How do I impress upon my doctors that a prescribed medicine is contraindicated?
August 20, 2012 10:27 PM Subscribe
How do I talk to doctors when they prescribe something that I believe is contraindicated for me if they don't believe or care? This keeps happening and I'm kind of sick of being a guinea pig to only have exactly what I said would happen, happen.
I've been seeing a lot of doctors for chronic pain and fatigue. No one really knows what is wrong, but through the course of it, I've had several doctors prescribe things that I know are not going to work because of either other conditions or my previous experience with a similar drug or because I've read up on the condition, or been told by other doctors that drug group x is bad for my other conditions. I tell the doctors, the tell me those side effects are rare and won't bother me, I try the drug, and exactly what I expected happens.
Most recently, my rhuematologist thinks I have fibromyalgia. He wants me to try Savella, which is an SNRI. I did not know this during the appointment, but I told him that because I have Restless Leg Syndrome, I can't take SSRIs or SNRIs as well as a few different anti-depressants, but some are okay. He did seem to get a bit defensive about it, and asked me where I heard that, and I told him it came straight from a different doctors mouth as well as my own experience trying an SNRI and nearly crawling out of my own skin with twitches. I'm also finding savella can cause trouble with high blood pressure and heart rate, and it's very well documented in my chart that I have difficult to control blood pressure and rapid heart rate along with palpitations and tachycardia. And this is something he knows because he originally referred me to someone about it and we spoke again about it today. I also have migraines, which again, is pretty well documented in my chart, but Savella makes migraines worse for a lot of people.
So, if this were my first time dancing this dance I would just call him in the morning, and explain. But I can GUARANTEE like every doctor I've told about problems with medication before, he's going to tell me that I should just try it. And if I do, I'm going to have all the side effects as I predicted and we'll be back to where I said we'd be.
So how do I communicate this to my doctor? I realize my doctor has an MD after his name, and does actually know more about this than I do. But I also know my own body, and a doctor at the same practice has said this type of drug is a no-go for one of the reasons I don't want to take it.
Additionally, I am deeply frustrated and I need to communicate this to my doctor without getting emotional. I have the unfortunate emotional response of crying and freezing up to this situation. I think it stems from feeling like I am not being listened to, as the exact situation has played out a handful of times this exact same way over the past several months. So suggestions on how to deal with my feelings in a way to not let the frustration out on the doctor.
Bonus points: I've always had trouble with various medications, either too strong or having the opposite effect, or just not working when the doctors are sure it should, etc . . . and I think it drives my doctors nuts, but I feel a bit like they blame me even though up until these most recent events (the past 6 months) I've tried pretty much everything I've been given by a doctor without much fuss, and only after taking it have discovered problematic side effects. Not every medication has problems, but a lot do. How can I make this easier on my doctors and myself?
I've been seeing a lot of doctors for chronic pain and fatigue. No one really knows what is wrong, but through the course of it, I've had several doctors prescribe things that I know are not going to work because of either other conditions or my previous experience with a similar drug or because I've read up on the condition, or been told by other doctors that drug group x is bad for my other conditions. I tell the doctors, the tell me those side effects are rare and won't bother me, I try the drug, and exactly what I expected happens.
Most recently, my rhuematologist thinks I have fibromyalgia. He wants me to try Savella, which is an SNRI. I did not know this during the appointment, but I told him that because I have Restless Leg Syndrome, I can't take SSRIs or SNRIs as well as a few different anti-depressants, but some are okay. He did seem to get a bit defensive about it, and asked me where I heard that, and I told him it came straight from a different doctors mouth as well as my own experience trying an SNRI and nearly crawling out of my own skin with twitches. I'm also finding savella can cause trouble with high blood pressure and heart rate, and it's very well documented in my chart that I have difficult to control blood pressure and rapid heart rate along with palpitations and tachycardia. And this is something he knows because he originally referred me to someone about it and we spoke again about it today. I also have migraines, which again, is pretty well documented in my chart, but Savella makes migraines worse for a lot of people.
So, if this were my first time dancing this dance I would just call him in the morning, and explain. But I can GUARANTEE like every doctor I've told about problems with medication before, he's going to tell me that I should just try it. And if I do, I'm going to have all the side effects as I predicted and we'll be back to where I said we'd be.
So how do I communicate this to my doctor? I realize my doctor has an MD after his name, and does actually know more about this than I do. But I also know my own body, and a doctor at the same practice has said this type of drug is a no-go for one of the reasons I don't want to take it.
Additionally, I am deeply frustrated and I need to communicate this to my doctor without getting emotional. I have the unfortunate emotional response of crying and freezing up to this situation. I think it stems from feeling like I am not being listened to, as the exact situation has played out a handful of times this exact same way over the past several months. So suggestions on how to deal with my feelings in a way to not let the frustration out on the doctor.
Bonus points: I've always had trouble with various medications, either too strong or having the opposite effect, or just not working when the doctors are sure it should, etc . . . and I think it drives my doctors nuts, but I feel a bit like they blame me even though up until these most recent events (the past 6 months) I've tried pretty much everything I've been given by a doctor without much fuss, and only after taking it have discovered problematic side effects. Not every medication has problems, but a lot do. How can I make this easier on my doctors and myself?
I am so sorry you are going through this. I have had similar experiences with doctors. I frequently feel like I am (an unread) chart, rather than a person.
I personally switch doctors when this happens, but I don't have a chronic condition, much less pain and fatigue. I do get how hard it is just to get to the doctor with a condition like that, much less trying several different doctors.
I jumped in to say that I have a friend who once told me that when she is dealing with something serious, she will go to see whoever is the head of that department at the hospital, as opposed to just a GP. The idea of that was brilliant to me.
I would also suggest you see if there are any clinics in your area that specialize strictly in your family of symptoms.
Overall, it sounds like you need a fresh perspective on your condition, and a group that will deliver a plan of action for you as a whole person, not each symptom piecemeal.
Oh, and the last time I switched doctors, I scheduled a consultation rather than an office visit, and I laid out in plain terms the reasons why I was looking for a new doctor, to let them know that I wasn't interested in wasting my time doing the same old tests. Being honest and upfront about my history, my needs, and my goals in the first meeting yielded good results for me.
Best of luck to you, hang in there.
posted by vignettist at 10:48 PM on August 20, 2012 [5 favorites]
I personally switch doctors when this happens, but I don't have a chronic condition, much less pain and fatigue. I do get how hard it is just to get to the doctor with a condition like that, much less trying several different doctors.
I jumped in to say that I have a friend who once told me that when she is dealing with something serious, she will go to see whoever is the head of that department at the hospital, as opposed to just a GP. The idea of that was brilliant to me.
I would also suggest you see if there are any clinics in your area that specialize strictly in your family of symptoms.
Overall, it sounds like you need a fresh perspective on your condition, and a group that will deliver a plan of action for you as a whole person, not each symptom piecemeal.
Oh, and the last time I switched doctors, I scheduled a consultation rather than an office visit, and I laid out in plain terms the reasons why I was looking for a new doctor, to let them know that I wasn't interested in wasting my time doing the same old tests. Being honest and upfront about my history, my needs, and my goals in the first meeting yielded good results for me.
Best of luck to you, hang in there.
posted by vignettist at 10:48 PM on August 20, 2012 [5 favorites]
It is completely OK to say, "I'm not doing that," or "I'm comfortable where I am with regards to that medication."
For example, I've had various doctors comment on how my drinking or pot-smoking is going to interfere with a drug they want to prescribe. I've learned to say, "this is where I'm coming from right now. Let's work within these boundaries."
No one can make you take anything and you can always refuse to take anything they prescribe to you. If you know how you're really going to react to something, then you - and your doctor - need to take that into consideration. You and your doctor should be a team where you work together to find the right solution. Only you know how a certain medication will affect you and you deserve to have your input considered as much as the doctor does.
posted by bendy at 11:01 PM on August 20, 2012 [9 favorites]
For example, I've had various doctors comment on how my drinking or pot-smoking is going to interfere with a drug they want to prescribe. I've learned to say, "this is where I'm coming from right now. Let's work within these boundaries."
No one can make you take anything and you can always refuse to take anything they prescribe to you. If you know how you're really going to react to something, then you - and your doctor - need to take that into consideration. You and your doctor should be a team where you work together to find the right solution. Only you know how a certain medication will affect you and you deserve to have your input considered as much as the doctor does.
posted by bendy at 11:01 PM on August 20, 2012 [9 favorites]
I'm so sorry you're dealing with this! This sounds really frustrating, for you and for your doctors (which is hard on you again). Arnicae hit what I was thinking right on the head, as far as doctors following the flow chart - they've exhausted the limits of what they know, or "try this drug" is the only thing they know (or the next thing on the flow chart). So when you bring up your concern, they don't know what else to do but to make you try it anyway. Plus, they may be of the opinion that the side effects are not a big deal compared to the chronic pain - and if they can find even one thing to fix the chronic pain, then they can deal with the side effects later.
I've heard some good things about coordinated care, but my understanding is that it's mostly being pioneered by certain clinics and hospitals. If you can find one like that, great! If you can't then definitely keep looking for doctors who are willing and able to interact with each other and listen to each other and to you.
For this specific case, can you find anywhere where these symptoms are documented? Maybe talk to a pharmacist? They are often more knowledgeable about drug interactions and side effects than physicians are. In addition, most side effect lists on drugs are pretty long and sort of meaningless - if one person has this symptom during the clinical tests, sometimes they throw it on the list, even if it's likely caused by something else. This is why everything on earth causes headaches. So looking to the list of side effects on the packaging may not help you as much as talking to a pharmacist or getting a second opinion.
Advice for how to talk to the doctor: Put the appeal to authority right there the first time you say it. So instead of saying "I've heard SNRIs can exacerbate high blood pressure," and later nervously explaining it was your cardiologist after the doctor is defensive, you should say, "My cardiologist has told me to avoid SNRIs due to high blood pressure." And you should find a doctor who doesn't get so defensive.
posted by Lady Li at 11:01 PM on August 20, 2012
I've heard some good things about coordinated care, but my understanding is that it's mostly being pioneered by certain clinics and hospitals. If you can find one like that, great! If you can't then definitely keep looking for doctors who are willing and able to interact with each other and listen to each other and to you.
For this specific case, can you find anywhere where these symptoms are documented? Maybe talk to a pharmacist? They are often more knowledgeable about drug interactions and side effects than physicians are. In addition, most side effect lists on drugs are pretty long and sort of meaningless - if one person has this symptom during the clinical tests, sometimes they throw it on the list, even if it's likely caused by something else. This is why everything on earth causes headaches. So looking to the list of side effects on the packaging may not help you as much as talking to a pharmacist or getting a second opinion.
Advice for how to talk to the doctor: Put the appeal to authority right there the first time you say it. So instead of saying "I've heard SNRIs can exacerbate high blood pressure," and later nervously explaining it was your cardiologist after the doctor is defensive, you should say, "My cardiologist has told me to avoid SNRIs due to high blood pressure." And you should find a doctor who doesn't get so defensive.
posted by Lady Li at 11:01 PM on August 20, 2012
I can totally relate... I've had some terrible doctors. I would just encourage you to definitely look for a new one, and I like vignettist's suggestion of having an initial consultation to see if he or she seems right for you. Maybe try to get a recommendation from someone you know? Personally I would try to find someone who is trained in western medicine but also has some kind of training or interest in holistic/complementary medicine... someone like that would be more likely to be open-minded and respectful of you as a person, not just a nameless assortment of symptoms, charts, and test results (and maybe not as quick to whip out the prescription pad, either).
posted by désoeuvrée at 11:08 PM on August 20, 2012
posted by désoeuvrée at 11:08 PM on August 20, 2012
Best answer: I've run into this problem recently. It was pretty easy to see that my knowledge of recently published articles regarding treatment of my condition and questions about off-label and less commonly used treatments unnerved my doctor. No matter how hard you may try, there are going to be doctors who are uncomfortable with a patient who is well informed. Honestly, I'd love if my patients came in saying "I read this article, what do you think?" but some people clearly prefer the "doctor knows best" model.
I ended up finding a doctor that would work collaboratively with me by asking people in the community who they liked. I asked for doctor recommendations in my area from participants on HealingWell.com's forum. Their community has been a wealth of knowledge and fantastic for learning about new or unconventional treatment ideas (at least for Crohn's disease). Expect that you may need to take information with a grain of salt, but I learned a lot of things that were less popular (ie. dietary management of Crohn's), but incredibly effective for me.
I have found that doctors who conduct research (affiliated with a university or at a research hospital) are more comfortable with my tendency to ask questions and bring highlighted articles from peer-reviewed journals. It took me a lot of bouncing around to find a doctor who worked well with me. Unfortunately, he doesn't take insurance, but I'd rather pay (an admittedly large amount) to see a doctor who listens to me than have a cheap copay on a visit where not even the resident is willing to work collaboratively.
I've also had some success asking schedulers about the temperament of the doctors, asking them if they could unofficially recommend somebody who is a more collaborative and open-minded doc. If you are looking for a particular kind of treatment (as I was, an off label use of a medication) it might not hurt to ask a nurse if they know of any doctors prescribing it in the office.) At one time, I had intro appointments with three practices scheduled, so that I didn't waste time waiting for an intake if I decided I didn't' like the docs.
Bottom line: it is your health. Don't take any medication you are uncomfortable with. You're the one who has to deal with the side effects. It took me a long time to realize that I needed to be assertive regarding my health, because nobody else was going to. I've found that while I may intimidate some doctors, the more involved I become in learning about my condition and possible treatments, and communicating with doctors, the better my health has been. Good luck!
posted by gilsonal at 11:30 PM on August 20, 2012 [5 favorites]
I ended up finding a doctor that would work collaboratively with me by asking people in the community who they liked. I asked for doctor recommendations in my area from participants on HealingWell.com's forum. Their community has been a wealth of knowledge and fantastic for learning about new or unconventional treatment ideas (at least for Crohn's disease). Expect that you may need to take information with a grain of salt, but I learned a lot of things that were less popular (ie. dietary management of Crohn's), but incredibly effective for me.
I have found that doctors who conduct research (affiliated with a university or at a research hospital) are more comfortable with my tendency to ask questions and bring highlighted articles from peer-reviewed journals. It took me a lot of bouncing around to find a doctor who worked well with me. Unfortunately, he doesn't take insurance, but I'd rather pay (an admittedly large amount) to see a doctor who listens to me than have a cheap copay on a visit where not even the resident is willing to work collaboratively.
I've also had some success asking schedulers about the temperament of the doctors, asking them if they could unofficially recommend somebody who is a more collaborative and open-minded doc. If you are looking for a particular kind of treatment (as I was, an off label use of a medication) it might not hurt to ask a nurse if they know of any doctors prescribing it in the office.) At one time, I had intro appointments with three practices scheduled, so that I didn't waste time waiting for an intake if I decided I didn't' like the docs.
Bottom line: it is your health. Don't take any medication you are uncomfortable with. You're the one who has to deal with the side effects. It took me a long time to realize that I needed to be assertive regarding my health, because nobody else was going to. I've found that while I may intimidate some doctors, the more involved I become in learning about my condition and possible treatments, and communicating with doctors, the better my health has been. Good luck!
posted by gilsonal at 11:30 PM on August 20, 2012 [5 favorites]
also: regarding the bonus question. Some people just don't respond to medication as you might think. Working in a hospital, I've seen doctors whose frustration regarding treatment got displaced onto patients. It is easier to believe that their patient is just being difficult, non-compliant, etc than believe that modern medicine may not have all the answers. And it is easy to get frustrated when your patient says "that won't work" to every idea you come up with, even if it is true. Its a very human response to frustration, but one that is hard on the patient. I don't have any good suggestions on how to handle it, other than saying "I can't help but notice you seem very frustrated right now." Sometimes calling attention to something can allow you to discuss the situation and your likely mutual frustration regarding your atypical response to medication.
posted by gilsonal at 11:35 PM on August 20, 2012 [6 favorites]
posted by gilsonal at 11:35 PM on August 20, 2012 [6 favorites]
Agreeing that recommendations are a good way to find good doctors. Just make sure the recommendations are from people who have actually been sick in challenging ways. Healthy people's recommendations can suck.
Also, I don't know how relevant it is, but consider sticking with a single doctor for a while. Getting a tricky diagnosis and treatment figured out is a journey - often for a GP as it is for you. If you stick with the one (good) doctor over the course of your journey, they get to learn about you, your body, your symptoms and your needs, and can respond more appropriately. They also form a relationship with you, and there's an emotional incentive to help as well.
I have seen both perspectives, as a - no denying it - somewhat "sickly" person who has had tricky illnesses (autoimmune), and as the son of a medical receptionist who spent his teens hanging around in the back of surgeries playing Doom on a GP's computer waiting for my mum to get off work.
Often, how a doctor reacts can be shaped more by the other patients they see, not what they see in you. By this I mean, not that they prescribe for you what's worked for others with little regard to the particulars (though that certainly happens), but that they see really out there crazy people for example (like really, my god, some of the people that hang out in doctor's surgeries...), people with addictions to prescription drugs, people with depression that's producing a host of other psychosomatic symptoms and more.
If they don't know you, that's all they'll see. If they know you, you've been with them for a while, they'll know you're not like that, what differentiates you from other patients, you're not just a collection of symptoms for them, you're in genuine suffering and anguish, in short you are a real person.
I think when you're sick, and you feel that people have stymied your efforts to get better (and it's a lot of effort when you're sick), it's easy to slip into a kind of oppositional position with doctors, specialists etc. They can become cosigns, or at least conspirators with your sickness, and you're already feeling insecure.
It shouldn't and needn't be that way. You and your health professionals are on one team, managing and hopefully conquering an illness together. If that's not happening, a switch can be a great idea, but so too can be a re-frame and being really active in getting that team mentality to work, it takes investment from both sides, but it's definitely possible.
Good luck, I feel for you.
posted by smoke at 3:33 AM on August 21, 2012 [4 favorites]
Also, I don't know how relevant it is, but consider sticking with a single doctor for a while. Getting a tricky diagnosis and treatment figured out is a journey - often for a GP as it is for you. If you stick with the one (good) doctor over the course of your journey, they get to learn about you, your body, your symptoms and your needs, and can respond more appropriately. They also form a relationship with you, and there's an emotional incentive to help as well.
I have seen both perspectives, as a - no denying it - somewhat "sickly" person who has had tricky illnesses (autoimmune), and as the son of a medical receptionist who spent his teens hanging around in the back of surgeries playing Doom on a GP's computer waiting for my mum to get off work.
Often, how a doctor reacts can be shaped more by the other patients they see, not what they see in you. By this I mean, not that they prescribe for you what's worked for others with little regard to the particulars (though that certainly happens), but that they see really out there crazy people for example (like really, my god, some of the people that hang out in doctor's surgeries...), people with addictions to prescription drugs, people with depression that's producing a host of other psychosomatic symptoms and more.
If they don't know you, that's all they'll see. If they know you, you've been with them for a while, they'll know you're not like that, what differentiates you from other patients, you're not just a collection of symptoms for them, you're in genuine suffering and anguish, in short you are a real person.
I think when you're sick, and you feel that people have stymied your efforts to get better (and it's a lot of effort when you're sick), it's easy to slip into a kind of oppositional position with doctors, specialists etc. They can become cosigns, or at least conspirators with your sickness, and you're already feeling insecure.
It shouldn't and needn't be that way. You and your health professionals are on one team, managing and hopefully conquering an illness together. If that's not happening, a switch can be a great idea, but so too can be a re-frame and being really active in getting that team mentality to work, it takes investment from both sides, but it's definitely possible.
Good luck, I feel for you.
posted by smoke at 3:33 AM on August 21, 2012 [4 favorites]
This is a really difficult one, because doctors do make mistakes and give people the wrong medication, but patients also make mistakes and imagine that they will definitely experience all the listed side effects and can't afford to take any risks. For example, you may be right that you will not be able to take any SSRIs or SNRIs because of your RLS, but you may also be wrong - my interpretation of the literature is that there is a risk it will be exacerbated by any one medication, but it is not an absolute certainty if you have not tried that medication. A good doctor should be able to listen to you when you say 'I am concerned about taking medication X because of Y', and should take that information into account, but a good doctor should also sometimes say 'I think nonetheless it is worth giving Y a try, and here's why.' When these things go wrong, they are frustrating for the patient, who can feel like they are not being heard and their own knowledge about their condition is being dismissed in an offhand manner. But they can also be frustrating for the doctor, because it can seem like the patient is saying 'I want you to make me better, but I am not willing to take any risk that you will make me worse'. Because ultimately there is always going to be some risk that a given medication will not work, and all medications have side effects, and if you have tried a lot of different things that is often when you will start trying the things with a greater risk of side effects.
Another thing that's important to bear in mind here is the nocebo effect, which is a very thing that's just as real as the placebo effect. Basically, if you believe that something is going to harm you, it is much more likely to do so. So I know this is difficult, but try to bear in mind that if you start a new medication sure that it is going to exacerbate your other conditions and give you every listed side effect, it is more likely to do so than if you approach it thinking 'well, I can't possibly be sure that this will happen, and my feelings of being sure don't come from a 100% rational place'. I say this not because I want to dismiss your fears, but because it is not completely rational to feel sure under those circumstances. It's a completely normal thing, because the human mind isn't good at dealing with uncertainty, but it isn't based entirely in reality and it may actually be hurting you here.
I would still be inclined to suggest you get a different doctor, because this one isn't managing the communication very well and doesn't seem to be listening to you very much at all. But I would also be wary of too much doctor-shopping until you find one who agrees with you completely. You want them to push back a bit, it's part of their job.
posted by Acheman at 3:36 AM on August 21, 2012 [27 favorites]
Another thing that's important to bear in mind here is the nocebo effect, which is a very thing that's just as real as the placebo effect. Basically, if you believe that something is going to harm you, it is much more likely to do so. So I know this is difficult, but try to bear in mind that if you start a new medication sure that it is going to exacerbate your other conditions and give you every listed side effect, it is more likely to do so than if you approach it thinking 'well, I can't possibly be sure that this will happen, and my feelings of being sure don't come from a 100% rational place'. I say this not because I want to dismiss your fears, but because it is not completely rational to feel sure under those circumstances. It's a completely normal thing, because the human mind isn't good at dealing with uncertainty, but it isn't based entirely in reality and it may actually be hurting you here.
I would still be inclined to suggest you get a different doctor, because this one isn't managing the communication very well and doesn't seem to be listening to you very much at all. But I would also be wary of too much doctor-shopping until you find one who agrees with you completely. You want them to push back a bit, it's part of their job.
posted by Acheman at 3:36 AM on August 21, 2012 [27 favorites]
A couple of members of my family have found nurse practitioners more open to this kind of conversation than their doctors were. They may just have been lucky in the nurses they found, however.
posted by Francolin at 4:56 AM on August 21, 2012 [1 favorite]
posted by Francolin at 4:56 AM on August 21, 2012 [1 favorite]
You should talk to a pharmacist at some point and ask him/her questions about contraindications.
posted by discopolo at 5:22 AM on August 21, 2012 [2 favorites]
posted by discopolo at 5:22 AM on August 21, 2012 [2 favorites]
Best answer: I've mentioned before that I usually pick D.O.s, who go to school for an extra year. Additionally, my specialists are usually D.O.s as well. My PCP is a PA of one stripe or another (Florida apparently has several levels and he's got like four or five letters after his name now) but under the 'guidance' of the DO - but I don't think I've seen her in years. But the PA listens, goes over my concerns and expresses his own, and we figure out what will work/do least harm. Lucked out, but also intentionally started with a small pool of candidates.
And keep your own records. I have most of my old records and relevant tests (I have a couple of things that go off the charts into the red zone at an interval we've not yet determined). When one doc freaks about it, the PA takes a look, figures out if it's in the norm, and does more tests (or not) as needed.
posted by tilde at 6:02 AM on August 21, 2012
And keep your own records. I have most of my old records and relevant tests (I have a couple of things that go off the charts into the red zone at an interval we've not yet determined). When one doc freaks about it, the PA takes a look, figures out if it's in the norm, and does more tests (or not) as needed.
posted by tilde at 6:02 AM on August 21, 2012
I absolutely agree with Acheman. Also... I'm just throwing this out there and it may not be the case, but since you mentioned chronic pain and fibromyalgia, I am giving you my guess that your doctors have exhausted every non-narcotic option for pain treatment aside from options like this.
Most doctors, including me, would rather try any non-narcotic option in a person with chronic pain/fibromyalgia than put them on an addictive substance because of the raft of complications and challenges (and frankly, terrible things for both the doctor and the patient) that can result from long term narcotic use. I don't know if this is the case for you or if you are on narcotics and he is trying to keep from increasing the dose, or what, but I would strongly encourage you to consider trying a medication that may have side effects and at least give it a shot if your only other option is narcotics. Also, for chronic pain alternative therapies are something that we doctors are not very well schooled in, but that have given relief to many people. If you're running out of meds to try, I hope you've considered looking into complementary and alternative medical practices.
posted by treehorn+bunny at 6:03 AM on August 21, 2012 [2 favorites]
Most doctors, including me, would rather try any non-narcotic option in a person with chronic pain/fibromyalgia than put them on an addictive substance because of the raft of complications and challenges (and frankly, terrible things for both the doctor and the patient) that can result from long term narcotic use. I don't know if this is the case for you or if you are on narcotics and he is trying to keep from increasing the dose, or what, but I would strongly encourage you to consider trying a medication that may have side effects and at least give it a shot if your only other option is narcotics. Also, for chronic pain alternative therapies are something that we doctors are not very well schooled in, but that have given relief to many people. If you're running out of meds to try, I hope you've considered looking into complementary and alternative medical practices.
posted by treehorn+bunny at 6:03 AM on August 21, 2012 [2 favorites]
Best answer: It's really difficult to get chronic pain conditions under control, and I really feel for you. I'm going to tell you how doctors, who don't know you very well, may be interpreting your actions. I'm not attacking or doubting you, but I want to make sure you see the other side.
I'd reiterate a lot of what Acheman said, especially about the "nocebo" effect. If you're convinced you're going to get all the side effects, it's a lot more likely that you will.
Anyway. One of my good friends is a GP who works with a somewhat difficult population, who's off on maternity leave so I was chatting with her about your question. Basically, her concerns would be, 1) This patient is med-seeking for opiates (chronic pain condition with self-reported symptoms, refuses all drugs as "not having worked" in the past); 2) Probably a malingerer (doesn't follow doctor instructions, especially about non-med therapies); 3) Already refusing all diagnoses and therapies (and can "guarantee" they won't work), so will end up frustrated and upset no matter what I try; 4) Drugs having "opposite" effects suggests it might be psychosomatic, but patients with these attitudes typically resist a psychiatric explanation and move on to a new doctor instead. She says those might not be fair concerns, but those are the snap judgments she thinks many doctors will make.
We thought your best bet was probably to pick the doctor you're working with now that you like best, and ask for an hour-long appointment. Explain you're frustrated, you know the doctor's probably frustrated, and you'd like to start again with someone who will spearhead your care and help you find a solution or at least a management plan. That may mean trying some drugs again. It may mean seeing a psychiatrist, since depression is common in chronic pain patients and can exacerbate it.
With a chronic pain condition PLUS other problems (heart, etc.), you definitely need strongly-coordinated care and someone to spearhead that care, at least until you get a plan in place. It may be helpful to talk to a hospital ombudsman or social worker to find out how best to arrange that, depending on your hospital. (Integrating care is a thing these days, but there aren't always the best structures in place to make it happen.)
posted by Eyebrows McGee at 6:09 AM on August 21, 2012 [11 favorites]
I'd reiterate a lot of what Acheman said, especially about the "nocebo" effect. If you're convinced you're going to get all the side effects, it's a lot more likely that you will.
Anyway. One of my good friends is a GP who works with a somewhat difficult population, who's off on maternity leave so I was chatting with her about your question. Basically, her concerns would be, 1) This patient is med-seeking for opiates (chronic pain condition with self-reported symptoms, refuses all drugs as "not having worked" in the past); 2) Probably a malingerer (doesn't follow doctor instructions, especially about non-med therapies); 3) Already refusing all diagnoses and therapies (and can "guarantee" they won't work), so will end up frustrated and upset no matter what I try; 4) Drugs having "opposite" effects suggests it might be psychosomatic, but patients with these attitudes typically resist a psychiatric explanation and move on to a new doctor instead. She says those might not be fair concerns, but those are the snap judgments she thinks many doctors will make.
We thought your best bet was probably to pick the doctor you're working with now that you like best, and ask for an hour-long appointment. Explain you're frustrated, you know the doctor's probably frustrated, and you'd like to start again with someone who will spearhead your care and help you find a solution or at least a management plan. That may mean trying some drugs again. It may mean seeing a psychiatrist, since depression is common in chronic pain patients and can exacerbate it.
With a chronic pain condition PLUS other problems (heart, etc.), you definitely need strongly-coordinated care and someone to spearhead that care, at least until you get a plan in place. It may be helpful to talk to a hospital ombudsman or social worker to find out how best to arrange that, depending on your hospital. (Integrating care is a thing these days, but there aren't always the best structures in place to make it happen.)
posted by Eyebrows McGee at 6:09 AM on August 21, 2012 [11 favorites]
Chronic pain and fatigue is very hard to diagnose and treat, and you're absolutely right that Doctors' frustration at their inability to fix these problems sometimes gets misplaced onto the patient.
But, if you are looking for someone to listen to you, take you seriously, and be willing to consider alternatives, you have to be willing for it to be a two-way street. You say "if I do [take the med], I'm going to have all the side effects as I predicted and we'll be back to where I said we'd be." But you can't possibly know that. You're going to have ALL the side effects you've predicted from a medication you haven't taken before? It seems like you've made up your mind and aren't willing to listen to other possibilities. For instance, Dr. A told you this type of med is contra-indicated, and now Dr. B is telling you it might be OK. You think Dr. A is absolutely right and Dr. B is wrong, but why? Couldn't it just as easily be the other way around? It seems like you are asking for a Doctor who will listen and believe you when your research and experience suggests something will fail - while you refuse to believe anything that the Dr.'s research and experience suggests will succeed. A therapeutic partnership has to go both ways.
posted by Ausamor at 6:13 AM on August 21, 2012 [1 favorite]
But, if you are looking for someone to listen to you, take you seriously, and be willing to consider alternatives, you have to be willing for it to be a two-way street. You say "if I do [take the med], I'm going to have all the side effects as I predicted and we'll be back to where I said we'd be." But you can't possibly know that. You're going to have ALL the side effects you've predicted from a medication you haven't taken before? It seems like you've made up your mind and aren't willing to listen to other possibilities. For instance, Dr. A told you this type of med is contra-indicated, and now Dr. B is telling you it might be OK. You think Dr. A is absolutely right and Dr. B is wrong, but why? Couldn't it just as easily be the other way around? It seems like you are asking for a Doctor who will listen and believe you when your research and experience suggests something will fail - while you refuse to believe anything that the Dr.'s research and experience suggests will succeed. A therapeutic partnership has to go both ways.
posted by Ausamor at 6:13 AM on August 21, 2012 [1 favorite]
I've been seeing a lot of doctors
Therein lies the problem. Nthing the D.O. recommendation.
My best last doctor (moved since then) was a D.O. and the nurse practitioners were all pretty good, with the exception of one. She wasn't bad, but I preferred my doctor, who listened and was very forthright and honest with me. Didn't mind me asking questions or telling her that I tended to get bad side effects from certain drugs and some of my reactions seem to run in my family (i.e. allergic reactions to certain BP drugs, like rashes and my throat closing up).
If I were in chronic pain with fatigue, I'd be looking for someone who specializes in treating those things, because it could be anything from a Vitamin D deficiency to fibromyalgia or goodness knows what. I'd be asking for a referral to an endocrinologist who specializes in chronic fatigue and pain, instead of seeing generalist after generalist whose specialty may not be in that realm of expertise.
I'd also carry my records around with me, unless it's all in the same practice and they can call up your records and say, "oh yeah, you're right, Dr. A did say that this drug is not a good choice, let's find another solution." Because I've had a NP say, "I'm writing you a 'scrip for this," and it was something I'd already taken 3 months prior with nasty side effects, and I had to point it out to her, even though she had my records right there in front of her on the computer. That didn't make her bad, it just made her human. You have to be an advocate for your health treatment, and perhaps having a specialist look after you and coordinating with other docs (such as the cardiologist) would help.
posted by Marie Mon Dieu at 7:09 AM on August 21, 2012
Therein lies the problem. Nthing the D.O. recommendation.
My best last doctor (moved since then) was a D.O. and the nurse practitioners were all pretty good, with the exception of one. She wasn't bad, but I preferred my doctor, who listened and was very forthright and honest with me. Didn't mind me asking questions or telling her that I tended to get bad side effects from certain drugs and some of my reactions seem to run in my family (i.e. allergic reactions to certain BP drugs, like rashes and my throat closing up).
If I were in chronic pain with fatigue, I'd be looking for someone who specializes in treating those things, because it could be anything from a Vitamin D deficiency to fibromyalgia or goodness knows what. I'd be asking for a referral to an endocrinologist who specializes in chronic fatigue and pain, instead of seeing generalist after generalist whose specialty may not be in that realm of expertise.
I'd also carry my records around with me, unless it's all in the same practice and they can call up your records and say, "oh yeah, you're right, Dr. A did say that this drug is not a good choice, let's find another solution." Because I've had a NP say, "I'm writing you a 'scrip for this," and it was something I'd already taken 3 months prior with nasty side effects, and I had to point it out to her, even though she had my records right there in front of her on the computer. That didn't make her bad, it just made her human. You have to be an advocate for your health treatment, and perhaps having a specialist look after you and coordinating with other docs (such as the cardiologist) would help.
posted by Marie Mon Dieu at 7:09 AM on August 21, 2012
Something that may be worth your time and help communicate your concerns and experiences with medications to your doctor is to sit down and compose a chronology of what medicines you have taken, when and for how long you took them, what the prescribed dosage was and what your experienced benefits/side effects were. Assign a "ranking" to the benefits/side effects on a scale of 0-10 if you can, and provide objective measurements where possible.
If you have this prepared in advance then you won't be "under the emotional gun" to recall what medicines you have tried previously and why a certain medicine is not a good treatment for you while under the time pressure of the 10 minutes or so you get to spend with the doctor.
Example (I'm making this up, obviously):
Savella - Taken 7/1/15 through 7/8/15, 50mg tablet daily.
Benefits - Perceived reduction in pain - 2 out of 10 (mild decrease in pain)
Side Effects - Restless Leg Syndrom, 8 out of 10 (severe RLS, twitchy and had trouble falling asleep most nights)
- Hypertension, 7 out of 10 (averaged BP 170/110 while taking Savella)
- Increased Heart Rate, 6 out of 10 (resting HR of 80 while taking Savella)
If you could hand something like this to your doctor, it may help clarify to him that: you have been trying to treat your condition for a while with different drugs; yes, you have tried a certain drug before; no, it is *not* a treatment you're willing to continue or try again because you previously experienced no benefit, or it was outweighed by the side effects.
posted by de void at 7:29 AM on August 21, 2012 [4 favorites]
If you have this prepared in advance then you won't be "under the emotional gun" to recall what medicines you have tried previously and why a certain medicine is not a good treatment for you while under the time pressure of the 10 minutes or so you get to spend with the doctor.
Example (I'm making this up, obviously):
Savella - Taken 7/1/15 through 7/8/15, 50mg tablet daily.
Benefits - Perceived reduction in pain - 2 out of 10 (mild decrease in pain)
Side Effects - Restless Leg Syndrom, 8 out of 10 (severe RLS, twitchy and had trouble falling asleep most nights)
- Hypertension, 7 out of 10 (averaged BP 170/110 while taking Savella)
- Increased Heart Rate, 6 out of 10 (resting HR of 80 while taking Savella)
If you could hand something like this to your doctor, it may help clarify to him that: you have been trying to treat your condition for a while with different drugs; yes, you have tried a certain drug before; no, it is *not* a treatment you're willing to continue or try again because you previously experienced no benefit, or it was outweighed by the side effects.
posted by de void at 7:29 AM on August 21, 2012 [4 favorites]
Duh, the dates in the example above should be 7/1/12 through 7/8/12.
posted by de void at 7:46 AM on August 21, 2012
posted by de void at 7:46 AM on August 21, 2012
Really, unless you're absolutely determined to use this doctor... Find someone else. I've switched primary care physicians three times in the last two years because the first three didn't believe that what I was saying about my own body could possibly trump the degree hanging on their wall.
If your doctor won't listen, he won't listen, and if he (or worse, his staff) think of you as a "difficult patient" they may try to manipulate you into taking things without being "difficult" about it. My best advice would be not to try to change your doctor's mind, but just find someone who is willing to accept that you are not a complete ignoramus when it comes to your health and the medications you need.
posted by Urban Winter at 8:19 AM on August 21, 2012
If your doctor won't listen, he won't listen, and if he (or worse, his staff) think of you as a "difficult patient" they may try to manipulate you into taking things without being "difficult" about it. My best advice would be not to try to change your doctor's mind, but just find someone who is willing to accept that you are not a complete ignoramus when it comes to your health and the medications you need.
posted by Urban Winter at 8:19 AM on August 21, 2012
Seconding de void's recommendation for keeping detailed records. If you can come in with your own chart and history of every drug you've tried and its effects, a good doctor will love you. Trying to navigate that kind of thing verbally as a back and forth conversation during an appointment is super frustrating for everyone involved.
posted by the jam at 9:11 AM on August 21, 2012
posted by the jam at 9:11 AM on August 21, 2012
Nthing find new doctors.
How about, one week from now, you ask another AskMefi question that says, "What recommendations do you have for doctors to treat chronic pain and fatigue, which may or may not be fibromyalgia?"
posted by kellybird at 9:44 AM on August 21, 2012 [1 favorite]
How about, one week from now, you ask another AskMefi question that says, "What recommendations do you have for doctors to treat chronic pain and fatigue, which may or may not be fibromyalgia?"
posted by kellybird at 9:44 AM on August 21, 2012 [1 favorite]
IMO it will be difficult for you to find any doctor who doesn't think he knows better than you on some occasion. After all, that's why they go to medical school.
That said, if you are uncomfortable taking a medication, don't take it. Say 'I'm not going to do that. What alternatives are there?'. Repeat as necessary (and it will be).
posted by bq at 10:06 AM on August 21, 2012 [1 favorite]
That said, if you are uncomfortable taking a medication, don't take it. Say 'I'm not going to do that. What alternatives are there?'. Repeat as necessary (and it will be).
posted by bq at 10:06 AM on August 21, 2012 [1 favorite]
In this specific case, since the doctor who said not to take SNRIs (?) works at the same practice I would ask the rheumatologist to talk with that other doctor or maybe even try to schedule a joint appointment if such a thing is possible.
Beyond that, one way to deal with getting emotional is to plan out your responses ahead of time. Plan out some kind of script, along the lines of "Okay, Savella. I see that's a ____ and might exacerbate the ____ and ____ that I already experience. I know that every medication has side effects and that it's not guaranteed that I will experience any problems with Savella. However, I'd like to go over any other treatment options you're aware of, and to figure out together if there's another place to start. Can we put together a list or other medications or treatments used to address fibromyalgia?"
Then, anticipate the responses you're likely to get. E.g. if a doctor says "Eh, we don't have time for this, I really think you should try ____", say "I understand that. However, it is very important for me to feel that my doctor is working together with me and that my concerns are taken seriously. I know that there are many options for treating fibromyalgia, and I would really like to understand more about the different options and why you would recommend for or against them. Let's figure out now if we can work together in this way, or if you think we're not a good fit as doctor and patient." And so on. Try to plan for best and worst case scenarios ahead of time, so that you can deliver your responses calmly and convey what you want to convey.
Seconding the advice to keep records on your responses to any treatment.
posted by mail at 1:29 PM on August 21, 2012 [1 favorite]
Beyond that, one way to deal with getting emotional is to plan out your responses ahead of time. Plan out some kind of script, along the lines of "Okay, Savella. I see that's a ____ and might exacerbate the ____ and ____ that I already experience. I know that every medication has side effects and that it's not guaranteed that I will experience any problems with Savella. However, I'd like to go over any other treatment options you're aware of, and to figure out together if there's another place to start. Can we put together a list or other medications or treatments used to address fibromyalgia?"
Then, anticipate the responses you're likely to get. E.g. if a doctor says "Eh, we don't have time for this, I really think you should try ____", say "I understand that. However, it is very important for me to feel that my doctor is working together with me and that my concerns are taken seriously. I know that there are many options for treating fibromyalgia, and I would really like to understand more about the different options and why you would recommend for or against them. Let's figure out now if we can work together in this way, or if you think we're not a good fit as doctor and patient." And so on. Try to plan for best and worst case scenarios ahead of time, so that you can deliver your responses calmly and convey what you want to convey.
Seconding the advice to keep records on your responses to any treatment.
posted by mail at 1:29 PM on August 21, 2012 [1 favorite]
One thing I learned today during my annual physical with my GP is that I can request a specialist call her to discuss possible medication interactions. In my case, she recommended that I bring up a daily pain/depression med with my new pain management doctor. If they thought that was a viable option, they should call her to discuss my current depression meds and what changes I'd need there. I had just hadn't thought of this before.
I've got a new pain management guy because an interaction this week with my old guy was the proverbial straw that broke the poor camel's back. He had prescribed something new for my back pain. I hadn't heard of it before, so I did some research and found the new drug was contraindicated for people on another medicine, which I am. I promptly called the doctor back and asked if this was an issue, not wanting to sound like I was saying, "OMG the internet told me I'll die!" His reply was, "Oops, I forgot you were taking that other drug." Could he have told me about the potential benefits outweighing the risks? Sure, and I would have listened. But it seemed clear to me that he just wasn't paying attention.
Doctors can make mistakes and it's your right to be able to question their plans for your treatment and have an open discussion about your options. If you need help explaining all of your concerns without getting overly emotional, try writing a list to bring to your next appointment. Go over it in your head or out loud when you're alone so when you get to your appointment you'll feel more confident. It's also ok to tell your doctor, "it's nothing personal, I'm just really frustrated." Doing this helps me take a bit of the weight off my shoulders so we can go on discussing things honestly.
Good luck. Chronic pain sucks hardcore.
posted by youngergirl44 at 8:44 PM on August 21, 2012
I've got a new pain management guy because an interaction this week with my old guy was the proverbial straw that broke the poor camel's back. He had prescribed something new for my back pain. I hadn't heard of it before, so I did some research and found the new drug was contraindicated for people on another medicine, which I am. I promptly called the doctor back and asked if this was an issue, not wanting to sound like I was saying, "OMG the internet told me I'll die!" His reply was, "Oops, I forgot you were taking that other drug." Could he have told me about the potential benefits outweighing the risks? Sure, and I would have listened. But it seemed clear to me that he just wasn't paying attention.
Doctors can make mistakes and it's your right to be able to question their plans for your treatment and have an open discussion about your options. If you need help explaining all of your concerns without getting overly emotional, try writing a list to bring to your next appointment. Go over it in your head or out loud when you're alone so when you get to your appointment you'll feel more confident. It's also ok to tell your doctor, "it's nothing personal, I'm just really frustrated." Doing this helps me take a bit of the weight off my shoulders so we can go on discussing things honestly.
Good luck. Chronic pain sucks hardcore.
posted by youngergirl44 at 8:44 PM on August 21, 2012
Response by poster: Thanks everyone for your thoughtful replies. I called and left a message about my concerns, and haven't heard back (though I did call later in the afternoon, so the Dr. may not have gotten a chance). He was on the fence during our appointment yesterday between Lyrica and Savella, so I also suggested I'd rather try Lyrica first.
As I reflected on what you all wrote, I realized of my frustration stemmed from this doctor saying dismissive things about both the sleep doctor I see (and that RLS isn't 'real') as well as the pain doctors I have an appointment with. I was also irritated that he was willing to diagnose it as fibromyalgia, because in his words, "since we can't find anything else." Meanwhile the pain doctor I consulted with felt there was more to look at and ordered an MRI a week earlier. I would not be surprised if it is fibromyalgia, but this waste-basket diagnosis, combined with the doctor's dismissal of my concerns AND of other doctors concerns and abilities doubly made me doubt his judgement on something that I question. I may need a rheumatologist, but I don't think one that is willing to be so dismissive of my history, treatment or other doctors is the right one.
I do have a primary care doctor/quarterback that has been pretty good at coordinating things, but I've not thought to talk with her when I get confusing medication recommendations. That may be the next area I go now that it's been suggested. I just never thought of going to her to say "Hey, this doctor says this and I'm uncomfortable with that, what do you think?" Same with requesting a coordinating phone call with specialists.
Oh, and I have no doubt the doctor knows more than me, that was poor wording on my part. I just wish he had taken into consideration other doctors' areas of expertise, i.e. medications that are likely to aggravate restless leg syndrome as well as my history i.e. a medication in that class of drugs was already tried and aggravated my restless leg syndrome.
posted by [insert clever name here] at 9:53 PM on August 21, 2012
As I reflected on what you all wrote, I realized of my frustration stemmed from this doctor saying dismissive things about both the sleep doctor I see (and that RLS isn't 'real') as well as the pain doctors I have an appointment with. I was also irritated that he was willing to diagnose it as fibromyalgia, because in his words, "since we can't find anything else." Meanwhile the pain doctor I consulted with felt there was more to look at and ordered an MRI a week earlier. I would not be surprised if it is fibromyalgia, but this waste-basket diagnosis, combined with the doctor's dismissal of my concerns AND of other doctors concerns and abilities doubly made me doubt his judgement on something that I question. I may need a rheumatologist, but I don't think one that is willing to be so dismissive of my history, treatment or other doctors is the right one.
I do have a primary care doctor/quarterback that has been pretty good at coordinating things, but I've not thought to talk with her when I get confusing medication recommendations. That may be the next area I go now that it's been suggested. I just never thought of going to her to say "Hey, this doctor says this and I'm uncomfortable with that, what do you think?" Same with requesting a coordinating phone call with specialists.
Oh, and I have no doubt the doctor knows more than me, that was poor wording on my part. I just wish he had taken into consideration other doctors' areas of expertise, i.e. medications that are likely to aggravate restless leg syndrome as well as my history i.e. a medication in that class of drugs was already tried and aggravated my restless leg syndrome.
posted by [insert clever name here] at 9:53 PM on August 21, 2012
Response by poster: Eyebrows McGee, you've given me some things to think about. Good things. What I'm struggling with now is that I'm just really sensitive to medication, and seem to have a lot of paradoxal reactions to medication too. A blood pressure medication sent me to the emergency room a few months back because it raised my blood pressure and heart rate. It runs in the family, my mom is extremely sensitive to medications too, as is her mother. (Perhaps ironically, my sister and father are the exact opposite, they usually need more than a standard dose of anything to work and have to fight with doctors to get enough painkillers to make a dent. Dentist trips were a nightmare for my sister, because they never believed her that the Novocain wasn't working.)
With that in mind, assume it's not psychosomatic ('cuz, it's not, I actually saw a therapist because I was struggling with the whole "is it all in my head?" questions). How does one not come off as a drug seeker or a malingerer when you've got a host of unsolved problems and problematic reactions to drugs? I'm not able to tolerate narcotics very well at all, most make me feel worse and cause nausea that requires medications to combate (I've had to struggle with them when I've had surgery a couple years ago. Unrelated issue.). The only on that sort of has worked is tylenol 3, and even that is problematic, giving me insomnia so I can only take a small amount within a certain window. And because it just makes me so fuzzy and out of touch, I don't take it every day, only when the pain threshold is bad enough that I 'have to' (usually when the pain gets bad enough to make me cry). Anyway, I can't really take narcotics except tylenol 3; a 30 day supply has lasted me 3+ months. But I don't know if that matters since there are other drugs that someone could be after, and it probably doesn't mean anything if a doctor thinks you're malingering or it's all in your head. I want to avoid that because that is going to complicate me getting proper care.
posted by [insert clever name here] at 10:19 PM on August 21, 2012
With that in mind, assume it's not psychosomatic ('cuz, it's not, I actually saw a therapist because I was struggling with the whole "is it all in my head?" questions). How does one not come off as a drug seeker or a malingerer when you've got a host of unsolved problems and problematic reactions to drugs? I'm not able to tolerate narcotics very well at all, most make me feel worse and cause nausea that requires medications to combate (I've had to struggle with them when I've had surgery a couple years ago. Unrelated issue.). The only on that sort of has worked is tylenol 3, and even that is problematic, giving me insomnia so I can only take a small amount within a certain window. And because it just makes me so fuzzy and out of touch, I don't take it every day, only when the pain threshold is bad enough that I 'have to' (usually when the pain gets bad enough to make me cry). Anyway, I can't really take narcotics except tylenol 3; a 30 day supply has lasted me 3+ months. But I don't know if that matters since there are other drugs that someone could be after, and it probably doesn't mean anything if a doctor thinks you're malingering or it's all in your head. I want to avoid that because that is going to complicate me getting proper care.
posted by [insert clever name here] at 10:19 PM on August 21, 2012
Most of, if not all of, my specialists are recommended by my PCP office. Their coordination (being down the hall) is .... good enough.
When I have to, I walk things between offices.
I always coordinate my appointments to be within a few hours of each other (first specialist(s), then PCP to wrap up what's going on with the specialists so the PA can order any extra tests the SP didn't cover if needed). The SPs always hear what's going on in their specialty, and if I have general life things going on I'm going to discuss with PCP (asthma, headaches, broken finger) I give the SP a heads up. And reverse, PCP knows what and why things I'm doing for SP, and that I told SP what is going on that PCP and I are working on.
Sometimes I get frustrated with my SPs, but I also do a lot of reading on how other people respond to meds / are treated for similar goings on, and I know his bedside manner may suck but he will take correction (like duh, I asked three times for my quarterly lab scrip) or guidance from my PCP on general things.
posted by tilde at 5:54 AM on August 22, 2012
When I have to, I walk things between offices.
I always coordinate my appointments to be within a few hours of each other (first specialist(s), then PCP to wrap up what's going on with the specialists so the PA can order any extra tests the SP didn't cover if needed). The SPs always hear what's going on in their specialty, and if I have general life things going on I'm going to discuss with PCP (asthma, headaches, broken finger) I give the SP a heads up. And reverse, PCP knows what and why things I'm doing for SP, and that I told SP what is going on that PCP and I are working on.
Sometimes I get frustrated with my SPs, but I also do a lot of reading on how other people respond to meds / are treated for similar goings on, and I know his bedside manner may suck but he will take correction (like duh, I asked three times for my quarterly lab scrip) or guidance from my PCP on general things.
posted by tilde at 5:54 AM on August 22, 2012
Best answer: "How does one not come off as a drug seeker or a malingerer when you've got a host of unsolved problems and problematic reactions to drugs?"
I think the key is developing a good relationship with your point person -- sounds like your GP is pretty good (the rheumatologist sounds like a dud). When your doctor knows you, they won't be making those snap assumptions. That's why it's also helpful to have one person able to coordinate care. (I don't know how typical it is, but my GP's office calls to make referrals and appointments FOR me, and will often explain any special circumstances when they do -- I had to see a specialist when I was pregnant, for example, and when I got there the specialist came in like, "Okay, I talked to your GP and your ob, and it sounds like we really need to get this problem solved for you, but without [usual medications which aren't safe during pregnancy]! I understand you also have a toddler so bedrest would be a last resort. So let's see what we can do.")
The other thing is that even other people in the practice aren't YOUR doctor. I had a go-round with my doctor's nurse about the same situation, where because I was pregnant I ended up with a non-standard prescription, and when I went to refill it, the nurse assumed I was med-seeking because it was "too soon" for a standard-prescription refill and kept rejecting my refill. Super-aggravating. As soon as I talked to my DOCTOR it was fine, but the nurse was very diligently gate-keeping my doctor.
The other thing my friend says is that a lot of pain patients aren't very diligent about non-drug therapies -- because they're in pain! Things are hard! But she may have a patient with chronic pain where losing ten pounds and doing regular yoga/tai chi/physical therapy/something will help far more than the drugs, but the time investment of exercising and watching diet is much more difficult to sustain than taking a pill every day. She says if there are non-drug therapies you're supposed to be doing, do them diligently -- it helps you, and it shows the doctor you're an active partner in your own care.
And people totally do react differently to drugs. Anyone who's had kids can tell you you give some kids Benadryl, they go right to sleep. You give other kids Benadryl, they bounce off the walls for six hours. But keep in mind drugs may give you different reactions at different times (you may be taking different other drugs, etc.) and may be worth a second try. Ask your doctor what she thinks about different ways to try to manage side effects and interactions -- a hospital or compounding pharmacy may have a pharmacist who can consult with you more thoroughly, for example.
posted by Eyebrows McGee at 7:30 AM on August 22, 2012
I think the key is developing a good relationship with your point person -- sounds like your GP is pretty good (the rheumatologist sounds like a dud). When your doctor knows you, they won't be making those snap assumptions. That's why it's also helpful to have one person able to coordinate care. (I don't know how typical it is, but my GP's office calls to make referrals and appointments FOR me, and will often explain any special circumstances when they do -- I had to see a specialist when I was pregnant, for example, and when I got there the specialist came in like, "Okay, I talked to your GP and your ob, and it sounds like we really need to get this problem solved for you, but without [usual medications which aren't safe during pregnancy]! I understand you also have a toddler so bedrest would be a last resort. So let's see what we can do.")
The other thing is that even other people in the practice aren't YOUR doctor. I had a go-round with my doctor's nurse about the same situation, where because I was pregnant I ended up with a non-standard prescription, and when I went to refill it, the nurse assumed I was med-seeking because it was "too soon" for a standard-prescription refill and kept rejecting my refill. Super-aggravating. As soon as I talked to my DOCTOR it was fine, but the nurse was very diligently gate-keeping my doctor.
The other thing my friend says is that a lot of pain patients aren't very diligent about non-drug therapies -- because they're in pain! Things are hard! But she may have a patient with chronic pain where losing ten pounds and doing regular yoga/tai chi/physical therapy/something will help far more than the drugs, but the time investment of exercising and watching diet is much more difficult to sustain than taking a pill every day. She says if there are non-drug therapies you're supposed to be doing, do them diligently -- it helps you, and it shows the doctor you're an active partner in your own care.
And people totally do react differently to drugs. Anyone who's had kids can tell you you give some kids Benadryl, they go right to sleep. You give other kids Benadryl, they bounce off the walls for six hours. But keep in mind drugs may give you different reactions at different times (you may be taking different other drugs, etc.) and may be worth a second try. Ask your doctor what she thinks about different ways to try to manage side effects and interactions -- a hospital or compounding pharmacy may have a pharmacist who can consult with you more thoroughly, for example.
posted by Eyebrows McGee at 7:30 AM on August 22, 2012
Sorry - I didn't mean that 'knows better' as a crack at you, but at doctors who don't listen.
posted by bq at 12:43 PM on August 22, 2012
posted by bq at 12:43 PM on August 22, 2012
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I sympathize- I have a family member who has had difficult to diagnose, extremely rare diseases for much of the last decade (including a brain tumor that was recently diagnosed after years of symptoms/pain by the Mayo clinic). There are plenty of doctors out there that are following the flow charts they learned in medical school. When they get to the end of the flow chart, having tried all the branches, they are stymied. Rather than blame their lack of creativity or experience with rare diseases, they may take it out on you, the patient.
So, look for two things: 1) Doctors who are good communicators. This means not only that they can articulate themselves (that can be a problem, too, particularly with some specialists who are more comfortable with charts than people), but crucially they talk openly with you, treating you as a partner rather than a subject in your wellness process.
2) Doctors that are very experienced with your particular subset of symptoms and/or are creative thinkers accustomed to thinking beyond the normal diagnostic box that 95% of their patients fall into.
Extra bonus points for doctors who are willing to interact with each other. I've found this to be rare to non-existent, with the exception of some PCPs who will call specialists. Specialists just don't like talking to other specialists, so getting them to devise treatment mechanisms together is nearly impossible.
How do you find them? Trial and error. Don't blame yourself. Keep copious records, and fire doctors whenever they don't meet your needs. Good luck, and I hope you feel better soon.
posted by arnicae at 10:36 PM on August 20, 2012 [9 favorites]