50 drug-seekers. These are people who are either abusing the medicare system, or don’t care that they’re being billed without insurance because they are addicted. Also, please understand that the purpose of an ER is to save lives, and 90% of people coming in are in pain. Pain can’t take priority, and everyone in there considers themselves as much an emergency as you.

    Also understand that ER doctors are not rheumatologists. They are also not dentists, orthopedic surgeons, gynecologists… they are trained to save lives, and they don’t have the luxury of having you make an appt 3 weeks from now so that they can give you the time you deserve.

    My advice? Go see a specialist BEFORE you have a flare up.

    Like

    • Jessi Finds Out Fibro says :

      That’s great for those of us who have insurance that covers specialists and primary cares who will send us to the right one, and it works when your specialist isn’t booked out five months in advance, and it works when your disease is being actively treated and the treatment is actually working somewhat, then I agree with you. But in the wild and wonky world of living with chronic pain, many of us cannot work, are waiting for disability or have been turned down, cannot afford to see a regular doctor much less a specialist, and then WHAM an emergency. And seriously, we are talking about things like kidney infections, broken limbs, etc beign ignored BECAUSE the person has fibro or some other chronic pain condition and the practitioner is a complete moron. Fibro is fake, therefore this broken ankle and these iffy blood test results must be too. It really does happen. Hopefully not where you work. Seeing a specialist also does not guarantee that your pain will be addressed properly. I’ve been seeing specialists who aren’t very special in their “ist” for nearly four years now. No diagnosis besides fibro and fibro comorbidities, but most doctors agree that I’m just too unfunctional to have ‘only fibro’, they just can’t figure out the mysterious real cause of all my infections and pain and dislocations. So while I keep waiting and waiting and waiting, I think I have done pretty well avoiding the ER for over 18 months, but tonight while I am stuck away with knives in my shoulder, head, neck, and back, with my groin pulled from trying to get into the car earlier, and my wrists both healing up from dislocations, one last week and one yesterday, and this migraine/occipital neuralgia that will not quit for days, I want help. I want to be able to breathe without feeling bile rise in my throat from the pain (yes, I know that phenomenon well). I deserve relief and my charts clearly state that I deserve relief and am not lying. I have a letter from my psychiatrist saying I am not malingering or faking for drugs or attention or any other reason, and to treat my pain as urgently as possible. Does it help? No, no it does not. I get accused of being a drug seeker by my primary, my rheumy, and loads of nurses and medical assistants and I have just HAD IT UP TO MY FUCKING NOSE with being treated like worthless trash when my life still matters. My voice still matters. Even if it shakes and is hollow and weak from all the pain, I still believe in standing up for our right to pain management. If pain clinics were not just pushing injections, methadone, or nerve medications that make us feel dissociated and cause mega weight gain, maybe pain patients wouldn’t show up in the ER so often. I do agree that the ER is the last, last, last option, but shit happens and we should be allowed to use the ER just like anyone else is allowed to. Flares are not always predictable, and if you are living undiagnosed they are often completely without a pattern, or so it seems. Pain is an emergency in its own right, and if we had a better place to go, we certainly would, but there is no place for many of us to turn whatsoever. I’m stuck somewhere in the middle, i have a doctor who is okay at her job and up until last week seemed like she was genuinely interested in helping me, and I have insurance, but only because my mom is paying out of pocket for mine every month, and I have some meds and some diagnoses, but not nearly enough to figure out the whole picture of adequately treat breakthrough pain at home. Oh I have tried so many times to get my doctor to write an “escape plan” for me to use in case of emergency pain, but she just nods and says it’s a great idea and then changes the subject. I’m not saying your wrong, just that not everyone is lucky enough to be able to proactively prevent flare ups, and it’s not always our fault if that is the case. I do advocate living in such a way that flare ups are less common and doctors who are familiar with your history are handling your case, but when you’re at the end of your rope, being told flat out that no one will help you, not even the ER, is a huge blow, one that I know people who have taken their own lives because of. I know it’s not ideal to see chronic pain patients pop up in your workplace, but I think it’s better you have people with chronic illness walk through your doors who have a list of medical conditions and medications as well as allergies, who have some notes from their doctors and phone numbers of their doctors, those of us who are prepared and who are working with a doctor actively are less likely to be labeled drug seekers or fakers, hopefully. Ideally, yes, avoiding the ER is a good thing. The sad fact is that I have looked at what the warning signs are for drug seeking behavior and when I’m very sick and flaring very badly, I pretty much hit all the bonus points for being an obvious “drug seeker”. Unshowered, shaking, nervous or very upset, emotional and all over the place, and totally desperate for help. I understand that the ER is there to save lives, but we cannot ignore or forget those who are in so much pain they are willing to take their own life and have been snubbed by their doctors or turned away without help by their pain clinics or their ER. Pain can and should take a priority, maybe not in the ER, I agree that’s not where we belong, but when we have no where else to turn, seriously NO WHERE, the ER is supposed to be able to help and I just wanted to ensure that as many people as possible aren’t going into the ER feeling like they’ve already lost before they even talk to a medical professional.

      Like

  19. ebitogu says :

    Reblogged this on togusstage.

    Liked by 1 person

  20. American Woman says :

    The last three doctors I’ve seen for the chronic pain of Fibromyalgia, MDD, GAD, etc. They are all in the Methodist Health System in OMAHA, NE. Stay away from this corporation unless you want to be treated like a drug seeker, doctor jumper and a liar. IMHO, you would be wise to stay away from Dr. Chad Reade. He made fun of me the entire time I was in the exam room. Laughed at me. Opened his eyes very big and said, “Oh, really?” with a terribly sarcastic tone. My GYN suggested him and I gave him a shot. My GYN requested, in writing, thyroid levels. They charged me for it but no phlebotomist ever entered the room.

    Like

  21. Heathers Helpers says :

    I am so happy that you left a message on my blog because it led me to yours. 🙂 I really enjoyed your tips here and look forward to reading your newer posts tomorrow on my rest day.

    Liked by 1 person

  22. Cathie Hayes says :

    I have always kind compassionate care when I had to resort to the ER in the middle of the night at the Headwaters Hospital

    Liked by 1 person

  23. BarleySinger says :

    Good information, and it would WORK if there was such as thing as a “Pain Doctor” who a person could regularly see in my part of the world (and who treated these conditions as if it were IMPORTANT). Our system is currently broken.

    We have had good luck with Dr Palls work. He and Dr Grace Zeim have done good things. Pall got Fibro himself, after a long career of teaching doctors in Washington state. He was dissatisfied with what was known (and not known). It is unlikely you will hear about his protocols from traditional western Fibro doctors (in part because they are perpetually 20 to 30 years behind on everything).

    Dr Pall is why I have survived being taken from 180mg morphine a day, down to 30mg (and dropping by “Royal Edict” of the South Australian DDU).

    My wife has been in extreme chronic pain (at times slowly killing her by starvation) since she was in her teens (she is 43 now) and I have had a lesser version of these issues. I’m 52 and stopped working in 2002. I’ve been in an emergency room for extreme pain. I was sent home with no help. They would not ever send me back home by ambulance, and so I had to take a $1200 ambulance ride. At the time, aside form my other issues, I had a gallbladder bigger than a football… all unknown to the people at the ER because they CHECKED ME FOR NOTHING. That is what ER people do best. Nothing. They do nothing very very well.

    These days if you are in Australia and in pain the system just abandons you. Suicides in peoepl in pain are quite common now. Much of this comes to the fact that Australia is constantly trailing the USA .. a number of year behind.

    Tony Abbot (our Prime Minister) is our “Dubya”. In 2003 we hit the era in Australia which was the 1990s in the USA … in which EVERYONE suddenly got told “no more pain meds”… and suddenly a lot of the US states had efforts to legalize “euthanasia”. I remember that. My wife barely survived it.

    I’m sure you remember the 90s. By 1992 the Oregon legislature had made access to pain medication for anything OTHER than cancer…a felony to the doctor (20 years per offence). I remember those days.

    The hospital Pain Clinics here have a 4 year waiting list. They are 3 hours drive away (can’t drive that far). The private specialists (also 3 hours away) charge $600 an appointment, and have a 4 month wait.

    Before 2003 South Australia had a world envied pain management system. In 2003 the “Drugs of Dependency” unit in my Aussie state was ripped from the Pain Specialists and put into the hand of the people who had only (in the past) been running the methadone clinics (people with no knowledge of pain medication and a bias against all pain meds).

    You see, in order to get pain medication where I live the DDU has to give your pain specialist an authority. If they don’t like you, your diagnosis, or you doctor… you get nothing. If your dose is higher than they like then they send you (mandatorily, at your expense) to doctors of THEIR choice until one of them says you need to pain meds. Each doc you see who does NOT agree with their intentions (you getting nothing), will result in a nasty letter from the DDU going to your doctor and claiming you did not comply and see the doc they told you too (which you had) They also like to lose all your paperwork & claiming you have never been a pain patient).

    I have nerve pain, bone pain, lymphatic pain, myofasical pain syndrome, fibro, chronic fatigue (and I died for a while last November). My wife has all of this in the WORST form any of her docs has ever seen…plus Ehlers Danlos (classic type 2) so everything rips and nothing heals.

    What I find most annoying is that NO specialists seem to read. They stop at graduation, and are then taught by senior doctors (as they train) who have not read anything in 30 years. only 10% of doctors are scientists. All of the doctors I have seen are at least 20 years behind on everything. Most of them have never heard of the Cytochrome P450 system.

    Liked by 1 person

  24. Pamela says :

    This post sums up exactly what I have done for the last three years, although I have been diagnosed for 16 years. Why? I have to use the ER as my primary and only source of pain medication. With the exception of the three times I was actually admitted, it has been the only place I can go when it gets that bad.

    When I lost insurance coverage in Feb. 2014, I detoxed cold turkey from Cymbalta, Fentanyl, Lyrica and all of my bimonthly pain management treatments. 12-15 shots into the various places in my body that have unrelenting pain. Again why? I am one of the almost 800,000 (at last count) individuals in the great state of Florida who cannot get Medicaid and cannot afford to pay for the marketplace coverage that I need to doctor at the proper level. I qualify for share of cost Medicaid, a situation that is a circle of foolishness. In order to have Medicaid for the month, I have to incur at least $1100 in approved medical charges. However in order to be seen by any doctor they require you to meet the share of cost PRIOR to making your appointment. And how do you incur charges? By going to the doctor! To add to this foolishness, one visit to the ER can cover that $1100 most times but I need to do it as close to the 1st of the month. Why? If I go to the ER and/or am admitted it takes 7-10 from the last date of service for the hospital to generate the bill and then another 14 days for DCF to process it. So if it’s a month with 31 days I might be able to see my pain guy, get some pain meds and some shots (last time was November 2014). All of this as the legislators in my state of residence continue to battle each other and the federal government. As people suffer, longer, and some pass away.

    Right now the one hospital in the area has a grant program that provides preventative care (physicals, sick visits, basic gyn coverage). The only medicine I she can prescribe is Lyrica, which at a higher dose has more side effects for me. 20 pounds gained in 3 months, no good for someone with multiple disc issues. The only logical place for me to get any relief is the ER but I actually have a checklist now that I use to decide when and if to go. I was worried about being labeled a pill seeker. Not anymore. Especially after one doctor told me you are already stigmatized by your diagnosis. Let that sink in folks.

    I am honest with every doctor, every nurse, every paramedic I talk to each time I go. I used towalk with my to date over 500 page medical record just in case someone tries to talk slick. I am not afraid to call for the patient advocate, the nurse manager, the reps from the grant program, the attending in the ER…if I walk through that door it’s because I couldn’t manage it anymore on my own. I’ve taught my adult children how to advocate for me if I can’t. now I no longer have to “prove” anything. I firmly “recommend” that the doctor review my records and most time they will skip straight to morphine to bring my pain down. But that took almost 2 years of advocating for me and dealing with one doctor who will hopefully never treat someone the way he attempted to treat me.

    Living every day at at least a 7-8 on the BS pain scale has NOT been easy. There are days when I just sit here with tears rolling down my face. I am asked constantly how I get up every day. Honestly I don’t know. Do I have a high pain tolerance? Maybe. 5 kids with little to no pain meds, all of them natural births. But that wasn’t a choice, it was more circumstance (bad veins, no IVs, born in the car, bad discs so epidural was ineffective). With all of that written, I HURT EVERY DAY OF THE WEEK. I have thought about becoming despondent, losing the will to fight anymore, just giving up on everything. Somehow these 5 faces (21,18,14,12,5) remind me that all of this is but a part of this journey. I’m not religious but I have faith, and I know that there is a purpose to my life. When others have transitioned, I lived…and that keeps me on this path, gives me purpose. Thanks for reading.

    Liked by 1 person

  25. Zyp Czyk says :

    I not only agree with your advice to avoid the ER if at all possible, but have almost an instinct for this. Even half unconscious from a concussion and with several broken bones, I knew better than to go to the ER with my background of chronic pain and opioids. My concern was that because I was in very poor mental condition, they would insist I stop taking opioids for my chronic pain because they would suspect these meds might have a mental effect as well.

    I was so afraid of having my meds taken away that I waited for 3 days zonked out on the couch and in pain so I could go to the Urgent Care clinic associated with my PCP’s group where my doctor would be available to answer questions and they had all my records. This is exactly the advice you give!

    Totally by coincidence, shortly afterward I was interviewed by Maia Szalavitz for her article in Vice.com and she used my story as an example of How the War on Drugs Is Hurting Chronic Pain Patients:

    http://www.vice.com/read/how-the-war-on-drugs-is-hurting-chronic-pain-patients-716

    Liked by 1 person

  26. PJ says :

    One thing I like about Sutter Hospital is that they have all your medications, doctors names and numbers, all your illnesses and injuries – even your mammograms right there in the computer (as long as you go to Sutter doctors – which I do). They know all my problems already, so it makes it easy. I’ve only had to go there once, and it was because I tried to slice off a finger. Almost made it, too! 🙂

    Like

  27. Laura says :

    I’m so happy I have came across this!!!!!! Good to know. I was diagnosed with endometriosis about a year ago…. I have been dealing with this pain for over 8 years and it’s becoming worse each day. I knew all along that it was endo but not a doctor that I went to would listen to me. I finally found one that found out what is wrong. There are so many overdoses in the Boston area that a lot of doctors don’t like prescribing pain medication. I can’t take strong medications they make me sick so I have been taking tramadol. The quantity I get is too low though… and ibuprofen really doesn’t help one bit along with Tylenol or naproxen so I don’t know what to do anymore. I have been to the ER so many times because I don’t know what else to do and each time they act like I’m making it up or are just rude to me. God help us

    Liked by 1 person

    • Paula Banks Kramer says :

      Just wait until your own family starts to treat you like the ER staff does and begins to believe the same crap the ER doc and nurses hand out… so what do you do then…you don’t even want to stay/come back home. There has to be an answer, but until they have had to deal with the pain for awhile, they don’t have a clue what they are saying or doing, a
      and that their words and actions hurt just as much as the pain you are trying to deal with in the first place.
      .

      Liked by 1 person

  28. Stacy Lynn says :

    Coming across this during an extremely long pain filled night. I can’t think of anything more to say right now other than thank you for such a perfect article.

    Liked by 1 person

  29. MP says :

    Our hospital ER is so indifferent to pain they left me vomiting with a bowel obstruction for 15 hours! I can see it now-going to that hell hole with a fibromyalgia flare. ( I am disabled from a car accident where I broke my back as well and developed scoliosis in my lower back where I dislocated my hip and it wasn’t treated properly. I developed fibromyalgia after that.) I was once told by a very nasty doctor that I had a “very low pain tolerance.” My husband told him he could slam him in the back with a sledge hammer and bash the hell out of both his feet and see how high his pain tolerance was. I thought there was going to be a security issue. When I was a nurse I wasn’t so indifferent to someone elses pain because I know what pain is, and I don’t like to see people suffering. But then, ah, I thought that was what nurses were supposed to believe in!

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      Messages like yours are so heart-rending. You were a nurse!!! Why can’t they see that you are exactly the kind of person they should be helping first? I don’t understand our system, I just don’t. A bowel obstruction is EXTREMELY painful, most people I know who have them frequently get morphine within an hour of pain onset, and have it in their files what is needed in case of it happening. I just can’t imagine the absolute terror you went through for 15 hours. I wish I could give you a hug, your comment really reveals so much of what it means to be a Person in Pain, and the level of emotional despair caused by the inhumane treatment of our various debilitating, life up-ending, completely REAL but also, yes, invisible, conditions when we are dismissed and judged by those whose primary objective should be to HELP us function and live real lives. Instead there is a lot of fear surrounding appropriate titration (or administration period) of opiates and opioids. They throw antidepressants at it, they throw gabapentin, lyrica, anticonvulsants, and anti-anxiety meds at the pain, all of which are addictive and difficult to get off of and tolerated by only part of the population when you get into genetic/metabolic factors via pharmacogenetics. I’ve been prescribed more than a dozen antidepressants, not a one of which I could tolerate, and they have been from the Tricyclic, SSRI, and SNRI categories, all to no avail, only to find out I do not have the ability to utilize serotonin in my brain like normal people, and am the kind of person where a subtherapeutic dose is often more than enough to experience both relief, or in my case, lots and lots of different side effects with no relief. If they get desperate, they prescribe tramadol, which is dangerous to a larger chunk of the population than most opioids and doesn’t work at all in others as it is a prodrug which needs to be metabolized into its active constituents and not all people have that ability, and muscle relaxers are another last line of defense that I have cycled through all my options on. I am a hyperinducer of my current muscle relaxer, Tizanidine, meaning I would need larger-than-safe dosages to get relief, and also meaning that it wears off very quickly. Cymbalta, the SNRI I tried, is also one I hyperinduce on one pathway and am unable to metabolize on another pathway. Caused havoc throughout my body as I was told to go up to the largest dose very fast. By day five, not even at the target dose quite, I started bleeding and couldn’t stop for ten days, and it was shocking to me because I had literally had my period end as I was starting the Cymbalta, so I had five days between that and the uncontrolled bleeding. I didn’t even bother to go to the ER for that or literally anything else since, including a really nasty concussion resulting in an unknown amount of unconsciousness, two lovely black eyes, bone bruises on my orbital and my ribs, a slightly broken bridge of my nose so it kinda shifts around on its own now, and vision changes. I went two weeks later to my primary care and was diagnosed with post concussive syndrome and lectured about using the ER when I fall, am unconscious, and hit my face. I didn’t go because I didn’t think there was anything they could do, it didn’t hurt very much compared to my everyday pain levels and I wasn’t thinking very clearly. The part I try to emphasize to doctors who look at me all weird about that one, is that IT DID NOT HURT AS MUCH AS A NORMAL DAY does. I wasn’t sitting there thinking about my black eyes and my nose all day, or even my hematoma on my ribs but maybe twice a day it would remind me of its presence, but for the most part my everyday pain levels caused by spinal defects and degeneration as well as fibromyalgia, chronic fatigue, and suspected EDS or at least JHS on the severe side. Landing on my face and getting a severe concussion with bone bruises was a minor pain compared to the things I go through on a regular basis and am too scared to get help for, because of so, so many stories like yours, which I am so sad for, and because of my own history with the ER, too. I’m glad that you can live with yourself every day, happy in the knowledge that you were one of the good nurses, the kind who cared about easing suffering, who saw human lives and needs, not numbers and rules/regulations, when you looked at your patients. And I am also very glad that your hubby is so protective and understanding of you, and willing to back you up when you say you are in unbearable levels of pain. That’s really important to getting proper treatment, having a second person in the room who believes you and advocates for you, but that usually goes smoother, as long as no physical intimidation happens, lol, as cute as it is that he wanted to make that damn doctor understand. That doctor…. like so many I have seen, those are the fools that get rewarded for their “conservative use of opiates” and “reduction in pain for a high percentage of patients” which is judged by no repeat visits, but we get good at moving on when we realize doctors are complete assholes. While they are content to let people suffer horribly, lose function, income, and relationships, as well as hopes and dreams, so that they escape the overzealous eyes of the DEA. Those are the kind of doctors that we all encounter most of the time. There for the money, staying for the money, not too interested in the fate of their patients because that would be exhausting and require sleepless nights of guilt. I’m simply not impressed with this climate of fear, misrepresentation, and dehumanization of pain patients. It’s ripped my life apart at the seams and every passing year without relief that is anywhere near adequate is making it that much harder to function just to take care of myself and that much more impossible to “recover” or get to remission or whatever my doctors expect me to do with my magic wand that they must think I have. I personally know what having an untreated dislocated hip is like, as both mine were dislocated at birth and other than reduction, they were never treated correctly against future problems. I frequently dislocated/subluxed and do on many other joints now as well. I’m so sorry you suffered that trauma and no one recognized it or treated it, and I wish your story was an isolated one, but it is not. At least we aren’t alone. Sending love. Hope you have a low pain day, dear. Thank you for adding to the conversation in such an honest way! ❤

      Like

      • MP says :

        Thank you so much for your kind words! Sometimes that helps more than anything.
        I hate to hear your struggle with the Cymbalta. On top of that last episode witht he bowel obstruction, I too was on that and when I had to have a nasogastric tube, I was off it cold turkey for five days. I went into withdrawals and nearly kicked my bed apart. I felt like I couldn’t breathe, I had horrible, horrible nightmares. I left the hospital AMA the next morning, got back onto the Cymbalta, and then weaned myself off like I was supposed to do, never to touch it again!
        Those antidepressants they throw out there haven’t been tested long-term, therefore I’m afraid of them. You see a new drug and everybody wants it and then you see all the commercials for the lawsuits! My husband has arthritis and scoliosis and they threw that gabapentin at him and some very dangerous nsaid that pickles your liver, and decreased his pain medication.
        I’ve known people to be on opioid pain medications for years and years and lived to their eighties and up to a hundred without problems. They had a better quality of life. I say if a medication works, and the patient isn’t abusing it, what is the big deal?
        I do like the Tramadol, and take it with Tylenol Arthritis strength (650 mg, two every eight hours) and most of the time it will hold through the night. That’s a good medication as long as you don’t abuse it, because Tylenol can be extremely dangerous if you use too much too often.
        Thanks again for your kind words, and hugs and prayers for a blessed day to you.

        Like

  30. Laural says :

    Wow! Can relate so deeply with this post. Have EDS, MCAS, Likely Tethered cord, possible Chiari (currently being tested for both), CCI, IBS, TMJD, Pelvic congestion, PCOS, Trigeminal and occipital Neuralgia Type 1 and 2 of TN, prolapses, All sorts of pelvic pain conditions and on and on as EDS likes to do. Avoid ER like the plague cause totally worthless for our conditions. After not going for many years was forced to by PCP as fastest way to get an Ultrasound of abdomen when I had a hernia (but he thought maybe gallbladder issue at time) and get medicaid to cover it without a preauthorization. I was in such agony I was vomiting from the pain cause of it’s location (though TN is far worse). Turns out hernia was pushing up on stomach hence vomit and sudden GERD and then relocated on its own over next couple weeks cause medical care was so slow to get once gall stones were ruled out. They asked if i wanted pain meds and I said yes. I also told them I was severely malnourished and dehydrated from bad TN. All neighboring patients got pain meds and nutrient IVs including other patient who really had gall stones but he got meds before his US confirmed it. But not me, nope, no meds. I informed them of my corn derivative allergy and medication sensitivity which they went on to say they have no meds safe for me nor would they be able to get me some. What if I was needing emergency surgery from car wreck or whatever?!!? really freaked me out how they said since I have MCAS I have to stay dehydrated depleted and in immense pain from hernia and TN. The ER is NOT prepared for MCAS, TN/ON, EDS or POTS. Heck I had bad TN/CCI attack while getting lumbar MRI and it totally freaked the techs/nurses out. They were so worried but could only offer hot pack and wheelchair. I use medical cannabis and just started a few days ago LDN plus other supplements and herbal medicines like turmeric only. Have been prescribed seizure meds and opiates but never tried most of them because insurance refuses to pay for them to be compounded without corn allergen. The few opiates or milder script pain meds I’ve tried had bad side effects and no pain reduction for me so not really motivated to try others. But sometimes I wish they could knock me unconscious during bad attacks. Neurosurgeon said that is only thing an ER really can do for someone like me but unlikely to convince them to.

    Liked by 1 person

  31. mini2z says :

    Reblogged this on mini2z and commented:
    Going to the ER for your Invisible Illness?
    Check out the blog

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  32. Kelli Ellis says :

    Last time I had a doctor refuse to treat me & send me on my way out of the ER, I gave the hospital’s VP of Accute & Non-accute care a call. I ended up in a meeting with the VP, the ER head, and the Director of Accute care. My visit prompted several changes in the ER department’s policy in reference to chronic pain patients and how to treat them, not just as patients, but people. I have since returned to that ER and avoid seeing the doc who refused to treat me. But I am always now treated with respect, and while I don’t ask for, nor expect any narcotics, the doctors are open to other avenues or treatment, some even making suggestions.
    I also do have the list of meds, as well as medical conditions & other pertinent info whenever I go to the ER or see a new doc.. The only info missing from my list is a patient ID number.

    Liked by 1 person

  33. Cynthia says :

    I am having a hard time getting any pain meds for breakthrough pain. I currently take Lyrica 100mg 3x’s a day, Tizanidine 4mg 2x’s a day and Duloxetine 60mg 1x a day. You would think that would be enough but I do have alot of breakthrough pain and the nurse practitioner must not think I need anything to help me bc she says well maybe you should take supplements. I do & I do fine. I’m not you I tell her. What am I to do?

    Like

  34. VEDShottie says :

    I have vascular EDS and a host of other issues that are common for EDS like degeberative disc, slipping rib syndrome, snapping shoulders, dislocating kneecaps, hips and shoulders as well as intestinal prolapse and rupture, PCOS and chronic fatigue. I have problems with my bladder & kidneys- intersticial cystitis, chronic infection and low function results from pain levels being too high. I also have vocal chord dysfunction and pulmonary problems- looks like severe asthma but isn’t. The bronchial tubes collapse under too much strain (like pain!) and I end up admitted for days bc I cannot breathe. I am also usually Peeing blood. The ER doesn’t do pain management for me anymore and I do not ask bc the one time I insisted I was sent home only to be admitted to a different hospital the next day with cysts on both kidneys caused by infection.

    I have been sent home on 3 different occasions with a doctor telling me there is nothing wrong… And if I wasn’t careful I would not be able to come to the ER at all anymore. On each of the occasions I was sent home with no antibiotic, after having no fluids run, and certainly no additional pain control I was back via 911 ambulance ride in acute respiratory FAILURE because I developed SEPSIS. 3 freaking times!!! I also had a resistant version of e.coli last year that caused infectious disease to put a central line in and I had to learn to give myself IV antibiotics at home…. Every night for 14 weeks. They hate seeing me walk in the door bc the 3 times I almost died from septic shock it was because they refused to help me… So now they at least make sure I am breathing alright and they run some fluids.

    I don’t get sent home now either because it is just part of my care protocol that I’m hospialized once every 3 weeks for about 6 days to get my vitamins and electrolytes where they should be, deal with the infection that is always present and do breathing treatments. I am in ICU immediately if there’s blood in my urine- which is about half the time. The only time I get pain management above what I have at home for day to day is when I’m in ICU.

    Appallingly, even though it is clear I have never been to the ER for “just” pain, I am treated like a drug seeker. Pain does cause the respiratory distress and I believe allows my fragile immune system to knuckle under to the lurking bladder and kidney infection… So I actually am there for pain management but it is so I can breathe and stop peeing blood. Avoid septic shock (that sucks worse than anything I’ve ever dealt with!). But whether the pain causes these issues or the emergency issues cause more pain- who knows? I do believe severe pain is a legit emergency for chronic pain suffers but the doctors do not. However, respiratory and renal distress are both absolutely emergency issues and yet… They don’t give me pain medicine that has been shown to help the whole body crash situation out of imminently critical and into stable for admission much faster. The last time I was there the doc looked me in the eye and said the only reason I wasn’t fornally flagged and refused treatment is bc I could go critical with the other concerns… Well, yes! I mean… What is possibly sane about treating a chronic pain patient as a drug seeker in the ER when he can SEE what is happening to my body… And then upon admission the hospitalist informs me there will be no IV meds (to her shock I said that was totally fine) and that I could have the meds I am Rx’d at home but nothing more- even though I clearly am in major health crisis for a “normal” person….

    After the last time, when I was discharged after several days with NOTHING to take home- not antibiotic, not inhaler, not a follow up scheduled and no answer about what I should do about the fact that I was still so weak I couldn’t walk to the bathroom myself and my bladder let go if I tried to walk across the room. I didn’t need narcotics to go home… I needed help to follow through with this. I have been so scarred not just by the ER but hospitalists too that I will not go even at death’s door.

    3 days ago my lungs were struggling, I peed blood with so much pain that I screamed in the bathroom, I was incontinent and then I got confused and passed out for idk how long. I couldn’t get off the floor bc my hip was dislocated but I was so out of my head that i couldn’t figure out why I kept falling down. My pain was so bad I went from sobbing to unable to speak and my eyes wouldn’t focus. I sweat through several shirts and all my blankets…. My words were slurred. My boyfriend and friends begged me to go in but I said I wasn’t in bad enough shape for them to have to treat me and as a chronic pain/EDS patient they would let me die like a dog on the floor.

    What the doc who I seem to get every damn time I am in there (and i do have a pcp and several specialists… I’m just really freaking sick) Is that if I am in his ER, I am actually better than I was at home bc when it is really bad my sick and pained mind is utterly convinced that the ER/hospital is the worst place I can go.,, they won’t give me the inadequate meds that I do have and they don’t help me. I think this last time I refused to go I came very close to dying… All because of how I am treated as a chronic pain patient.
    I am disabled from EDS… And that my son sees me in the hospital over 25% of the time, my boyfriend had gotten used to snuggling me in the Hospital bed while I cry and I have lost so many friends bc I’m isolated . It sounds me deeply that I do not matter at all to the medical people other than as someone who should he dumped like garbage on the side of the road and allowed to die. Bc my pain makes me less than worthless.

    Like

    • Debbie Rosen Arky says :

      Unfortunately the ER staff are so used to alcoholics & drug addicts coming into the ER, they have become immune to real people, like us, in need of help. They need to be educated about painful illnesses you can’t see, like Fibromyalgia. My daughter is a Nurse Practitioner in an ER & I can’t talk to her about my disease, she seems to not want to know. She lives on the East Coast, and I live on the West Coast. I also have 3 sons. They don’t want to know either. By time I started having them, I already had 2 L/S fusions & a Laminectomy. I started at age 23 then 24. I never complained about pain when they were growing up. When my daughter graduated high school I went in for another fusion. I got a severe infection & ended up with 7 surgeries in 4 was & a 6wk hospital stay. I stayed with my Mom, as my doctor did not want me going back to my house. My marriage was done, in my eyes & the hospital stay & my husband stopped working, using me as an excuse was the last straw. I filed for divorce. I’m sure I had Fibro many years before I was diagnosed in 2008. I even asked my Spine Surgeon around 1999 if he thought I might have Fibromyalgia & he said, but I “Probably”. I didn’t go any further, because I didn’t want to have it. Besides, in January 2000, I was started on a regimen of Neurontin 600mg 4x/d & Tramadol 4x/d to keep my pain level even. Each time I had surgery Vicodin was added when I went home for stronger pain. In 2004 I went in for another fusion, my BP dropped so low during surgery they had to hurry up and get out. They planned on going back in to fix something in a few days, but when the vascular doctor opened me up, he said I already had adhesions & if they went any further I would have bled out, so he closed me up & they had to abort the surgery. Luckily for me the fusion was perfect. My doctor was a perfectionist. I was in there for 3 wks. I had one more L/S fusion in between 2 C/S fusions. Even though I have DDD, I’m done with my spine. I like being able to turn my head back & forth. A year ago next month I decided to get off of Opioids & Tramadol due to the DEA crack down on prescriptions. I had trouble with the a new Pain Management Doctor, mine for the previous 12yrs was fading out his practice. I also had a run in with a staff in my Internist office regarding whether or not he was I left a message canceling my appointment. I went to a meeting with new doctor, who turned out to be a Nurse Practioner. Since my daughter is an NP, I kept the appointment. I really liked her until it came time for refills. She would not refill opioids. I had to find a Pain Management Doctor. This was not as easy as I thought. After 3 tries & desperate for pain medication, I was almost out of Neurontin, I went back to the Pain Management Doctor I had the problem with & face it head on. We talked about it & we’ve been great since, except for he will only give me 10 Tramadol a month. When I see him next, I will discuss it with him, because I realize I’m home bound without pain pill. I tolerate it at home on my hydocolator on my back & an ice pack on my neck. I’ve been put off a knee replacement for many years. I’m bone on bone. Before I went to visit my daughter & grandson I decided I was ready to do it, so I made an appointment went to see my doctor & as he was walking out, I told him I needed a referral for a hip doctor. He reminded me that he does hips. I told him I was having a lot of groin pain on the left side & the hip locks painfully at times. After x-rays, he showed me my hip has no space between the Arthritis and the socket. I’m now scheduled for a hip replacement before the right knee replacement, because the knee takes longer to heal than the hip. I’ll be part bionic woman when this is over. Although my other hip & knee will probably have to be done too at some point. My daughter has a row house with a finished basement, so I sleep upstairs, but my grandson’s playroom is in the basement. It has a room off of it with room for a bathroom, so just putting in a bathroom will really increase the value of her home by a lot. I would like a banister on the stairs going up front the basement to the kitchen & living room.
      Well, I’ve now finished my novel. Lol Look at life with the glass half full. There’s always someone in more pain than we are. I wish there wasn’t. Take care! ❤

      Like

  35. Kelly says :

    Hi

    I know your plight only too well these last months. Accident and Emergency in the UK is just as unforgiving with chronic pain.
    I suffer with fibromyalgia, which until recently I was able to manage with. Last September I was also diagnosed with a large Uterine Fibroid and this April I had an Embolisation to shrink the fibroid. I have had nothing but problems ever since. It caused a fibroid flare up and I was taken into hospital. After a scan I was told the Embolisation had failed. I couldn’t believe it, all this pain again and for nothing.
    I have been to A and E in severe pain several times. Begging for them to help me. All they do is ply me with opiates which block me up causing large hemmerhoids and sending home. One of the visits I was told by a nurse that this is a chronic condition and don’t darken the doors again. My GP has washed her hands of me and said she has done all she can do. The fibroid is now believed to be pressing on a nerve in my spine.

    I have a hysterectomy booked in December through my own insurance. Do not believe the hype that the NHS is all its said to be. It tries to get you out the door as quick as possible. I too worked as a nurse and I ashamed by how people in pain are treated. At one point and a long struggle I had to admit I was near suicidal and I was told to go home.

    Luckily I have a wonderful husband who looks after me. A boss who is going out his way to accommodate me. I just hope this operation gives me some relief and dosnt cause my flare up to get worse.

    If it gets worse I do not know where to turn. My husband feels helpless and he can’t do anything but watch me cry and beg.

    Thank you Jessi. This page has certainly made me feel less isolated. I only hope that we can all find some relief from whomever or however we can.

    Big hugs to us all

    Like

  36. Kelly says :

    Hi Jessi

    Your web page is inspirational. It helps so much to have people understand the pain I am in. I have fibromyalgia and a large Uterine Fibroid as well as IBS and hemmerhoids.
    My recent flare up started some months back after I had an Embolisation to shrink the fibroid. It failed.
    Now I am in debilitating pain. I have been to my local Emergency room around a dozen times. I have been admitted three times and turned away several more.
    They know they messed me up with the Embolisation as I had my fibromyalgia under control before then.
    I have now gone private through my works insurance and having a hysterectomy in December.As much as my husband has been my rock I know it’s hard for him to relate to the pain I have. My GP seems to have washed their hands of me. People rave about the NHS here in the UK. It’s Free!!. Remember no I have worked since the age o f 16. I have paid into my National Insurance which pays for the NHS. Yet when I ask for help I am told by one nurse in particular to stop bothering them and it is a matter if my GP as it’s an on going issue. However when I see my GP she says she has done all she can and to go to Emergency room if the pain worsens.
    All they do in the hospital is pump me full of drugs and make me constipated and then send me home full up of laxatives. I then have stomach cramps and diarrhoea, agonising pain from the hemmerhoids. After a few days I can’t take the pain any longer and go to Emergency room and the vicious cycle begins again.
    So now I choose not to go there, even if I’m really bad. Last time I was in a woman in the bed next to me with whom I got on really well. She told me that she had been to the Emergency room several times. When she was admitted they told her her appendix was slightly inflamed but she would have to go home and wait for the letter to come back for surgery.
    As we took a little walk around the hospital she nearly fainted. I told the nurse on the ward about her condition and she just shrugged. I told her it was madness. Why not do the operation now. She is already taking up a bdd. She could see the theatre from her bed for Christ sake! No they have to follow procedure and off she was sent.
    Then it was my turn. Doctor said to me that I should go home as there is nothing they were doing for me there I couldn’t do at home. Er…. yes a hysterectomy!!. Oh no I don’t qualify to being bumped up the list as I wasn’t bad enough. Never mind the fact the caused the mess I’m in.

    So now I just sit at home and try to manage the pain. The hemmerhoids and buttock/hip pain is the worst. It hurts to sit and lie down, so God knows how I am supposed to rest. I work for the Post Office who have been fantastic about the time off I have had.
    Sorry that’s been really long but I guess I needed to air. Like many of us I grieve for the person I once was. My only hope is that this operation brings me some relief.

    Good luck to us all and especially you Jessi. Your words move me and help me not to let this pain define me.

    Like

  37. Shawna718 says :

    Reblogged this on Wishes On Whiskers.

    Liked by 1 person

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