Chronically Struggling: Do I Go to The ER?

Chronically Struggling: Do I Go to The ER?

By Liza Zoellick.

This past weekend was better than it has been in my southern part of the world. We made it through the fierce, cold-snap that seemed to grip much of the country and though rainy and grey, the temperature was far more pleasant than it has been. I really, really wanted to enjoy the weekend and while I had no imperative plans, it was just the idea of maybe getting out and doing something outside of the house. Even as an admitted recluse, truly enjoying most things home-centric, I enjoy getting out once in awhile. But not this weekend. No, it was not to be.

Perhaps I had made the mistake of doing too much. I’ve been on quite the roll tidying things up, straightening from the holidays and getting back to normal. I knew I over did it, but I did not expect the migraine to roll in late, Thursday night and never leave. Even now, as I type this on a Tuesday, my head still aches. But this past weekend, along with the general horror of a migraine, every part of me hurt. I felt the flare coming on almost simultaneous to the migraine and really knew that it was going to be hell. I brought my arsenal out for when flare’s hit: the heating pad (which really I use all the time now), ice packs and soda, because sometimes that helps with a migraine as it has caffeine, and my music therapy play list that I turn on when it gets really bad, to focus on lyrics and music to keep my mind off pain. This is how I spent my weekend.

Liza Zoellick

Why am I sharing this? Because like most of you can relate to the struggle of flares and migraine, or maybe getting sick on top of being chronically ill which, always seems to make it doubly worse, I am certain if not all, that some of you have struggled with making a decision to go to the ER. This weekend as I laid in bed feeling my utter worst and crying through most of it, I had the (dis)pleasure of debating the pros and cons of going to the ER. Let me explain a little of how this went for me:

To go or not to go to the ER, that is the question. Unlike Hamlet, however, there was no eloquent augment and there was no deeper understanding of my psyche. All there was, was frustration and annoyance because time after time I failed to convince myself to go to the ER.

The first argument: I feel absolutely horrible. This isn’t the horrible that I think I can trudge through or listen to enough music where I can distract myself, or even Netflix myself into a coma. No, I hurt. My brain feels like it going to explode. I need to go to the ER.

The counter argument: The insurance plan I am lucky enough to have, because I know many who have chronic illness who do not have health insurance, requires me to meet the deductible at the beginning of the year. That amounts to $400, plus the ER visit which is $150. To clarify something here, I typically have this argument even when it’s just the $150, but that is difficult enough to justify going to the ER. I freak out paying $60 for sneakers because we are a one income family and I thrift and coupon our way to savings to be able to get what we need and what our kids need. So yeah, it is not easy for me to hop in the car and go to the ER. Let’s just cut to the chase and say that as soon as the amount entered my brain, I shut down all possible ER options. I tried a hot bath, tea and meditation. Still, there is always a second argument.

The second argument: I can’t do this. I need to go. My body is on fire, muscles screaming, my joints feel like they should be bleeding. This is no joke, I am in alarm mode and I need to go the ER. I am typically a very good girl. I think I might go once a year to the ER. (After I’ve met the deductible. heh)

The counter argument: Alright, go to the ER. And then you have to say why you are there. Just a migraine? No, not just a migraine, but fibromyalgia flare and RA flare and they are going to look at you, smirk and conclude you are druggy. Why? Because it’s happened before. Yes, boys and girls…this is the naked truth to chronic pain/illness. Where you go to the ER to be pain shamed and made to feel like instead of being at the ER you are on the street corner trying to get some crack cocaine. Suffice it to say, another argument shot down.

In conclusion, all I can say is that the struggle is real. I understand how hard it is for all my spoonies out there. I get how very little support we get, and how much of a struggle it is to make the decision to go to the ER can be. I understand what it is like to talk ourselves out of it, to weigh the arguments and talk ourselves out of it. Most of all, I understand how it is to be shamed in the ER or at a doctor, where they think you are only there to get pain meds. It’s honestly laughable, because I am very certain that if there were a magic pill to cure us without it being a narcotic, that every last one of us would jump at the chance. It’s not about the drugs. It’s about feeling normal again.

Liza Zoellick lives in Houston and is a frequent contributor to the National Pain Report. She is a delegate of the International Pain Foundation. You can follow her writing lovekarmafood.com and follow her on Twitter @fibrohippiechic

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Authored by: Liza Zoellick

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30 Comments on "Chronically Struggling: Do I Go to The ER?"

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Sarah,
Why do they always think “it is a female” thing?

I have suffered from chronic back pain my whole life. I also get terrible migraines once or twice a month, the kind that cause me to darken my bedroom, put earplugs in, cover my eyes with a mask, and lie as still as possible. For days I am holed up like this, afraid to move, unable to eat. The migraines feel like the right side of might head is exploding. I often wind up lying on the bathroom floor, vomiting until there is nothing left in my body but bile. Then I dry heave for hours, or sometimes for days. My headaches typically last 3 – 4 days, with very set patterns as to what happens on day 1, day 2, etc. About every 4 months, on day 2 or 3 of a horrible migraine, with no letup of the pain or nausea, and fearing I am having a stroke, I wrap towels around my head to keep out light and sound, lay on the seat of the car crying at every bump, and let many husband take made to the ER (which by the way has a co-pay of $350 each time). The reason for the trip to the ER is that sometimes, the ONLY thing that makes the worst headaches go away is a shot of a narcotic medicine along with an anti-nausea medication. I have not had any seriously negative reactions from medical personnel (except for routinely being placed at the end of the line to be treated and a few doctors rolling their eyes in frustration when their anti inflammatory pill didn’t work) until the last two times I went to the ER. In August of 2017 and December of 2017 the doctors refused to treat me with anything other than benadryl and an anti-nausea medicine. I laid there crying, begging for my normal rescue medication, but they refused. They said policies had changed and they could no longer use the medicine that has worked for me for the last two decades. (Also on the record, I do not ask for a pain med rx while I am at the ER. I am just wanting one shot to treat the migraine). After being at the ER most of the night with no pain relief, I was given a very small dose of morphine, which did not help. I felt ashamed and mortified, but also terrified at the realization that 3 times each year I would be screaming in pain for days with nothing and no one to help me. We left both times because it was obvious that they would offer no meaningful help. I should add that I have been to a headache clinic, and tried all of their “drug cocktails.” No other meds have worked, and I tried so many over the years, being so hopeful each time a new one was prescribed. I even had my ovaries removed when 2 doctors said doing that and then going on hormone replacement would level out… Read more »

I worked at a hospital for 25 years so I had it better than most. That’s not to say I wasnt treated like [edit] sometimes. I met a Dr H on one of my last visits. He was the nicest, compasionate, funny, non judgemental ER doc I ever met. I was able to honor him at the ER docs monthly meeting. I bought him some wine. I wrote a letter which public relations (this is done through PR throughout the hospital for doctors and nurses). PR didn’t want to read the whole thing. I said, you read it! I said how hurtful it was to come to the ER in light of the fact that I worked there and my pain started within the hospital walls (2botched surgeries).my letter said how I haven’t been treated so kindly over the years. I looked at every doc in the eyes who treated my like a drug seeker. It was pretty satisfying. I wish I could clone that doctor!!

This is a sad commentary on the US Health Care (?) system. Next time I hear we have the best health care in the world again, I will forward these emails (names excluded) to whatever politician or governing body is spewing this blatant untruth. This is sad. These people are in healing professions and need to be called out for this type of blatant discrimatory care. Hospitals have Patient Relations personal who are supposed to help patients who are having problems with their care. Contact these people, document how you were treated, get names and write to the President of the hospital, if you’re on Medicare report to them. We need to fight back. Stand up! After all we are paying for these services and as “consumers” have rights to be treated with dignity and respect.

After reading these horrible stories I won’t go unless I’m bleeding. I hear that I can have an advocate assigned to me by my insurance company and they go along to new doctors,first visits and ER, I’m thinking we all need someone to back us up.

I would not go again, I went because of a side effect to a pain med,I was told not to go to er because of pain. A doctor tried to steal my shirt. They moved me to another room, I looked in my clothes bag, the shirt was gone, it is my favorite shirt, a western type shirt with the pearl snaps. I yelled out. where is my shirt. They tried to say I must have left it in ambulance, I said, no, I wore it in here. About ten minutes later, I saw the Dr give it to somebody, they told me it was misplaced.
good article.

I can relate! In fact, I had a very similar weekend recently myself! It is sad that people judge others, especially over pain. Pain is a very personal experience, a person can only judge pain on their own experiences, so they can not perceive more pain than they have felt themselves! Fibromyalgia is a crazy “disease” I wouldn’t wish it on a “worst enemy”, I can’t imagine hating someone so much? But it is our reality, and we can not let what other people think, affect our thinking (the Fog does enough of that), so take strength in the fact that you are a WARRIOR, and only your fellow Warriors can understand, just how STRONG You are! God Bless❣️

No. Just don’t. I decided, against my better judgement and incredible anxiety to go yesterday and after wasting 9.5 hours of my time, I ended up at home weeping my eyes out because the thought of being re-inserted into the medical world is more than I can bear.

An aside: I do not think that anxiety and PTSD in relation to Doctors and being part of the medical system is addressed enough here.

In addition to chronic pain issues, I have a genuinely bad knee…and by that I mean, something Drs can look at w/ documented history of surgeries, MRIs, etc (as opposed to something they perceive as only in one’s head.) I have pulled back in recent years from the medical world because I found they contributed a great deal to my pain, distress and anxiety. I know I will eventually need a new knee, but as I found with just about everything else, a lot of my healing comes from within. I have focused my recent life on mitigating my pain and flare-ups. But this time my knee/leg became so bad I couldn’t even walk with my cane… and I thought, I better have this documented RIGHT NOW so we can see what’s going on and maybe this time resolve it!?! (and not keep making it worse.)

(Sometimes that spark of eternal optimism insists on popping it’s silly head up again!) Swallowing my intense distress and anxiety…and erroneously thinking that with my history they’d do an MRI or boot me upstairs to an Orthopedist…I went to the ER. Within 2 hrs they had x-rayed me (which never shows anything) and had scanned for a clot (if this pain were a blood clot, I’d have been dead years ago!) then they stuck me back in the waiting room for 7.5 hours with and overflow of coughing, spewing patients. To have me not even see a Dr but a PA who only guessed at my leg problem (wrong) and referred me to an Orthopedist who, by the time I get an appt will only GUESS at what’s causing my problem. (Jeez! I’ve been here before!) The entire episode was pointless and made me feel worse. Was I given any pain relief? Surprisingly yes (5 whole pills!) But seriously the pain is incidental to wanting to know what is causing my leg to collapse and fixing it!. Did I receive a splint that doesn’t fit correctly? Yes. Was I given paperwork on how to use an ice bag??? (THAT was so comical I asked if they were joking, right?)

The worst part is financial. Yet another stressor to lay on top of everything else. So. For me? I’m saying NO in the future.

@MichaelL You are very, very right! It is incredibly surprising to me that those in the medical community, who should be well versed on this issue have been sucked into twisted statistics. I have read the CDC report, and yes, their stats incorporate fentanyl and “other” opioid drugs more reflective of street drugs than what those of us in the chronic community take on regular basis. It’s really up to us to voice our anger at being lumped into statistics not reflective of our community.

I too, hard to go to ER the other night. For 6 days thought I had the flu, day 4 was so-so, day 5 & 6 only got worse. I didn’t want to go, as I am a pain patient too.
Even at 50 yrs old, our mothers can make us do things we don’t want to do! Lol.
She came to pick me up so I went. From the time I got in to register, you could tell I was “listed as opiate user”, it was awful!! I had even fallen on some ice 3 days prior, but that’s not why I was there!!!

Turns out I had 101.6 temp! BP was off the charts and I had to ask 6 times for some antinauseua meds! By the time I got it, it was too late!!

The triage nurse never looked up from computer either, I was glad my mother was with me, as she couldn’t believe how awful I was treated! The different nurses that came into my room, I told each of them; I’m not here for pain!!!!

Even did a FLU test, if you have never had one, I highly DO NOT ever recommend tbis, as I practically pushed the nurse off me and across the room. This is so [edit] painful, its barbaric!! I did apologize of course, but it was awful& they do this to children??
Turns out I have bronchitis. Recd 3 meds, zpac, inhaler and some cough syrup w/ codeine- go figure, the Dr who was extremely nice, was the only one who didn’t care that I was a pain patient! I feel he just wanted to help me get better. But these nurses, c’mon! Not everyone is a drug seeker!!!!! If they had asked I would have showed them the brand new fentynal patch on my back!! No one asked!!! Or my breakthru meds I brought along in case I got admitted……
All you got a do is talk to patients, I know your jobs are difficult, but please don’t stereotype everyone!!!

Thank you for sharing your story.
The more we are unlike .. the more we are alike.
I also have a history of migraines. But sort of lucky for me, back in “the day” I was given home “remedies ” (opioid and Xanax for at home.)

Once, unfortunately I could not keep the meds down. I would take a pill and before I could finish swallowing it I spewed it into the sink.

I had a daughter at home. Single Mom. So deciding to go to the ER was tough for me too. But unable to keep medicine down left me no choice.

I got there all right but the doctor muttered “I don’t think we even give shots” and threw a couple of prescriptions at me.

I laid down on the exam table and burst out crying. A nurse came in and we talked.

“Ask for another doctor” she urged. “Why? They would just tell me the same thing.” Again she urged me. So I muttered: OK, get me a different doctor.

The new doctor came in and took my blood pressure and put a pill under my tongue. 200/100. The pill didn’t work. She gave me a shot for the pain and transferred me to ICU.

Sometimes I pine for the good old days.

I doubt they would get you a second doctor these days.

It is sad and unfair that it has come to this. Now I have Catapress for when my blood pressure spikes but I recently saw a new doctor in my new home town who declared she WOULD NOT prescribe Catapress because “It is not indicated.”

What has happened to compassionate dedicated doctors? This new mindset is really frightening. Do they want us to die?

I don’t know whether to feel comfort knowing people share the realms of chronic pain or feel heart break. I am a 53 yr old single woman, single mother of 30yrs, and a disabled veteran. My spine is failing me from top to bottom, may I say how is it my fault??, I also have chronic arthritis (RA) riddled throughout this body I never asked for. I moved from PA where I was blessed to have a magnificent pain clinic doctor who had me on opioids and I was LIVING! I’m now in the state of Missouri and honestly feel like I went to hell. No one, I mean no one, will continue any kind of pain management for me and since being here have gone through withdraw, alone, in this cold cold place. I had records sent here from PA and as soon as they saw opioid I became something else in there eyes. My dignity has been stripped, my pride stomped on. During the withdraw I got so sick I called an ambulance. I could barely walk but they didn’t seem to think i needed their help, umm I called you! …and so I walked myself down the snow covered steps into an awaiting ambulance where I was repeatedly reminded that there was nothing they could give me. I arrived at the ER to be put in a room shaking trembling, screaming help me please please …. So much time went by I couldn’t understand. The ER doctor, which he shouldn’t be titled, came to the door entrance. Told me straight away, there’s nothing this hospital is going to help you with, then came the comments, the insinuations, the looks, … Do you abuse your pills .. Where did you get these pills … He’s scolding me, telling me that letting the morphine out of my body is good. I never once asked for anything other than HELP ME AND THIS DEMON WITHDRAW IN MY BODY, IM SCARED. He said again, not once leaving the entrance to the room I was in, we’re not going to help you, that’s not what this hospital does. If you’re not going to cooperate and LEAVE we will call security. I took this in, his cruel behavior, the nurses readiness to agree with him … I felt deflated. I got up, walked towards him, a bit, ]pointed my finger and said, you are a worthless [edit] doctor. He walked away, the nurse stood there and said it’s time for you to leave, I said ma’am, I came in the ambulance and I don’t have a way home. Well she says, with all the ignorant arrogance in her voice, you should’ve thought about that before. If you can’t go to the only place you think should help you, Where do you go? What do you do when the DEMON of pain creeps on you extra hard at night and you’re struggling to even want to live. I, as an American citizen and a… Read more »

Going to the ER only gets me treated like a drug-seeking criminal when I’m legitimately seeking relief after weeks/months of torture. I dread the very real possibility of being marked with the scarlet letter of (INACCURATE) drug-seeking addict in my permanent medical records when all I was truly seeking was compassionate, empathetic treatment.

I feel your pain. I too go thru this every month. And last month I just couldn’t take it.
It saddens me to see so many hurting because of this ignorance from our society.
The problem is not us chronic pain patients. I just experienced two friends who have sons die within one month apart this month. Both died from over dose. Ages 18 and 21. Both who did not suffer from pain. Their families had no idea they were taking drugs. These are the people who are dying. And it’s very heartbreaking. So I do understand the urgency to help the opioid epedemic. But stop harassing us chronic pain patient.
Also Debbie above. My sister law-in-law just started her Botox for her migraines and they are helping her. She stopped all medication and only does Botox. So you might want to give it a try. It won’t work for me because I have Fibromyalgia and other conditions that are unbearable. I wish you all luck. Let’s stick together and try to move ahead when we have good days.

I have never been to the ER for chronic pain and I pray that I never have to go. I feel fortunate. Frankly, I would have the same fear so by the time I would actually show up at an ER, my situation would be truly beyond my tolerance. Truly. And I’d be terrified that I’d be turned away. Right now, I’m dealing with a situation where doctors are not listening to me. I took a test for asthma, I think I mixed up my pills and mistakenly took my antihistimine because I made a similar mistake related to a medication that looked similar (I took two Simvastatins and thought I was taking a Simvastatin and an Allegra- they look alike!). In any event, I tested negative for asthma. They will not retest me. My self-reports of symptoms AND my medical history mean NOTHING to them. They count trips to the ER as part of their diagnosis criteria and I avoid the ER (at times when I realized later I’d been absolutely foolish). I’m $24,000 in debt, with lots of medical expenses to blame. I’ve had high deductibles. I have a nebulizer at home, which is the main treatment I’d receive at the ER anyhow… and for many years, I got prednisone off my asthma doctor or primary care doctor (which is the OTHER treatment I’d get at the ER — and I have no fondness for adrenaline shots in personal regions. I don’t know HOW they manage to hurt that much! Usually prednisone does the trick). PLUS, the last time I had to go the ER for breathing was when I had the flu on top of my asthma… and I very nearly passed out in the waiting area and ended up embarrassing myself at the front desk because I was so desperate for help before I wasn’t going to be able to… well, stay conscious. (I know my limits and when I am so close to losing my ability to help myself, I get terrified!) So now, I have doctors telling me my asthma medicines won’t help me. They ran a test that now is in the entire hospital system’s records. I may need surgery this year because my MRI says my pituitary cyst has reoccurred (I had surgery for it when it was first discovered). The surgery would be at that hospital system where they tell me to stop using my inhalers… In fact, it’s in the same building where I see that doctor and where that practice is at. So, my fear is, I’ll have surgery and be denied my inhalers. I saw an allergist who says I have all the symptoms of allergic asthma but because of the hospital structure, I get referred back to the office that says I don’t have asthma. Top it off with the fact that I was out of town, had severe breathing issues due to an allergy exposure and when I called the pulmonologist’s office and was told not… Read more »

Thank you for your comments, and as always, reading my articles. It is really heart breaking that all of us have this collective experience. The ER is not ever something that I choose to visit without serious thought and yes, part of that reason is being labeled a drug seeker. I think this falsely named crisis has made it extraordinarily difficult for us and will continue to do so. My writing and sharing is an effort to both connect with the community I find myself a part of and to voice all these concerns and horrible experiences with others who might not know. Thank you for reading!

The bottom line is that everyone who suffers from a disease or condition causing chronic, unbearable pain is being treated like a liar and a second-class citizen. And it stinks! I would be happy to take a lie detector test at the ER if it would prove I was not a drug seeker! Do they really think someone who can hardly get out of bed and lives on a very small disability income would WANT to go to the ER! OF COURSE NOT! We reserve it for the times we are so desperate, we literally are ready to commit suicide. And the trip to the ER usually makes us feel even worse. There HAS to be a better way!!!

It is sad to see my “colleagues” reduced to such narrow minded views. I have come to the conclusion that most are not as well versed in medicine as they think they are. They have been pulled into the propaganda pushed by the news media, fueled by the same narrow minded physicians declaring there is an “opiod epidemic”. It is more properly called a Fentanyl epidemic, with a clandestinely, and illegally, produced drug! The ER doctors don’t appear very bright, after all! Their uneducated, biased lives disgust me!

Just say NO.
8 hours later
You still feel terrible
And
They have been abusive.
I very rarely hear patients say
They were glad they went.
This from a 35-year ER doc.

I hear every word. During my last trip to the ER, an orderly told me to (direct quote): “Stop yelling and be quiet — people are trying to sleep!” The next morning, surgeons took out my inflamed gall bladder.
I now have a physician-signed Do Not Resuscitate order in my file and a DNR bracelet on my wrist. Plus, I have left instructions with family, friends and neighbors to NEVER be taken to that hospital again. I’d prefer to die in the road before being treated like a drug-seeker who can’t control her screaming.
The orderly was young and arrogant. He has a lifetime ahead of him to enjoy being a patient in pain and subject to the tender mercies of ER personnel.

It scares me am I to die in pain cause of my past pain issues?A year ago I had bladder surgery .Then a month later I couldn’t walk I appearently had nerve damage ba cause a disk ruptured in my spine which I have been recouvering from a year now .My pain dr decreased my pain meds which I’ve been on for twenty years ,I thought I was going to a”pain” dr for my pain? I got more pain. This is what scared me in sept I fell and broken my back because I was a chronic pain patient ,.I was not given anything for the pain also sent home ,how mean was that? I must’ve been super human they didn’t feel I needed anything shortly I developed a rotator cuff tear in my right arm they didn’t check me for any other injuries so here I had a rotator cuff injury and a broken back and my regional injury because I was on chronic pain medicine I was not given anything for the pain I was made just suffer and to this day I still suffer because I can’t have surgery on my shoulder till the end of January

People go to the ER with migraines all the time. Some people are regulars and they know them. So go. You have nothing to lose.
Also, we are in that time of year where seasonal depression disorder sets in. We feel as dead as lifeless as the trees and grass.
It is a bad time of year for everything except resting.
Take care.

I have gone to ER many times for the major migraines. Yes, they do judge you at the ER~I try to remember to say ‘no narcotics please’, b/c they do not help my migraines. They usually are kind and turn off the lights as I’m getting an IV to hydrate me. It is so sad when you’re waiting and judged like that. I wish you All Health & Happiness in 2018!

Laura P. Schulman, M.D.

As a former ER doc who is now disabled by painful chronic illness, I know both sides of this coin.

I’ve gone to the ER the morning after rupturing a disc in my neck while bending over everybody else’s sick babies all night, only to be told by the attending neurosurgeon to stop being such a baby myself and go back to work, because “it’s only pain.” In other words, it’s “just a sensation,” not a “real” problem.

And I’ve had the unpleasant duty of having to triage who is legitimately in pain with a migraine or other invisible painful illness, and who is for real a drug user who is jonesing. It always struck me as odd that even the jonesers are not treated as people who actually need help, but as nuisances who must be got rid of!

And people with painful yet invisible illnesses? They were seen by most of my colleagues as nuisances too, annoyances that distracted time and resources from those with heart attacks, appendicitis, car wrecks…you know, **real** emergencies. Pain by itself? “Not an emergency.”

The best part of all of this was when I returned to visit the university hospital where I trained, and made a discovery….you know that neurosurgeon who laughed at my pain? Turns out he himself ruptured a disc in his neck and was forced to quit surgery because he couldn’t stand the pain.

Every word you wrote here is spot on. I just went through this very same dialogue in my head about a month ago…almost word for word, thought for thought.

I would avoid the ER at all costs. With all the.opioid hysteria, it wouldnt take much for someone from the hospital to write “drug seeker” in your record. It is a sad fact that some medical staff are “wannabe” law enforcement officers and could cause you a great deal of grief. I would travel to the end of the world to find a Dr who can, and will, treat you. We treat our animals better than we treat people. It is NOT possible for every pain patient to be a drug addict and medical staff who are so judgemental and small minded should find a career that they are better suited for … such as a TSA Agent.

Liza, Thank you for your post and bringing to light the reality of going to the ER.
Its surely a disgusting crying shame! Im sorry for your heightened suffering, I too am just coming out of a very wicked ‘post holidays’ exacerbation.
I wish you great healing and ‘feel much better’ days ahead. Maureen

Normal. I don’t know what that is anymore, although my daughter & I talk about it all the time. My mother too, until dementia robbed her of her ability to communicate. We all want to just feel normal again. When you have a chronic illness, normalcy becomes the prize you strive for, the happy ending you wish for, the recurring dream you have every night after living the nightmare that is your life. So when you’re in the throes of a fibromyalgia/chronic fatigue flare up – when you’re in unbearable pain from migraine, arthritis, or any of the other “itises”, when you just feel horrible due to your chronic health issues, you just want to feel, to BE normal again.
As I read this article I was able to place myself in the picture. Those of us with chronic illness have this struggle often: should I stay or should I go. Stay home & make the best of my situation or go to a health professional & try to explain our illness. I too have been tagged as a “druggie” when I opted for the hospital with one horrible migraine. My file proved it wrong though, luckily. How many others haven’t been that lucky?
My daughter, mother & I all have fibromyalgia/cfs; migraines; osteoarthritis; thyroid disease; heart valve problems; and on & on, as most of the people who read this report do. There are millions of us now, as people live longer & the chemicals in our environment make us sicker & sicker. And we all just want to feel normal again.
My takeaway from reading this article was this: we have a justified fear of being profiled when asking for legitimate treatment, & we all long to just feel good again.
So all you chronic pain & illness sufferers, keep writing theses articles. Keep publishing blogs. Keep pushing for research. Share your stories on social media. We need to MAKE mainstream America aware of who we are, what we feel, & what we need. We need to make them stop ignoring us & making us feel less than human. None of us asked for ill health. We all deserve to get treated with dignity, respect & humanity, & be made “normal” again to the best of the ability of our health providers.

I’m a chronic migraine sufferer. I’ve had them since I was 16. I’m 63 years old now. CVS (chronic vomiting syndrome) comes with the headaches this time of year. I also had a knee replaced 2 years ago (from several bad falls), and orthopenia was diagnosed after a bone scan. My shoulders, back and hip give me so much pain. All the events I struggle through with the migraines and the chronic nausea results in being sedated to stop the vomiting. Now my Neurologists wants to stop all meds and give me Botox injections~but my other pain is real and I’m afraid of the shots. It’s a tough decision and I’m at the teetering stage in life of admitting to my age! Any comments on the Botox for migraines? Thank you and Bless you all for coming together with your stories.

Every time I am in this situation, I usually vote no. It’s because every single time that I’ve given in, I am treated so poorly that I can’t bear it. I had to go recently for left sided numbness and swelling, and was still treated like a druggy!! He said right off the bat that I wasn’t getting pain meds, even though I was numb and swollen, not in pain! He promptly called it a migraine (rarely get those anymore but he didn’t care) and gave me Haldol and Benadryl. After being knocked out for 6 hours, I woke up to neurology staring at me, swelling down, and feeling back. They promptly came in to discharge me and told me to see a neurologist to follow up. When I went to see my very trusted neurologist, he said it wasn’t a neuro issue and they basically drugged me up to shut me up. Mind blowing!! This is how those of us with chronic illnesses and pain are treated in ERs. Thank you for a great article, it’s nice to know that we aren’t alone, but this is a serious problem that needs to be addressed! That we all have this common experience is an issue. What would happen if something life-threatening was happening and they just blow us off because of our diagnoses? Scary…