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7/ 2/07 5:59pm

Hi Jenn,
Yes, bringing someone with you is definitely helpful.. I would really avoid going to the emergency room alone. This is also because if they need to do any tests or give you medications that might make you sleepy or out of it, they will want someone to accompany you home... and I don't know about you guys, but I always feel better when there is someone there to hold my hand if things get rough.
:)
stacy

Alex

7/ 2/07 10:37pm

Taking someone along isn't an option for everyone, unfortunately. I live alone, and my circle of friends isn't local. Not that I'd want most of them around for something like that anyway. I really wish every provider had access to shared electronic medical records.

My own belief is that the ERs are abused. I hear of people going to them for ear aches or mild flu symptoms, all kinds of things that just don't sound "emergency" to me. If you aren't headed there in an ambulance, I think you really need to consider if they are the right place to seek treatment. On the other hand, I do understand that on weekends or holidays or after hours, there's no other choice.

It's very unfortunate that most nonessential things in America are 24/7 while essential services, like primary care medicine, aren't. You can get a triple patty cheeseburger with bacon at 2am on a Sunday, but if you're having a serious but not necessarily urgent mecical problem, too bad. It makes me wonder about our priorities.

7/ 3/07 2:36pm

Hmm... No matter where you live in the U.S., Emergency Rooms are OVERWORKED and understaffed and, if you're adding to the problem, you've got little room to complain about them being so slow. Perhaps, rather than making plans to go to the e.r. so often, it would be best, especially for continuity of YOUR care, to see your OWN doc! I do know that hospitals keep track of what is called, "drug-seeking" behaviour...; for this reason, and many others, chronic pain patients really do not need to be treated there and it is a poor second to maintaining a good and regular doctor-patient relationship.

Now, I have told my pain doc (recently) that there ARE times that my meds do not work as well as I need or my pain simply breaks-though the medication. According to him and his staff, this should NOT be happening; after all, he IS my PAIN DOC and, if I am experiencing PAIN, I need to call or see him! He will, then, add meds or up my dosage. I joke that I sometimes have to get myself to the e.r. for a shot or two of morphine and, occasionally, I do. However, this does NOT happen often; not even once a year!

My suggestion, rather than worry about lugging around suitcases filled with charts, xrays, and scans, and forcing your friends or family out of bed to take you, yet again, to the hospital, is to be completely open and honest with your own doctor! There will come a time, otherwise, when the e.r. docs will NOT treat your pain..; certainly, not as you think it needs treatment! Then, where will you be?

7/ 3/07 3:57pm

Hi Anne,

I was wondering if you were replying to me, or Alex?

Yes, emergency rooms are understaffed and overworked, unfortunately. I don't think that this is all because people are going for non-emergencies, though. I have travelled all over the world and talked with people in other countries. They can't even dream of waiting more than an hour in the ER. This is a very complicated topic that can't be summed up in one or two sentences, that's for sure.

Anne, I do not visit the emergency room often... actually, I have hardly had to go at all for years since I have been seeing a pain specialist. However, sometimes, as you point out, things get out of control. Also, because doctors can be busy and/or travel a lot, they aren't always available when you need them. If the pain is excruciating and there is no one else to help, I believe going to the emergency room is a viable solution.

There are also certain pain conditions that can NOT get out of control, like migraines. If one has had a migraine for too long they can turn into a stroke.

It seems you think that I am going to the ER a lot, or approving of others going a lot...but I am not. I am not advocating going to the emergency room at every turn. It is always better to call your doctor first (or talk with him about an emergency plan, like I mentioned).. however, there are simply times when this does not work out.. and I do not think that people should suffer.

Stacy

7/ 3/07 4:02pm

I also mention in the article the idea of fast track care, which if you have not seen before in your area, is a part of the hospital where non-emergent cases can be seen. This allows for the cost to come down because you are not utilizing trauma capabilities and can be treated for your problem at night/on the weekend/holiday/etc. Another idea is going to one of the many walk in clinics that are open (usually) 7 days a week and are set up for non-emergencies like bronchitis, strep, broken bones, etc. Sometimes these clinics also offer primary care physician service/internal medicine/physicals/etc if you need one.
:)
stacy

7/ 3/07 6:52pm

so anne, when you wake up in the middle of the night or even late evening after hours when YOUR dr is out and won't be "bothered" at home, and you are in excruciating pain, you want to kill yourself rather than bare through it you wouldn't go add ONE patient to the OVERLOADED DR's at the er, give me a break, stacy meant nothing like that! Me being a true chronic pain patient understand what she meant, and when OCCASIONALLY (once MAYBE twice a year) when your meds don't cut it, that does NOT put you into the drug seeking category, i know the kind and we are not them and am sick of being treated as such, I work with patient's who are such and they often get treated better than we do and i work in that hospital.

beth

11/23/07 6:19am

The reason non-essential things are 24/7 is because the people providing them are lowly paid, easy to recruit and replace. Telling a top-flight pain doctor he needs to work news-year eve and every-other weekend is going to make a vacancy in your medical team that takes not 10 minutes but 10 months to fill.

The staff who are working those shifts that are "out of the norm" are those who are generally either junior or in teh case of doctors, in educational roles such as (in UK) Senior House Officer. There is not enough expertise to spread around- and even if there was, its not affordable. Paying someone 40 grand a year and then paying time and a half for out of hours is one thing- a higher level person makeing 2-3 times as much and then paying time and a half (or more) is something entirely different.

For me, having a plan on what can go wrong and having ideas on how to fix it is better than a spontaneous ER visit- for most people with chronic pain, you have some idea in the hours/days preceeding that things aren't going well. Its having the relationship and honesty with your ncare team about your needs, but also being willing to say "I am not doing well- I better slow down and take care of myself" before you crash.

Oh, if a patient showed up with their records and I was the nurse in Casualty, I would class them as an attention-seeker/ munchausens-type. If however they had a brief overview from their doctor, a letter and a brief history, I would see that as someone who had genuine needs and was getting support that I needed to cooperate with. I'm not labelling anyone- but that is the truth about how you will be perceived by many if not all the staff: "civilians" who carry their medical records around like being sick.

Its amazing how nursing perspective for a changes when you develop chronic pain yourself! Now, I might be a bit more willing to see that maybe this person is used to fighitng to prove they really need help, but before my own illness the label would have gone right on the foreheard: "CALL PSYCH".

Sad, but its true: no one else can see your pain, and if you "protest too much" you will lose credibility.

Hlp4pain

3/10/10 1:39am

Um, Yaaa Wow. Have you stopped to consider that every single person is different? And that some people have medical conditions that require emergancy care? Would your doctor allow you to keep a vial of morphine in the fridge ... just incase?? Some people, like myself have chronic conditions that flare beyond the lack of reality of getting your doctor out of bed and away from his/her family at 3am when a kidney stone decides to pass, or when a ovarian cyst ruptures and all sorts of other conditions which make it impossible for someone to avoid the ER. In a perfect world none of us would require an emergancy room. However, for some it is an inevitable event and certainly not one any person enjoys. Seems far more logical to me to have an 'ER plan' and what is family for if not to be there when you're sick and in need of support and comfort. If you know of a doctor who would prefer to be bothered at all hours day and night, by all means please let me know because I would move to where this doc practices so fast there would be a level 5 hurricane trail'n behind me! Just my thoughts. And btw, I love the idea of an ER plan. Seems logical and as if it would help to save the ER time as well as letting the dr know you are a legit pain patient and not simply seeking drugs. Having your pain doc work something out with the ER is the most logical and Brilliant idea ever. I had said I would never go back to an ER. However, if I could have my doctor write out a plan of action for me and I knew I would be treated with dignity ... i'd never pass an other stone at home ever again. So, thank you to the nice smart lady who enlightend me! And please forgive my spelling. I am dyslexic. Maybe because of that I shouldn't visit any chat rooms? lol ... just josh'n. 'Judge Not Less Yee Be Judged" Hmmmm? didn't someone pretty darn important give us this advice? Peace out.

7/ 3/07 4:41pm

the last time I went to the er, the experience was horrible. the nurse was totally mean and when the dr came this is what he said

"well you know you have tmj, so you don't need me to diagnose you, you have pain medication, so what do you need refills on them today or what, what do yo expect me to do for you here today?!?" and this is the hospital that I work in, makes me feel comfortable ever going in again, other than I will refuse to be treated by this dr. again.

7/ 3/07 6:54pm

oh anne one more thing i forgot to ask, were you the nurse that took care of me earlier this year that i mentioned before?

7/ 3/07 6:56pm

oh anne one more thing i forgot to ask, were you the nurse that took care of me earlier this year that i mentioned before?

No reason to attack someone who is trying to help other people who suffer like she does. Stacy has done nothing but try to help those people like her. I'm sure I speak for other people, other than Anne, when I say I have learned many things, and gotten through many tough times. My mom and I also like reading Candy's stories as they mirror our relationship and situation so much, so stacy thank you so much for all you do, and don't listen to those who "disagree" (I guess we'll call it that to be nice) with you!

Kellissia

(troyal147)

7/ 3/07 6:56pm

oh anne one more thing i forgot to ask, were you the nurse that took care of me earlier this year that i mentioned before?

Kellissia

(troyal147)

7/ 3/07 8:04pm

No, first of all, I WAS advocating that we, as chronic pain patients, NEED to attempt to prepare ourselves for the WORST pain and that would include developing an honest and open relationship with our pain docs (or g.p.'s)...; This means preparing for those LONG weekends when the office will be closed and for when we, ourselves have to go out of town, making sure we've got enough of our usual medications and, if necessary and prescribed, break-through pain meds; YES, e.r.'s are overworked!

And, for anyone who doesn't think I have pain, just think how you would feel if you had hardware in your tmjoints that had been loose for 13 years. I have gone through more than thirty (bilateral.. so, actually, more than 60 if you count it by procedure) tmj surgeries so, don't you try and say that I don't truly understand pain! Maybe I just handle it better? Just try and imagine what it is to be literally and actually stabbed in the head and face... by the loose FEP's and broken and loose screws (waking every day and feeling EXACTLY as I did following surgeries; that kind of pain) and then rag on me about pain, ok? Regarding migraines; I have migraines at least weekly. Some days they are worse than others. However, I have asked my doctor for a medication that works for me to prevent the migraine from really blowing out (If you've ever had migraines, you know what I mean; the kind of migraine that makes the room spin and, of course, causes repeated vomiting).

You will never, however, convince me that going to the e.r., when you already have a pain doctor, is the reasonable thing to do. I did not label anyone as, "drug-seeking". However, EVERY e.r. doc has placed this label on MANY patients, including chronic-pain patients which, I agree is wrong. However, it does NOT mean it does NOT happen!

Again, I stick by what I said. If you have a good relationship with your pain-specialist, there should be NO reason for you to have to call or wake-up anyone else to take you to the emergency room.

Stacy; setting out a "plan" for going to the emergency room sounded a bit irresponsible to me. Perhaps you should have placed more emphasis on the doctor-patient relationhip; and, I am NOT referring to the e.r. doc!

I also did not say that there is NEVER a time when the e.r. is necessary for pain patients. However, Stacy, your post made it sound like this should be your "secondary" care place! And, MOST hospitals do NOT have the ambulatory or minor-e.r.'s you noted.

To the whiner with the stupid comment about how I must have been the nurse who treated you badly..; well, big whaah to you! Obviously, I am not the only person who thinks that taking up what little time the e.r. doc's have on what you could have prepared for is inane! You say you work in a hospital? Then do me, and yourself, a favor and THINK about this!

7/ 3/07 9:40pm

For those of you with the MULTIPLE messages and nasty things to say to me, heres' one more thing..., "I forgot to say"...{to quote most of you}

To me, this post about how to prepare youreself to get what you want from the docs at the e.r. or minor e.r. sounded JUST like that. Telling people you really do not know how to make sure they can get drugs prescribed IS irresponsible.

Now, again, I have NOT said that I do not ever go to the e.r. I went there about 4 weeks ago because I injured my thoracic spine (causing more pain than I've had since 1988; more than has been for years). I sat there for well over an hour and, as their chairs are uncomfortable, I decided to leave. When I went up to the front desk to explain that I could wait no longer, I noted 28 charts for people ahead of me ( I asked the nurse how many) waiting to be EVALUATED by the front/ triage nurse! NOBODY in the waiting area "looked" sick or like they were in pain.. except for me. Add this to the number of patients brought in by ambulance and I would hope that you could understand that these places are understaffed and what staff they do have IS overworked!

My other point was about continuity of care; THIS IS IMPORTANT AND CAN SAVE YOUR LIFE!

And, Stacy: NO, a true migraine cannot "cause a stroke" because it's left untreated. You may want to look that one up, huh? A stroke is caused by clot(s) and, if you have a TRUE migraine, you, almost always do NOT have a clot and, though it feels like it could kill you, it will not! So, please get your facts straight.

I'm sure the lot of you will have more nasty commesnt to make; honestly, I do not care. I DO know of which I speak, though, as I used to go off to the e.r. for every little pain and, sure, I was labled as "drug-seeking". Then, I found myself a pain doc approx one-dozen years ago. Now, I RARELY have the need to go to the hospital. In fact, for my usual pain, the last time I went there was about 4 years ago; it was a holiday and I had not prepared for it! Other than that, I went last year when I broke my foot; and, I gave the info about the pain meds I take and left with a CAST and doc-referral ONLY!

Maybe we all need to accept that we will have pain every day (I know I have pain all day, every day; I just go back to bed when it's that bad). Drugs; extra drugs, are not always the answer!

7/ 3/07 9:51pm

first off, i never said that you don't have pain, we all do. especially those of us who have any multple surgeries. so you are saying you would never go to the er for your tmj pain before you killed yourself, i hope that's not what you're saying as for stroking out from a migraine, yes that actually can happen, i've seen a pt from that before, it might be rare, but it CAN happen so don't say that it can't

(they stroked because the dr. neglected to give them the correct medication to treat it.)

I do apologize for it posting three times, i have never posted. that is my bad and as for er's being overworked yes they are but that isn't a reason for someone not to go WHEN NEEd be. I also agree that people shouldn't go when they are in their normal pain that WE all have, and yes i have migraines all the time and know what they are like looks like we have to realize that we will always have our own opinions

7/ 3/07 9:53pm

not EXTRA drugs, DIFFERENT drugs is the key word here

7/ 4/07 9:19am

anne, just curious, I am not trying to get snotty or anything, trying to learn from those who have been here longer than me

you believe that when you have a pain dr. that you shouldn't have to go to the er, in the case that you wake up in the middle of the night or even 10pm in excruciating pain and none of your medications works, what do you do (other than wait it out), do you have a good relationship where you can call your pain doc at night?

I live in a tiny town, and am lucky to have a pain dr. 80 miles away, when awaking by myself, i can't call them at home, the only thing i can do is leave a msg at the clinic and wait for a call, which doesn't do me any good until the next day around 11+

Kellissia

Teri Robert

7/ 5/07 5:11pm

Hi,

My name is Teri Robert, and I'm the lead expert on MyMigraineConnection. You can read more about me in my profile.

So, I do know about Migraine disease, the increased risk of stroke that just having Migraine disease presents, and that Migraines can and do cause strokes, some of them fatal.

Anne said, "And, Stacy: NO, a true migraine cannot "cause a stroke" because it's left untreated. You may want to look that one up, huh? A stroke is caused by clot(s) and, if you have a TRUE migraine, you, almost always do NOT have a clot and, though it feels like it could kill you, it will not! So, please get your facts straight."

There are two kinds of stroke:

An ischemic stroke is caused by a clot. Hemorrhagic strokes occur when a blood vessel ruptures or leakes into the brain. That's the kind of stroke that Migraine tends to cause. Specialists in the field of Migraine disease consider the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II), to be the gold standard for headache and Migraine diagnosis and classification. According to the ICHD-II, when the pain of a Migraine lasts longer than 72 hours without at least a solid four-hour pain-free period, while awake, it's termed Status Migrainous, and emergency treatment should be sought because of the increased risk of stroke. You can find more information in Status Migrainous - The Basics.

I just returned from the American Headache Society conference, where I spent time with some of the world's leading experts. They agree with this. There was even a session about emergency room treatment for Migraine at the conference.

As I said, just having Migraine increases our risk of stroke. You can find more about that in Migraine and Stroke Risk.

So, to those of you with Migraines, if you have the worst Migraine or your life, or if your Migraine has put you in Status Migrainous, go to your doctor. If your doctor is unavailable, please do not hesitate to go to the ER. This most certainly IS an emergency.

I have now lost two young forum members who died because they were in Status Migrainous, did not seek emergency care, and suffered fatal strokes. Please do NOT follow their example.

Best wishes,

Teri Robert

NeuroScientist56

11/17/11 8:23am

Sounds like your "good relationship" with your pain doctor is more of a "drug dealer relationship." For someone preaching that "medicine is not always need" you seem to have plenty. Your doctor gives you extra breakthrough medication. Unless he is giving you morphine or one its relatives for breakthrough pain your pretty much screwed if you are trying to treat what is considered a chronic pain flare up. With all of that being said, I am an anastasiaolgest that specializes in pain managment. I tell my patients two things when suffering from a chronic flare up. First, call my office if your pain get unbearable. Even during off house there is an answering service that pages me or a doctor that I have left on call. This allows me to assess if the patient needs to go in or not. It also allows me to call ahead and let them know a patient is arriving. Second,I tell them to always take my treatment letter (this includes their condition, current treatment plan & a suggested abortive medication list) in with them. Bring a copy they can keep. So yeah the ED's in are way over crowded, fact! However the notion that YOU (Not a doctor or even familiar with the patient history) are quallified to give advice against seeking medical attention is not only wrong but it's also a bit unethical(as your a nurse?). So people call your pain doctor before you leave for the ED and TAKE ONLY THEIR ADVICE! Also I am posting this from am iPhone so please disreguard any miss spelling. Hope this helps.

NeuroScientist

11/17/11 8:53am

The message a above was for Ann! Also look up some mirgrane research. There are plenty of unknown causes of migraines but research has shown that some are do to extreme vasoconstriction. That along with an increased BP due to pain can cause either a bleed or a clot. So migranes are not mini stroked in that sense. Althogh vasoconstriction of the blood vessels in the brain leads to lower oxygen transport. Ann since your a nurse what does this mean? In case your stumped; A stroke starves the brain of vital oxygen, killing brain cells. So If someone suffering from a migrane cause from vasoconstriction, they are also depriving some oxygen to their brain. Once again I am a doctor, but not anyone's here so check with your doctor about what he/she would like you to do. Also a word to all the HP's out there Be carful you don't exceed your scope and limits of your training. I.e. RN's are not diagnostitions and should allow the doctors to do their jobs.

sue

7/ 3/07 8:46pm

Hmmmm...

Sue

Jenn B.

7/ 3/07 11:41pm

Hi, I thought I'd chime in again, not to accuse or because I'm mad at anybody (except the system), but just to share my experience with the ER and show that you do not have to go often to be mistreated.

I have gone twice to the ER for migraines. The first time was the worse I've ever had, I'd tried everything I had, nothing had worked, and after 4 days, it wasn't getting any better. I didn't want to go, I just wanted to wait it out, but my therapist insisted I go to the ER. So I went... I got an IV treatment, which didn't help. Then they gave me some pills, told me to wait half an hour, then I could go home - whether they helped or not.

Then I went back a year later for bronchitis. I'd gone to a walk-in clinic when I started getting a cold to get a pump because I know I'm fragile and I wanted to fight this one off quickly. But one evening, I started coughing literally non-stop. I was there with a friend, so I was given the proper meds, but I had to wait 5 hours with only a mask and ice chips before seeing anyone. Even people in the waiting room were getting angry that I wasn't getting seen.

My next visit to the ER was about 6 months later - for a migraine again. This time, I showed up alone. I was left sitting in the waiting room for 17 hours , given 3 Tylenol and 3 Advil by a nurse somewhere in the middle of that. The waiting room emptied out completely a few times. I was told I had to wait and see a specialist in the morning. Who was the specialist? A psychiatrist... go figure!

My last ER visit was a year after that, this winter. I could barely walk I was in so much pain. I couldn't make it there on my own, if I didn't have a friend who was able to take me, I would have had to go by ambulance. All the time my friend was with me, I was treated wonderfully - I was even left in a room for the night!! The next morning, my friend had to leave to go to work for a few hours. They sent me for a last test, and finally found a huge ovarian cyst. The doctor told me that meant that I was fine. He sent me home with nothing and a note saying I could go back to school the next day.

So I slept for the rest of the day and went to school in the morning, I felt a little better. I lasted 1 hour and had to leave. By that evening, I had to go back in. Advil just wasn't cutting it. I was treated fine, except just to 'reassure' (or quiet me) they sent me home the next morning with a couple of antibiotics and told me I could take Advil for the pain, but no more than max recommended dose.

Luckily, by then I had the week-end to recover before going back to school. So it was the maximum dosage of Advil for me for the next couple of weeks. In the hospital, my intial reflex would be to refuse when they offered another dose of morphine because I hate having to take anything. Then I would convince myself that I was entitled to having it and I didn't need to endure the pain for no reason...

Do these visits warrant being labelled as drug-seeking or being sent to psych or home instead of being appropriately treated? Are they exagerrated? Cluttering up the system?

I do agree that often people do hold up the waiting time in ERs while they could wait until morning and go to a walk-in clinic, or simply start by asking for information by calling their family doctors, a healthline or their pharmacist. But I think that someone who chooses a career, whatever it may be, has no right to let their anger/fatigue/resentment/annoyance rub off on their clientele, especially when dealing with people in a vulnerable position. That's beating on people when they're down and it's just wrong.

Wow, I've written way more than I intended to, sorry about that! :) So anyways, that's just my 2 cents' worth. Have a good night all!

7/ 4/07 9:14am

iwas not beating on anyone when they were down, i was just upset that i was being told that I was wrong by going to the er twice in one year, same as you.

and it was the conception that people go to the er for MORE medications, with some that may be the case, but with my last visit, one of my medications was changed because the dr tried something different and this med has been working great, so I am actually happy that I went to get this outcome.

and stacy was only trying to help us out, it also wasn't right for her to be attacked from the get go.

kellissia.

Candy Franks

7/ 4/07 8:47am

The American College of Emergency Physicians recommends keeping an “emergency file” containing your insurance cards, a list of all medications you are taking, a list of any chronic conditions you may have, operations you have had, and allergies (particularly drug allergies) that you have. These can be kept in a folder that you can easily grab on the way out the door should an ER visit be necessary. You can also include copies of recent laboratory or diagnostic test results. Doing so may help reduce both the cost and waiting time associated with your ER visit.

ER visits are a legitimate part of pain management. Pathology is not static. Sometimes a fall, or activities that a pain patient should not be doing, or any number of other factors, can cause an acute exacerbation of the pain. That is where the ER fits in. However, the ER should NOT be a substitute for adequate pain management in the first place.

In women of childbearing age, migraine significantly increases the risk of ischaemic but not haemorrhagic stroke. This finding comes from a large European hospital based case-control study of women aged 20 to 44, in whom both simple and classical migraine were associated with about a threefold increase in risk of ischaemic stroke.

A review conducted by a group of Canadian, Spanish, and United States scientists of 14 studies on the link between migraines and stroke suggests that migraine may be an independent risk factor for stroke.

7/ 4/07 1:50pm

Candy; Yes, thanks for putting in these facts.

What I was saying and will stick by, forever, is that e.r. visits should be LIMITED by chronic-pain patients as we should be treated for this pain by the doctors we see for this PAIN! Again, to me, the post by Stacy appeared as something different than, if you have an emergency; a fall, bronchitis, a headache that seems different than a "usual migraine", then YES; ABSOLUTELY, you SHOULD go off to the e.r., esp. when it is after-hours for your regular doctor. However, for those of us who DO have terrible migraines or other break-through pain on a fairly regular basis, we need to be prepared with different medications, to be kept on file and filled by the pharmacist or kept at home for these urgent situations.

Remember; the e.r. is for EMERGENCIES: NOT urgent situations. The walk-in/ ambulatory/ minor-e.r.'s are generally open (even those in the hospital) only during NORMAL doctor's hours, too! So, if you're going off to one of these, it would surely be better for you to see your OWN doctor, for that continuity of care! Mixing medications, no matter how innoccuous it may seem, can be DEADLY!

And, I hope this is the last I will say about this!

Jenn B.

7/ 4/07 4:16pm

I agree 100% with what you just said Anne. My only frustration is that we chronic-pain patients - who do need to use the ER, for emergency situations - are too often treated like rubbish simply because we have some label stamped on our file. Certain diagnoses have a lot of stigma and prejudice attached to them and it's very unfortunate for those who don't fall into that category because they pay the price for the abuse of the system done by others who are perhaps less in need.

So I believe everyone needs to be sensitized to this issue - not only patients and medical personnel but also the general population as a whole... and it's coming along. Slowly, but there is headway being made. It's just frustrating and tiring and discouraring all too often.

But hey, it's the turtle who won the race isn't it? :)

7/ 4/07 6:25pm

I agree with both you, a big part is where I live that is hard to find a physician who knows the disease around here, let alone how to treat it (like i said the closest dr i have is 80 miles, like most of you)

maybe this is why we are treated as we are, as they dont' understand it so they don't know the best to treat it?

I'm guessing this also the way it is around the country (other than the specialists out there)

Synergy

7/ 5/07 10:54am

Ok. Guys…

Can we all try to remember why we are here! If we disagree, we can be a bit more diplomatic. We don’t need to “call each other out”, so to speak. We are all here trying to help each other!

Back when TMJ Friends was around, Stacy and I had knocked around the idea of creating a USB key template that could be loaded and hung from your key ring that would store vital information. All an ER would have to do is plug it in, and your information would be readily available. Personally, I do worry about having an accident. My joint is currently cemented shut. What would happen if an emergency crew tried to intubate me… or used latex gloves?

I have thought about taping the info to my steering wheel, but if the airbag deploys… the info would be gone. We also have to consider that emergency personnel would have to be trained to grab your keys. Short of tattooing the ever-changing information to my chest… I don’t know what the answer is

In an ideal world, there would always be someone there to go with us, but that is not always the case. I have been to the ER a few times in the past few years from having bad reactions to new medications, not being able to stop throwing-up, falling down and hitting my head, or passing out and losing chunks of time. I have resisted more times than I have gone because they have no clue what is going on with me… and I am usually to sick to try and explain it!

One of the problems with this type of medium is that we are not privy to the author’s inflection or intonation, so when we read, we apply our own. No, weekly or even monthly visits to the ER is not a good idea. If you find yourself going that often, talk to, or seek out a pain doctor to help you manage this. What you are doing is obviously not working, and continued visits will land you in a psych ward somewhere. Hospitals are networking. That said, things do happen in life and going to the ER is a fact for many of us. Be prepared… and do what you need to do to take care of you!

Breathe……….

7/ 5/07 12:41pm

well said, thank you.

kellissia

beth

11/23/07 6:30am

The medic Alert foundation, an international charity, can provide a necklace/ bracelet and wallet card that provides lifesaving medical information- the jewelry says something brief, maybe in your case "FROZEN TMJ" or something, and a registration number, and if the appropriate kind of person calls, the medic alert foundation will give them your name, doctor, hospital, medical info, medications, etc. Google Medic Alert Foundation. Its not expensive, and all health care and emergency personel are trained to look for them.

Mememarie

7/ 9/07 10:10pm

I read the article, which, btw, I thought was an excellent guide to use for ER visits. I have a chronic pain condition, Reflex Sympathetic Dystrophy (RSD/CRPS). I have had to visit the ER before and I think the "travel guide" was GREAT. There seems to be some contention, though, with opinions flying to both sides of whether or not pain should be treated in the ER. I thought I would throw in my 2 cents worth, from the view of a chronic pain patient. First off - Do I think pain should be treated in the ER? NO, not usually. I say "not usually", because for the most part, I have pain medication which I use daily for pain control. BUT... something as simple as bumping into something can cause my pain to spike so badly that I cannot get control of it, no matter what! I have RSD in my neck, shoulders, back, sides and right arm. A few weeks ago, I was getting ice out of my freezer (top of fridge kind) and the small door came back and bumped against the back of my neck. Most people would think this would not be significant, but it was. Within 6 hours, I couldn't even begin to turn my head, extend my arm, or even have any sort of sound/vibration stimuli around me. Only someone who has looked up what RSD is would understand why this is, but I can tell you from my experience that I would put up with any other kind of pain, except this. I cried, which of course, did nothing but make the pain worse, but I could literally not move, my body was frozen in some kind of "pain hell" that there are no words to describe. It was a weekend, it was night time, there was no way to reach my family doctor... I had the pain meds I am regularly prescribed, but they were not even taking the edge off of the pain.

Do I make a habit out of going to the ER? No... not at all, but THERE IS a time and a place for everything and this was one of them.

For those of you who do not live in a rural place, and don't have to wait almost 6 months to see a Pain Management doctor to see you (let alone he is 3 hours away) probably have no concept of what it is like to truly be desperate. My family doctor is the one who treats my pain on a regular basis. He does not take calls on the weekend. His answering machine instructs his patients, that if they are experiencing something that cannot wait until Monday, to go to the ER. There is only ONE ER in our area, so there are no other choices.

I think we all need to look at this issue from another person's point of view, try to put yourself in another's shoes. To try to say that if you don't go by ambulance, you shouldn't go, is just ludicrous! There are always exceptions to every rule, and I for one, would never again be afraid to go to the ER about my pain if/when it gets that bad again.

I see my family doctor on the 26th of this month for my regular monthly visit and will ask him about making an "ER Prescription" as that is one of the smartest things I have read in a while...

Thanks, Stacy, I found it very valuable!

Kudos to you!

Amy

11/10/07 10:37am

Hello,

I suffer with fibromyalgia, muscle spasms, and Reflex Sympathetic Dystrophy. There have been times I had no resort but to go to the ER. When I moved to Indiana in July, I called every PCP in the phone book, they allwanted payment in full which I simply could not do.

There were times that the pain got so bad I would have to call an ambulance, my morphine just wasn't working. After 4-5 visits, I got my records from the hospital. I was totally misquoted, called psychosomatic, and my severe anxiety became the main issue.

When I lived in NM, I was seeing a pain specialist who was in Pueblo, Colorado a good hour away. Because he knew he would not always be available to me, he wrote a letter for me to carry and give to an ER should I feel I need to go. He knew what I went through at our local ER. He stated my diagnosis and that I may need to visit an ER from time to time for pain management should I have breakthrough pain. Well, the inevitable happened, I had to go to the small town local ER and of course I got the same doctor I had seen on numerous occassions. He read the letter and told me this was entirely unacceptable. That the ER was not a pain clinic and my specialist needed to give me pain meds not him. I sarcasticaly stated, well I'll just run up to Pueblo tonight, its only Saturday about 10:00 pm. I'm sure my specialist will be happy to meet me at the surgery center for a spinal block. The ER doctor made sure I did not get pain medication and informed the other staff not to give me pain meds if I came in. Then he wondered why I overdosed on Hydrocodone twice. At one visit he arrived in the ER and looked at me and said, what's happening- I've got ten other patients. One doctor even asked me, have the Drs told you this is psychosomatic, to which I replied," no they haven't." She then asked if she could take a medicine bottle out of my purse. I replied yes, knowing exactly what she was wanting to see. When she asked what it was because I had taken the label off, I gladly told her "Tylenol and aspirin, if you look real close you can see that I wrote just that on the bottle but it has worn off a bit." Once after a syncope spell where I was put on a backboard with my head strapped down for a good hour or more, I started having severe pain in my left side and began to cry. The doctor asked me why I was crying and I replied because my side is killing me. To which he replied, well you've had that pain for a long time now. I just looked at him in disbelief. OK, that makes it feel so much better.

I am so afraid of being judged because I do have mental issues with depression and anxiety that I am afraid to say anything anymore. It is always twisted no matter what I say that makes me look like I'm bonkers.It's like I'm damned if I do and I'm damned if I don't.

I advise everyone who has chronic pain to always take someone with them to the ER to help witness any inaccuracies. When your records recommend psychiatric counseling and your reporting inaccuracies in your records, it's a lot easier for the records department to believe you when you have someone backing you up.

Amy Smith

Geneva IN

11/17/07 3:02am

Dear Amy,

Gosh, I am so incredibly sorry about the cruel and brutal treatment you have received. It is not fair and you have the RIGHT to be taken seriously! I hope now that you have a primary care physician or pain specialist who does not allow this kind of thing to happen to you. No one deserves to be treated with disrespect *just* because of the type of medications they are on... it's so awful that JUST because of a type of prescription med we are on we can be treated like second rate citizens .... diabetics would never be treated like this because they are on chronic medications. I'm hoping that in the future this attitude is improved...but we have a long way to go, unfortunately.

Hang in there!!!!!

Sincerely,

Stacy

PS - I also recommend getting a copy of your records from your doctors after every visit. This way you have up to date records in case something happens.. you also know what your doctor is recording on them and can address any inaccuracies very quickly. You might not be able to get your records for the appointment you just had *right* after the appointment... if that's the case, just get them after the next appointment.. that way you are only an appointment behind all the time. hope this helps!

Amy

11/18/07 12:39am

Thanks for the input, Stacy.

Can anyone recommend how to go about getting mistakes in your medical records corrected? It is easy to fight that your temperature was incorrectly reported at 122*, but saying a doctor misquoted you is a little harder to fight. Foe example, a ER doctor had asked me when my last menstraul cycle was and I explained to him that my gyno decided that since the menstraul bloating made my pain worse, he would put me on continous birth control pills. The ER doctor replied, "well you should be having a period at least every 3 months." To which I replied, "Oh, I was never told that." My record states that I told him,"I should never have a period."

I also love the fact that they give pain meds that make you groggy and in a daze, then they expect you to answer them correctly and quickly. Heck, you may not even know what color the sky is, let alone your last BM.

I have a doctor visit on 11/21 and I will see what my PCP recommends to do for mistakes made in medical records. I will report what she says.

Ok,I will quit my griping but it sure feels good to get it out to people who understand. I also am in pain and I'm grumpy.

Thanks Stacy for a great site.

Chronic Pain Sufferers united we shall be!

Amy Smith

Betty Boop Too

11/16/07 10:48pm

I've been a chronic pain patient for nearly five years. I have read and found so many horror stories that others have shared about their visits to the ER, that I am terrified to be forced into going. Since my pain started in early 2003, I've only been to the ER on one occaision. And it was my original weekend that I broke down in severe pain.

I have discussed this situation with my PC physician and he and I have a emergency plan. I have a file on my pc in Word, that has several pages of medical information listing all my physicians and their contact information, all the medical procedures that I have had done on my spine, and I also included my opiate paim medication 's contract, with an additional listing of dosages and every medication I take, so the ER doc has full knowledge of what I have agreed to with my own phyisicians. My Primary care doctor actually recomended that I carry this information as he did not want me to be abused by an ER physician or his staff. (his words not mine).

When I travel I keep a manilla envelope packed in my suitcase or carry on, and when we spend weekends up in Seattle visiting our son in college, I also keep an envelope in my purse incase of any accident for paramedics to see too.

I have recently been pondering the idea of a medical elert bracelet to put a note on the back for medical personel to see that I'm a chronic pain patient and to search my purse for additional medical info.

I have been blessed that for the most part, I have plenty of medication on hand to treat myself, I've had a few occaisions that I've had to have my doctor contacted, to allow me to make any adjustments to my meds until the higher levels of pain have passed and then instructed to return to my regular baseline dosage after the pain comes back under control.

I have fallen a couple of times and I have also slipped in the tub or shower a couple of times too, that have required a temporary dosage change to handle the higher levels of pain.

I know if I were to fall on the ice or snow this winter that I would have to call for help and depending on the level of pain, I would go to the ER if I needed too. As we never know what other injury that we may have.

I think that Stacy's advice to be prepared is very good and all pain patients should be prepared for the occaisional necessary visit to the ER. I don't have migraines, but both my mother and sister do and they are forced a few times a year to be taken into the ER to get the series of two injections that help them to stop their headaches and sometimes are the only way they can regain any control, I am normally the person they call to go with them and drive them.

I think it's tragic that some pain patients have been treated as criminals in the ER, but then on the other hand, we must place ourselves in the shoes of the doctors and staff in the ER and also consider their position and how many times they have had someone show up that is a drug seeker. I choose to give them the benefit of the doubt and also to avoid having to use the ER, unless absolutely nesessary.

When I have to go, I will be prepared with all my documentation, that also hold instructions from my pm /pc docs, as to what they need to do to treat me.

I really think for some pain patients that for what ever reason, they may not of found their correct dosage, they may be severely undertreated and having the knowledge that I know that it takes several months to years to finally find the correct dosage of meds, these individuals may need to see the ER more than some of us who've already been through the dreaded undertreatment of pain in todays medical world.

I have one more comment then I'll shut up!

When you travel anywhere, you should always have your meds in their correct prescription bottle with the correct label on them. Whether you are flying or driving. You could be unfortunately delayed and also find your self in jail, if you carry your prescriptions in another container that does not have the correct and legitimate information on the bottles. If you choose for what ever reason to carry your meds in a plastic baggie or what every you feel seems handy, you can find yourself a a bind, as you are transporting a controlled substance and without the rx label you can really get into trouble.

I really think as Chronic Pain Patients that we have to really follow all the directions and be very responsible with our medications, it is up to us and our behavior to make sure we are always watching out for all who suffer in pain by being good stewards with our meds.

Now I'll hush

Thank you Stacy for this share post and to everyone else who has shared their comments and concernes.

Betty