@Forum_Moderator [QUESTION FROM FACEBOOK] How can a person with undiagnosed (yet chronic and severe) pain get the help they need at the ER? Because I don't yet have a diagnosis I am often treated like my pain is NOT real and that I am simply there to get my hands on pain meds. How can I get an ER doc to understand my situation even though I am not as easily "categorized" as other patients? How can I help them acknowledge that my pain is very real and needs as much help as other patients' problems? Would love some insights on this while I sit on the waiting list to get into see a pain specialist.
Yes it is difficult and often hit and miss in getting staff that can take the time to sit down and try to understand. I think at the start you should not try to do this at the ER. While you are waiting for the Pain Specialist, make up a flare-up plan with your family Dr and if you really have to go to the ER bring it with you. The ER is not the place to expect a Chronic Pain diagnosis. If you really do end up having to go, then do the things I have mentioned in earlier questions. Certainly trying not to go when things are predictably crazy is a start...avoid evenings, for example—especially on long weekends!
@Forum_Moderator said: [QUESTION FROM FACEBOOK] It was at the ER that I was humiliated and told by a nurse: if you think you are coming here to get your morphone you can forget it - it won't happen". I had a very good Dr. tell me to come to his clinic but only if i was willing to work with him to completely get OFF of all the morphone. I am continuing to see him, and I have cut back quite a bit, but the pain became unbearable so he did up the long acting one again....but only if I agree to totally get off all of it eventually. What will be done to help me with my pain - I am allergic to all the other alternative pain meds! THAT is my question for the DR.
I'll answer this with my patient hat on. Well, I’m actually in a very similar situation and feel I have run out of options too. I’m not able to practise because of my pain so it has had major impact on my life. It is very difficult to admit that medicine just doesn’t have all the answers. I am at the stage where I don’t think there are any treatments left for me and now I am trying my best to find ways to increase my coping ability. I’m sure you know all of these techniques, if not, they are in the Pain Toolbox.
I’m not a pain DR and I don’t know what you've tried, but I will say it may be worth exploring non-medicine solutions, E.g. in neuropathic pain there are surgical, ultrasound ablative and neuromodulation options...ask your family doctor about these...most of them are known to Pain Specialists...it’s a long road and I'm on it too...I wish you all the best whilst on it.
@Forum_Moderator said: [QUESTION FROM FACEBOOK] My question would be why do street junkies get help with meds and drugs and I am a senior with arthritis everywhere and no Dr will give me a normal amount to ease my pain?? BC physicians have told all Drs to stop prescribing all narcotics... even in mild prescriptions.
Good question. Well junkies get help hopefully for their addiction problem. Your problem is different but important too. I can’t speak for your Dr but the narcotic guidelines are only guidelines, not a hard and fast rule they have to follow. They are trying to prevent a whole slew of overdose deaths in normal people like you and me. There certainly is good evidence that long-term narcotic use is associated with bad outcomes. However each case is to be treated on its own merit, and most Drs know that there are certain patients where small dose long-term use seems to be helpful. There are also lots of other options for arthritis as I'm sure you know well. If your Dr doesnt agree with that, then you should seek another opinion. I realise this isn’t easy but we patients have to be our own advocates and go chase our solutions.
@Drahuber What would you suggest when a patient is receiving poor care because they're considered a medical liability? I haven't in the slightest presented as a threat, but the mere fact that I had defective devices in me (badly ruptured breast implants .. silicone has migrated deeply within my chest wall and is in my lymph system .. and a lot of other places). I have acute pain from it and I feel intuitively that the pain is actually not just from acute inflammation, but that there's something more going on. Doctors locally missed 16 years of symptoms that I presented with saying breast implants couldn't possibly be causing the issues (they were!). And now I'm treated like nobody wants to address it.
@Forum_Moderator [QUESTION FROM FACEBOOK] I live with chronic pain. I have Trigeminal Neuralgia (the suicide disease) which is the most painful pain known to man and if I go to the ER in a high pain cycle I am sent home after being treated like a drug seeker, and getting no help just to be made to feel even worse. I have been told to never return to the ER for this problem because the ER is not there to treat chronic pain. Now my narcotics are going to be taken away because there is no proof they help chronic pain. What am I to do when this happens?
Well I’m sorry to hear of your struggles with Trigeminal Neuralgia (TN). I have something very similar in my leg. Well first of all, about being treated as a drug seeker...have a look at my suggestions in an earlier question that talks about that. It will be a bit hit and miss at the hospital depending on how busy they are and the Dr and staff you get unfortunately in terms of their receptiveness to chronic pain issues..but TN is a recognized disease that is well-known. So I think the key for you is having a flare-up plan with your Family Dr. If that plan might mean occasional ER visits then your Dr and you need to communicate with the ER manager about agreeing on a care plan when you come to the ED. One of the problems is that there isn’t much that works for TN, so some of the attitude you are getting from the ER staff might reflect this. Follow my suggestions and you might find you get a different reception.
As for the statement that ERs don’t treat chronic pain, that is just not correct. They certainly will see and assess you. They may not agree with you on treatment options. If they refuse to assess you then that is grounds for feedback to the ER administrator. They sometimes have trouble understanding that acute chronic flare-ups happen with chronic pain like many other chronic diseases! Just this week Pain BC and the Dept of Emerg medicine for BC have done a webinar by a Emergency Dr who is also a pain expert to educate ER staff about how chronic pain is just like any other chronic disease. It’s not a place to diagnose chronic pain syndromes or manage them on an ongoing basis, but certainly there is a role for bad flare-ups. As for narcotics, I don’t know where that is going to go, but I can tell you there is a lot of push back from Chronic Pain groups and indeed Pain BC about making sure the guidelines reflect that there are stable pain patients who rely on opiates on a long-term basis to function.
@Drahuber THANK YOU so much for doing this!
[QUESTION FROM FACEBOOK] Can an ER doctor refer a patient to a specialist? In the absence of a supportive physician with chronic back/neck pain and auto immune disease (Menieres) I struggle as I cannot stomach prescriptions. My visits to the ER have resulted in "see a family dr to discuss your options". She can’t help me. She told me she doesn’t know any specialists to help. I work full time (because I have to) and am raising a family. Where can the ER direct you for support?
@bigrig This is really in the area of pain management and not in the area of emergency room chronic pain. So I will answer this with my patient hat on. Everyone with chronic pain knows they have a baseline pain level. We as patients are trying to find medications and treatments that bring this pain level down. However, we often find that we get to a plateau and cannot get it down any further. On the other side of the pain line are the things that we do to help us cope with that pain and function with it. There is unanimous agreement within pain specialist circles that the best long-term way of managing chronic pain is maximizing these coping strategies. This includes mindfulness and meditation, exercise, and CBT (Cognitive Behavioural Therapy). It is known that many patients can change the way their brain reacts to a chronic pain signal, and yes, you are right, it takes many years. I am currently exploring these options on my own pain journey. I would recommend you read a book called “The Brain that Changes Itself” by Norman Doidge, and lots of other self-management suggestions in the Pain BC Toolbox. Good luck and stay optimistic.
I will say, when one is at the stage in their pain journey where the pain level is so high that it is dominating every aspect of your life, hearing about these types of coping strategies is very discouraging because they don’t seem to offer immediate relief. If your pain continues you will find a time in your journey where you will be receptive to these suggestions. I wish you all the best.
[QUESTION FROM FACEBOOK] My question: with the use of Pharma Net, isn't it plain to see, for the ER staff, that the legitimate pain patient presenting to the ER with an acute-on-chronic exacerbation of pain, does not have drug use patterns consistent with drug abusers? Therefore, what would be a physician's reluctance to prescribe their usually-prescribed narcotics in the ER (enough to get them back to baseline, and then enough to tide them over until they can get to their own doctor)? I worked as an ER nurse for almost 20 years, and there is, generally speaking, a definite stigma against chronic pain patients. Secondly, if a patient such as this is not treated appropriately for pain, and therefore remains in severe pain, can the patient legally choose to STAY in the ER "against medical advice" until a more understanding physician can see the patient (as opposed to the patient having to go home in severe pain)? I've seen far too many people sent home in excruciating pain with inadequate prescriptions for pain meds: i.e. acute herniated discs, or other "invisible" pains. Thank you
[QUESTION FROM FACEBOOK] I'm a bit late, cuz I just saw this...but I have 4 compressed discs in my lower back, and I'm in constant pain. What can I do and how long can I live on T3s?
@glenp This is a good example of what we’ve been talking about. You are going to get a hit and miss response on your request for a specific opioid treatment in the emergency department. When I was practicing, once I looked at your chart, I can see your pattern and have no problem giving you demerol and gravol and then letting you go home. I have no doubt that the hospital does use demerol occasionally and stocks it. If this pattern of care continues for you at the hospital, you may need to initiate a discussion with the care coordinator, either with or without your family doctor’s help. If at all possible, you should also look at what possibilities there are for getting your treatment outside the ER, and go through the steps in terms of having a flare-up plan that I have outlined in other answers.
@GubbyBadu Thanks, yes I have heard that also. I think what complicates things is that the opiates help his pain, very much so, but at a cost...big cost because he cant manage them..
[QUESTION FROM FACEBOOK] How can a person with undiagnosed (yet chronic and severe) pain get the help they need at the ER? Because I don't yet have a diagnosis I am often treated like my pain is NOT real and that I am simply there to get my hands on pain meds. How can I get an ER doc to understand my situation even though I am not as easily "categorized" as other patients? How can I help them acknowledge that my pain is very real and needs as much help as other patients' problems? Would love some insights on this while I sit on the waiting list to get into see a pain specialist.
@GubbyBadu Yes, I have heard this too, but it is very expensive. There are lots of potential treatments out there for migraine—I only mentioned the ultrasound one as it is relatively new. It is called RS-Ultrasound and it is used on nerves to stop pain conduction, and I have seen it work very well with migraines.
@Drahuber I'm so relieved to know that it's being discussed at a planning level .. I'm heartened and hopeful. It would make such a difference in quality of care for those currently falling through the cracks.
[QUESTION FROM FACEBOOK] It was at the ER that I was humiliated and told by a nurse: if you think you are coming here to get your morphone you can forget it - it won't happen". I had a very good Dr. tell me to come to his clinic but only if i was willing to work with him to completely get OFF of all the morphone. I am continuing to see him, and I have cut back quite a bit, but the pain became unbearable so he did up the long acting one again....but only if I agree to totally get off all of it eventually. What will be done to help me with my pain - I am allergic to all the other alternative pain meds! THAT is my question for the DR.
@Forum_Moderator said: [QUESTION FROM FACEBOOK] Given that there seems to be a widespread frustration with chronic pain patients and ER’s, can you please propose both short-term and long term solutions?
I certainly don’t know all the answers, but here are some:
AMAs like this raising awareness..the issues that come up here can be passed on to decision makers so the issues are recognized.
Education of ER staff to the issues around chronic pain with webinars, talks at conferences, etc. Not done well in Med school traditionally as it’s a fairly new problem and the emphasis in the ER is on acute pain.
Chronic pain groups like Pain BC lobbying educators and decision makers about the issues. Last week, Pain BC’s Executive Director attended the first National Pain Research Summit, and Pain BC received funding from the BC government to host a Pain Summit in 2017 that will have working groups bringing forward the key issues for action. https://www.painbc.ca/news/50k-pain-bcs-2017-pain-summit-ministry-health
If you as a patient get poor treatment, then certainly bring it up to the hospital. Every hospital has a complaint system in place and I know from personal experience that these complaints get to people that matter. If enough keep coming in, then the scope of the problem will be recognized hopefully. Unfortunately our ERs operate in "survival" mode most of the time and have trouble looking above the chaos and emergent issues to see other new issues...
Possible inclusion of ER doctors on phone advice line for after hours emergency advice in conjunction with the Nurse Hotline (8-1-1).
Inclusion in medical school and Emergency Med and Family Medicine curriculum so that an education base is established.
Better community resources that operate on weekends for example.
Official Chronic Pain guidelines for Family Doctors and Emergency Depts.
I’m sure there are more but there is a start!
I'm post 5 years from injury to my shoulder.2 surgeries later and now a 3rd surgery replacing my shoulder put on the shelf because it is felt by a pain specialist and at least one surgeon think even with a new shoulder,my body is in a severe pain circle.
It is felt that my body has reprogrammed neurologically and I am in fight or flight mode and so many more things were told to me.
My question is can my body be re-wired so to speak even though I will be living with an unrepaired very painful shoulder? When I say re-wired or re-mapping of my pain sensors,I am being told this needs to happen for my long term well being.I feel I am in catch up mode on a daily basis and just barely get through a day maintaining my pain.
I have never had a quality day in over 5 years and don't see this changing.
Help! Thank you
@drummergirlnancy I totally agree with you. It has been a common topic of discussion in chronic pain group forums and is being raised at planning levels by organizations like Pain BC.
@Sue Sue, thanks for your good question. I think we may have already had a question from you from Facebook earlier which we will post the answer to.
In answer to your question about whether a patient can stay in ER against medical advice…I can say there is no mechanism for this. If the patient disagrees with the treatment offered, they would need to leave and re-register. However, I fear that this is going to trigger an escalating confrontational atmosphere. If at all possible, the patient should probably try to go to a different institution or doctor and go through the steps I outlined on preparation on coming to the ER. It’s very easy to say when one isn’t in agony, but it’s the best advice I can give.
It is true that Pharmanet goes a long way in picking up patients who shop for prescriptions with different doctors and it seems common sense for the ER doctor to prescribe sufficient narcotics to get back to baseline as you say, to tide him/her over until they see their own physician. I can tell you from my own personal experience and that of my colleagues, once we have assessed that a patient had legitimate reasons for needing opioid rescue, we would do exactly as you suggested in your question. However, I cannot speak for all of my colleagues, and I can say that there is an increasing tendency for emergency physicians to shy away from this practice. This emphasizes the important step to try to prevent this situation happening by having sufficient medication for baseline and flareup at home or accessible with a family doctor.