This stoic mask of mine is giving me grief.
July 14, 2012 5:23 PM Subscribe
I don't show pain very well (if at all), and this leads to problems with doctors. But if I try to show how much pain I'm in, it comes off as false and that leads to different difficulties.
So, I finally got an appointment with a primary car physician last week, and as suggested in this post, I brought a list of things I've been diagnosed with over the years as well as previous hospitalizations, operations, and all medications I'm taking now, have taken in the past, and what I'm allergic to. Well, she took a look at my laundry list of diagnoses and promptly became skeptical. She suggested that the diagnoses are "generalized" and most likely wrong (see previous post for list of diagnoses). I was so tired that day, and in too much of a pain fog to even counter her or ask why she thought that.
And that's part of the problem. She didn't recognize that I was tired despite my disjointed speech, or how much in pain I was in despite how slow I moved. I get it, I don't show pain. She's not familiar with me, so I understand why she didn't recognize that I was in pain. However, when I mentioned that I was, in fact, in quite a bit of pain, she said, "Really? What hurts?" in an incredulous voice. I explained that my knees hurt, my back hurt, and my head hurt, on a 1 - 10 scale, I put it at around a 7, which is par for the course. To which she replied, "I don't prescribe narcotics." *sigh* I told her I don't take narcotics or any other pain pills (for various reasons). I'm just in pain. It's an everyday fact of life.
So, my question is. If I don't show pain well, how can I get across to a doctor who doesn't know me that I am, indeed, in a great deal of pain? This is not the first time I've run across this problem. I've tried "showing" my pain, but was accused outright of "seeking attention" by a doctor, or like this doctor, they think I'm after drugs. I'm truly at a loss here. Honestly, it's experiences like these that make me want to give up on going to the doctor altogether.
So, I finally got an appointment with a primary car physician last week, and as suggested in this post, I brought a list of things I've been diagnosed with over the years as well as previous hospitalizations, operations, and all medications I'm taking now, have taken in the past, and what I'm allergic to. Well, she took a look at my laundry list of diagnoses and promptly became skeptical. She suggested that the diagnoses are "generalized" and most likely wrong (see previous post for list of diagnoses). I was so tired that day, and in too much of a pain fog to even counter her or ask why she thought that.
And that's part of the problem. She didn't recognize that I was tired despite my disjointed speech, or how much in pain I was in despite how slow I moved. I get it, I don't show pain. She's not familiar with me, so I understand why she didn't recognize that I was in pain. However, when I mentioned that I was, in fact, in quite a bit of pain, she said, "Really? What hurts?" in an incredulous voice. I explained that my knees hurt, my back hurt, and my head hurt, on a 1 - 10 scale, I put it at around a 7, which is par for the course. To which she replied, "I don't prescribe narcotics." *sigh* I told her I don't take narcotics or any other pain pills (for various reasons). I'm just in pain. It's an everyday fact of life.
So, my question is. If I don't show pain well, how can I get across to a doctor who doesn't know me that I am, indeed, in a great deal of pain? This is not the first time I've run across this problem. I've tried "showing" my pain, but was accused outright of "seeking attention" by a doctor, or like this doctor, they think I'm after drugs. I'm truly at a loss here. Honestly, it's experiences like these that make me want to give up on going to the doctor altogether.
You might consider seeing a rheumatologist to evaluate your chronic pain conditions. Fibromyalgia and arthritis (from your past history list) are both conditions they would treat. In addition, they are used to seeing patients who have been in chronic pain for long periods of time and, most importantly, looking for clues to a diagnosis in cases that isn't clearcut. Good luck! I hope you find help for your pain.
posted by SweetTeaAndABiscuit at 5:46 PM on July 14, 2012 [2 favorites]
posted by SweetTeaAndABiscuit at 5:46 PM on July 14, 2012 [2 favorites]
I honestly think you saw a bad doctor and your perceived inability to "show pain" is a red herring. Asking patients to rate their pain on a scale of 1 to 10 is a clinical standard because trying to tell how much pain someone is in based at looking at their face is unreliable at best. If you keep turning this into your problem in your mind, you're going to have even more trouble genuinely communicating your symptoms to your doctor (it's like trying not to think about a pink elephant).
posted by telegraph at 5:54 PM on July 14, 2012 [10 favorites]
posted by telegraph at 5:54 PM on July 14, 2012 [10 favorites]
Yeah, see another doctor. Commit yourself to trying at least a couple more before giving up. I know it is not fun. But doctors really vary in their ability to connect with what patients are saying. You shouldn't resign yourself to not being treated just because you didn't click with this one -- keep trying -- you are worth it.
posted by selfmedicating at 5:57 PM on July 14, 2012
posted by selfmedicating at 5:57 PM on July 14, 2012
I have an extremely high pain tolerance and have only ever encountered doctors that were eager to prescribe analgesics etc. I second the above suggestions to see a different doctor.
That said, I have had to be an advocate for myself in those real outlier cases where pain has been a real bother to me. Instead of seeking to show my pain, I've said things like "I would rank this a 7 out of 10, but it's been going on so long I'm too worn out to make a big deal out of it. Anything you suggest to get it down to a manageable level would be good by me." That has usually worked.
posted by Inspector.Gadget at 6:07 PM on July 14, 2012 [3 favorites]
That said, I have had to be an advocate for myself in those real outlier cases where pain has been a real bother to me. Instead of seeking to show my pain, I've said things like "I would rank this a 7 out of 10, but it's been going on so long I'm too worn out to make a big deal out of it. Anything you suggest to get it down to a manageable level would be good by me." That has usually worked.
posted by Inspector.Gadget at 6:07 PM on July 14, 2012 [3 favorites]
Best answer: I also would try another doctor, this one sounds ... well, rushed at best.
It's also helpful to explain in what ways your pain/problems are limited your everyday functioning. I go with my husband to the doctor because after he broke his shoulder and was having some bad back pain from the same accident, the doctor's like, "How would you rate your pain?" and he's all, "oh, a two," and I'm like, "He could not get off the couch without help and he had to sleep downstairs because he could not climb the stairs, it is clearly a seven."
Since pain is so subjective, and when you are in frequent or constant pain you tend to learn to cope with it which may perversely make it more difficult to express it properly, it can be very helpful to explain to a doctor in what ways your pain is inhibiting your daily functioning. ("Headaches so bad I can't read for more than twenty minutes at a time." "Knees hurt after one flight of stairs, I have to take elevators if it's more than one flight, so I don't go visit my sister because she's in a fourth-floor walk-up.")
You might also say (or write in a letter, if that's easier), "Look, I've been shunted from one doctor to the next with highly fragmented medical care for several years now. You can tell that by the laundry list of diagnoses I got with basically no treatment follow-up. My mental health is stable and my psychiatrists wanted me to get with a primary care doctor and try to sort out the physical symptoms. I do not KNOW what's affecting me, and I realize it may be psychosomatic, but I know that I'm in pain that affects my everyday functioning, and I would like help diagnosing and treating this pain. I want you to have the list of past diagnoses so you know what's gone before, but I'd really like it if you could start from a blank slate and try to help me get a handle on this."
If you can, I would also get recommendations from local friends, or referrals from your mental health people. And when you call for the appointment, speak to the nurse and ask if you can have a longer appointment. Say that your mental health carers want you to find a primary care physician now that your mental health is stable and that your health history is a little complex so you want to make sure the doctor has enough time to discuss it with you. (I've even just said, "I'm really freaking out and I have a lot of questions, can you schedule me for a longer appointment?" and it's been fine.) Doctors really appreciate when you schedule a longer appointment in advance if you know it'll take a while, so they don't end up behind schedule. I also try to take one of the first appointments of the day so they're not already behind and rushed.
posted by Eyebrows McGee at 6:16 PM on July 14, 2012 [10 favorites]
It's also helpful to explain in what ways your pain/problems are limited your everyday functioning. I go with my husband to the doctor because after he broke his shoulder and was having some bad back pain from the same accident, the doctor's like, "How would you rate your pain?" and he's all, "oh, a two," and I'm like, "He could not get off the couch without help and he had to sleep downstairs because he could not climb the stairs, it is clearly a seven."
Since pain is so subjective, and when you are in frequent or constant pain you tend to learn to cope with it which may perversely make it more difficult to express it properly, it can be very helpful to explain to a doctor in what ways your pain is inhibiting your daily functioning. ("Headaches so bad I can't read for more than twenty minutes at a time." "Knees hurt after one flight of stairs, I have to take elevators if it's more than one flight, so I don't go visit my sister because she's in a fourth-floor walk-up.")
You might also say (or write in a letter, if that's easier), "Look, I've been shunted from one doctor to the next with highly fragmented medical care for several years now. You can tell that by the laundry list of diagnoses I got with basically no treatment follow-up. My mental health is stable and my psychiatrists wanted me to get with a primary care doctor and try to sort out the physical symptoms. I do not KNOW what's affecting me, and I realize it may be psychosomatic, but I know that I'm in pain that affects my everyday functioning, and I would like help diagnosing and treating this pain. I want you to have the list of past diagnoses so you know what's gone before, but I'd really like it if you could start from a blank slate and try to help me get a handle on this."
If you can, I would also get recommendations from local friends, or referrals from your mental health people. And when you call for the appointment, speak to the nurse and ask if you can have a longer appointment. Say that your mental health carers want you to find a primary care physician now that your mental health is stable and that your health history is a little complex so you want to make sure the doctor has enough time to discuss it with you. (I've even just said, "I'm really freaking out and I have a lot of questions, can you schedule me for a longer appointment?" and it's been fine.) Doctors really appreciate when you schedule a longer appointment in advance if you know it'll take a while, so they don't end up behind schedule. I also try to take one of the first appointments of the day so they're not already behind and rushed.
posted by Eyebrows McGee at 6:16 PM on July 14, 2012 [10 favorites]
Find another doctor and take someone to advocate for you.
As Eyebrows McGee said, be very specific about how the pain is affecting your sleep, work, leasure, etc.
Explain that you'd prefer NOT to have narcotics, but that you want to have relief from the pain.
posted by Ruthless Bunny at 6:24 PM on July 14, 2012
As Eyebrows McGee said, be very specific about how the pain is affecting your sleep, work, leasure, etc.
Explain that you'd prefer NOT to have narcotics, but that you want to have relief from the pain.
posted by Ruthless Bunny at 6:24 PM on July 14, 2012
Best answer: I agree with everything Eyebrows McGee said, except for acknowledging that it may be "psychosomatic." That's doctor speak for "undiagnosable or untreatable" -- no reason to hand it to them.
I am currently dealing with a medical condition that just a few years ago would've been put down as stress-related. Except in the past few years, some specialists have noticed that it appears to be immune system-related and there are a few drugs that can provide relief. I work for four primary care physicians who are extremely current (some of them hold nat'l positions in their professional organizations -- and they're earnest, caring docs, to boot) in their fields (2 pediatricians, a family med, and an internist) -- none of them has heard of the variation of the condition I'm dealing with, and none of them has heard that it could be treated with the med I'm on, or the next two med options if this one doesn't work.
When you call a doctor's office, be as specific as possible about what you need: "do you have anyone who specializes in chronic pain? I'm not looking for narcotics, and have never taken them, I just need someone who can take it on with interest."
Sometimes you get a sympathetic scheduler, but I wouldn't be above saying something like "someone told me that you're a good practice to come to for this-- but I can't remember the name of the doc I was supposed to ask for. Do you know who it might've been -- I need someone who is especially good with real puzzles. I'm in chronic pain..."
If the scheduler says "oh! It's probably so and so!" You're golden. If they have no idea, move on.
posted by vitabellosi at 6:34 PM on July 14, 2012 [2 favorites]
I am currently dealing with a medical condition that just a few years ago would've been put down as stress-related. Except in the past few years, some specialists have noticed that it appears to be immune system-related and there are a few drugs that can provide relief. I work for four primary care physicians who are extremely current (some of them hold nat'l positions in their professional organizations -- and they're earnest, caring docs, to boot) in their fields (2 pediatricians, a family med, and an internist) -- none of them has heard of the variation of the condition I'm dealing with, and none of them has heard that it could be treated with the med I'm on, or the next two med options if this one doesn't work.
When you call a doctor's office, be as specific as possible about what you need: "do you have anyone who specializes in chronic pain? I'm not looking for narcotics, and have never taken them, I just need someone who can take it on with interest."
Sometimes you get a sympathetic scheduler, but I wouldn't be above saying something like "someone told me that you're a good practice to come to for this-- but I can't remember the name of the doc I was supposed to ask for. Do you know who it might've been -- I need someone who is especially good with real puzzles. I'm in chronic pain..."
If the scheduler says "oh! It's probably so and so!" You're golden. If they have no idea, move on.
posted by vitabellosi at 6:34 PM on July 14, 2012 [2 favorites]
See a different doctor. Yes, it is possible that this doctor has written you off as a "drug-seeking" patient---in the US, at least, doctors are being leaned on hard to write fewer prescriptions for narcotics.
See a rheumatologist. Joint pain is one of the things they do.
Keep a pain log. Document when and how the pain affects your activities of daily living (sleep, work, cooking, self-care like showering or dressing, etc.) Compare the pain you experience to other pain you have experienced (I described a bout of endometritis as "as painful as the time I broke my collarbone, only in my lower abdomen and going on for a week," for instance).
posted by Sidhedevil at 6:38 PM on July 14, 2012
See a rheumatologist. Joint pain is one of the things they do.
Keep a pain log. Document when and how the pain affects your activities of daily living (sleep, work, cooking, self-care like showering or dressing, etc.) Compare the pain you experience to other pain you have experienced (I described a bout of endometritis as "as painful as the time I broke my collarbone, only in my lower abdomen and going on for a week," for instance).
posted by Sidhedevil at 6:38 PM on July 14, 2012
Your doctor already suspects you of drug seeking behavior. She is a poor doctor. You don't deserve to be made to feel guilty when you seek help for medical problems. Ditch her as soon as possible, before she jots you down as a drug seeker in your medical records.
And I'm sorry, any doctor who flat out does not prescribe narcotics in any situation is more concerned about the DEA than helping their patients. In an ideal world there would be good alternatives for narcotics, but medical science has not yet advanced that far. I understand you don't take narcotics anyway, but it's a red flag.
posted by WhitenoisE at 7:04 PM on July 14, 2012
And I'm sorry, any doctor who flat out does not prescribe narcotics in any situation is more concerned about the DEA than helping their patients. In an ideal world there would be good alternatives for narcotics, but medical science has not yet advanced that far. I understand you don't take narcotics anyway, but it's a red flag.
posted by WhitenoisE at 7:04 PM on July 14, 2012
Response by poster: Darn, it took me months to find a doctor in this network that was accepting new patients. I suppose I can do some research and see if there's anyone outside of this network who is taking patients on a sliding scale... I'm still, for all intents and purposes, uninsured, and I'm not marrying my honey for another tenish months, so we can't add me to his insurance. The network I'm on right now is similar to public assistance, but a bit different. It's kind of hard to explain. I'm working hard at finding full time work, but chronic pain and fatigue make *that* difficult as well.
Thanks for the answers, everyone.
posted by patheral at 7:29 PM on July 14, 2012
Thanks for the answers, everyone.
posted by patheral at 7:29 PM on July 14, 2012
Here is a strategy that worked for me, when I had a communication problem with my doctor. I had insurance, but a hard time working up the energy to go back in. I wrote him a letter, stating what the problem was, and asking for a specific solution.
I know you are in a different situation, but it helped to write the letter, for two reasons. One, it made my wishes clear, and two, i didn't run into the problem of forgetting or getting flustered. I had help editing, which was really good, too.
I suggest this, because you said it was hard finding a doctor in the first place, so persisting with this one and approaching the problem slightly differently might help. You wrote your question articulately, so a letter would be a fairly fast step, and possibly less difficult than finding another doctor.
posted by annsunny at 7:52 PM on July 14, 2012
I know you are in a different situation, but it helped to write the letter, for two reasons. One, it made my wishes clear, and two, i didn't run into the problem of forgetting or getting flustered. I had help editing, which was really good, too.
I suggest this, because you said it was hard finding a doctor in the first place, so persisting with this one and approaching the problem slightly differently might help. You wrote your question articulately, so a letter would be a fairly fast step, and possibly less difficult than finding another doctor.
posted by annsunny at 7:52 PM on July 14, 2012
on a 1 - 10 scale, I put it at around a 7, which is par for the course
A seven basically means you're in so much pain you're grimacing and near-tears. Soreness, being achey, and moving slow is NOT a "seven" - especially if, as you say, you're not on ANY pain meds. If your "knees", "back", and "head" all hurt on a seven, it's no longer a question of "showing" pain, it's a question of physically being unable to move.
I know most people here are saying, "oh, your doctor's awful!" but if you said the pain in your knees was around a seven and you were still standing? I would question you, too. It's not even how you "appear", it's a matter of if you're in THAT much pain, you would have difficulty even standing. Like, real difficulty not, "well, I was moving kinda slow"
I get what it's like to be in pain all the time - I had untreated cluster headaches for a number of months, which sucked, because it was level 7 or 8 pain, but only for a minute or so.... but also several times a day. I know it's very difficult to convey to a doctor exactly how much pain you are in, because it's a very difficult thing to express. Furthermore the need to express the psychological pain we're experiencing, from being in chronic pain, may get added to the "this is my pain number!" output, which will prevent the doctor from doing their job correctly. Even a number 4 pain can become unbearable if it's occurring all the time - but the doctor needs to know this: is it a number 7, or a persistent number 4?
Which is why I think you need to reevaluate how much and what kind of pain you are in. As I said before, if you're up and standing, your knees are NOT at a 7. If you're walking with your eyes open and not clutching at something, your head's not at a 7.
Now (because I know people are going to jump all over me) I am NOT saying you are NOT in pain. What I am saying is that if you want a doctor to help you, you have to very closely examine:
1) What is the TRUE level of pain you have - do not exaggerate based on persistence
I am absolutely not being glib, but I've found this pain scale description to be better at understanding how to convey my feelings to the doctors than the ones they have in their offices.
2) How much does it persist
3) When does it begin/are their triggers
Keep a pain diary and note these things. "Woke up. Knee joints were already at a three. Got dressed, went downstairs, and made breakfast - knee joints up to a 5, had to rest and ice them. Headache began at noon, began at about a 7. Noticed it was gone at 1. Another headache at 6:00, began at about an 8, gone by 6:15."
This way your doctor will see the severity and persistence of your pain.
Then you need to ask yourself:
What do you want the doctor to do about it? When you told your doctor you were in pain, what did you want from her? In your previous post you didn't mention needing to see a doctor for pain (you gave a list of diagnoses that sounded painful, but didn't mention pain in the original Ask) so what made you bring up pain at this visit? Was there something especially painful troubling you? Bring it up as specifically as you can and actually discuss what you want. When I went to my doctor for back pain, I didn't say, "oh man, it hurts! .... " I said, "my back hurts - what's causing it and should I rest it or exercise it?"
Then I would think about what you want to get taken care of first. For example, you say your head hurts really badly? And you get migraines? If you know you have migraines, are you on medication for them? If you are and they aren't working, talk to the doctor about switching meds. If you're not on them, see about what you could start trying.
Considering you say this is not the first time you've had this problem with a doctor, I really think it might do to reevaluate the approach.
And - SOLELY based on what you've written here - I would not switch doctors. Doctors getting slammed for "over-prescribing" painkillers is a real thing, and doctors need to protect themselves from simple drug-seekers. And again, solely based on what you've written here, I would have said/appeared to the think the EXACT same thing as the doctor. So I would recommend you not holding this against her.
Because the big problem is that you're a new patient - and a doctor's probably more likely to get accused of "over-prescription" for giving painkillers to patient on their very first visit as opposed to their tenth, or something. So if you leave this doctor, you will probably encounter the exact same problem with the next doctor.
All that said, I really hope you're able to work with your doctor and get this sorted out soon! It's terrible to be in pain all the time!
posted by Lt. Bunny Wigglesworth at 10:16 PM on July 14, 2012 [6 favorites]
A seven basically means you're in so much pain you're grimacing and near-tears. Soreness, being achey, and moving slow is NOT a "seven" - especially if, as you say, you're not on ANY pain meds. If your "knees", "back", and "head" all hurt on a seven, it's no longer a question of "showing" pain, it's a question of physically being unable to move.
I know most people here are saying, "oh, your doctor's awful!" but if you said the pain in your knees was around a seven and you were still standing? I would question you, too. It's not even how you "appear", it's a matter of if you're in THAT much pain, you would have difficulty even standing. Like, real difficulty not, "well, I was moving kinda slow"
I get what it's like to be in pain all the time - I had untreated cluster headaches for a number of months, which sucked, because it was level 7 or 8 pain, but only for a minute or so.... but also several times a day. I know it's very difficult to convey to a doctor exactly how much pain you are in, because it's a very difficult thing to express. Furthermore the need to express the psychological pain we're experiencing, from being in chronic pain, may get added to the "this is my pain number!" output, which will prevent the doctor from doing their job correctly. Even a number 4 pain can become unbearable if it's occurring all the time - but the doctor needs to know this: is it a number 7, or a persistent number 4?
Which is why I think you need to reevaluate how much and what kind of pain you are in. As I said before, if you're up and standing, your knees are NOT at a 7. If you're walking with your eyes open and not clutching at something, your head's not at a 7.
Now (because I know people are going to jump all over me) I am NOT saying you are NOT in pain. What I am saying is that if you want a doctor to help you, you have to very closely examine:
1) What is the TRUE level of pain you have - do not exaggerate based on persistence
I am absolutely not being glib, but I've found this pain scale description to be better at understanding how to convey my feelings to the doctors than the ones they have in their offices.
2) How much does it persist
3) When does it begin/are their triggers
Keep a pain diary and note these things. "Woke up. Knee joints were already at a three. Got dressed, went downstairs, and made breakfast - knee joints up to a 5, had to rest and ice them. Headache began at noon, began at about a 7. Noticed it was gone at 1. Another headache at 6:00, began at about an 8, gone by 6:15."
This way your doctor will see the severity and persistence of your pain.
Then you need to ask yourself:
What do you want the doctor to do about it? When you told your doctor you were in pain, what did you want from her? In your previous post you didn't mention needing to see a doctor for pain (you gave a list of diagnoses that sounded painful, but didn't mention pain in the original Ask) so what made you bring up pain at this visit? Was there something especially painful troubling you? Bring it up as specifically as you can and actually discuss what you want. When I went to my doctor for back pain, I didn't say, "oh man, it hurts! .... " I said, "my back hurts - what's causing it and should I rest it or exercise it?"
Then I would think about what you want to get taken care of first. For example, you say your head hurts really badly? And you get migraines? If you know you have migraines, are you on medication for them? If you are and they aren't working, talk to the doctor about switching meds. If you're not on them, see about what you could start trying.
Considering you say this is not the first time you've had this problem with a doctor, I really think it might do to reevaluate the approach.
And - SOLELY based on what you've written here - I would not switch doctors. Doctors getting slammed for "over-prescribing" painkillers is a real thing, and doctors need to protect themselves from simple drug-seekers. And again, solely based on what you've written here, I would have said/appeared to the think the EXACT same thing as the doctor. So I would recommend you not holding this against her.
Because the big problem is that you're a new patient - and a doctor's probably more likely to get accused of "over-prescription" for giving painkillers to patient on their very first visit as opposed to their tenth, or something. So if you leave this doctor, you will probably encounter the exact same problem with the next doctor.
All that said, I really hope you're able to work with your doctor and get this sorted out soon! It's terrible to be in pain all the time!
posted by Lt. Bunny Wigglesworth at 10:16 PM on July 14, 2012 [6 favorites]
This is a major problem in pain research.
There is no reliable way to transmit exactly what level of pain one is feeling to another. Everyone (different groups of people) feel pain differently.
To generalize the problem; people who are seriously depressed but manage to hold a job can't be diagnosed as depressed because they aren't functionally inpeded. Functional depressive.
Similarly with pain, some people can put up with immense amounts of it and are still "functional" whereas someone else with a much much lesser, for what that term is worth when talking about pain, is unable to perform even every-day activities.
I'd suggest testing for morphine response (if you've been given it and didn't get any pain relief) because a future non-adverse response by you in a potential future may prompt a higher morphine dose, which could negatively impact your being alive.
--
But for actually answering your question, try to enumerate to your potentially-prescribing physician how the pain affects you and what normal activities it keeps you from doing. Like sleeping, or walking up a couple of flights of stairs, or carrying groceries for more than a couple of blocks,...
posted by porpoise at 10:35 PM on July 14, 2012 [1 favorite]
There is no reliable way to transmit exactly what level of pain one is feeling to another. Everyone (different groups of people) feel pain differently.
To generalize the problem; people who are seriously depressed but manage to hold a job can't be diagnosed as depressed because they aren't functionally inpeded. Functional depressive.
Similarly with pain, some people can put up with immense amounts of it and are still "functional" whereas someone else with a much much lesser, for what that term is worth when talking about pain, is unable to perform even every-day activities.
I'd suggest testing for morphine response (if you've been given it and didn't get any pain relief) because a future non-adverse response by you in a potential future may prompt a higher morphine dose, which could negatively impact your being alive.
--
But for actually answering your question, try to enumerate to your potentially-prescribing physician how the pain affects you and what normal activities it keeps you from doing. Like sleeping, or walking up a couple of flights of stairs, or carrying groceries for more than a couple of blocks,...
posted by porpoise at 10:35 PM on July 14, 2012 [1 favorite]
On reading this thread I would strongly recommend you use this brilliant medical pain scale, which has helped me understand chronic and severe pain when I haven't experienced pain anywhere beyond 'moderate 5' and that only twice - which is a position many people, including medical professionals, may well also be in.
http://lane.stanford.edu/portals/cvicu/HCP_Neuro_Tab_4/0-10_Pain_Scale.pdf
(NB that 'moderate 3' in the pdf is actually '5', proofing mistake)
A doctor who is at least interested in pain issues, if they're not already very familiar with comparative pain descriptors like these, will latch onto a scale like this straight away if you introduce it. I'd try taking a printout and working with reference to it - lots of great suggestions above too.
Good luck, I'm rooting for you.
posted by lokta at 3:58 AM on July 15, 2012 [3 favorites]
http://lane.stanford.edu/portals/cvicu/HCP_Neuro_Tab_4/0-10_Pain_Scale.pdf
(NB that 'moderate 3' in the pdf is actually '5', proofing mistake)
A doctor who is at least interested in pain issues, if they're not already very familiar with comparative pain descriptors like these, will latch onto a scale like this straight away if you introduce it. I'd try taking a printout and working with reference to it - lots of great suggestions above too.
Good luck, I'm rooting for you.
posted by lokta at 3:58 AM on July 15, 2012 [3 favorites]
This stuff is truly a pain in the ass.
I was recently diagnosed w/ MS, after years and years of going to doctors. I, too, do not express my pain or any other of the "invisible" symptoms very well.
Fortunately, my health insurance allows me to choose to see a neurologist without a referral, and after talking to a cousin and an uncle who had MS, this is what I did. 10 months later, I have a diagnosis .. which is to say, I've got somewhere to start when looking for relief & answers.
Internists are also an option.
posted by dwbrant at 8:52 AM on July 15, 2012
I was recently diagnosed w/ MS, after years and years of going to doctors. I, too, do not express my pain or any other of the "invisible" symptoms very well.
Fortunately, my health insurance allows me to choose to see a neurologist without a referral, and after talking to a cousin and an uncle who had MS, this is what I did. 10 months later, I have a diagnosis .. which is to say, I've got somewhere to start when looking for relief & answers.
Internists are also an option.
posted by dwbrant at 8:52 AM on July 15, 2012
Response by poster: I'd really like to address the pain scale thing. The problem is, I was grimacing and near tears -- on the inside. After this whole debacle I drove home and curled up on my bed for the rest of the day because it hurt so bad. If it hadn't taken me months to get that appointment, I would had rescheduled. Here's the thing, being the single mother of kids way back when, I couldn't go around crying every day and sitting in bed because my body hurt. I had kids to take care of, and no one was going to do it for me. Not to mention that where I grew up, they preyed on the weak... so I learned at an early age not to show pain. Of course I was moving around and functional even while near tears. If I stopped moving because it hurt, I'd never move again. No, my head was not at a seven that day, but my back was, and my knees were near a six, like little knives stabbing at me whenever I walked. But no one is going to walk for me, so I have to walk, even if it's slowly. I can't be non-functional because there's no one to function for me.
Look, I've been in pain a long time. I know what my pain levels are. What did I want her to do? I wanted her to tell me what plans we were going to make to get this pain under control. I mentioned all of these painful things *before* telling her I was in pain that day. I even told her I was in something of a pain fog that day while we were talking because I had difficulty remembering words. We talked for several minutes about the daily pain I'm in. But for some reason, she focused on my asthma, gave me a breathing treatment though I was breathing fine, and told me she wanted me to see a pulmonologist. She was walking out of the door and asking, "did you have any other concerns?" when I said. "Um, what about the fibromyalgia, arthritis, and other things on my list? Are we going to address those? I'd really like to not be in pain all of the time." To which she replied, "Oh are you in pain right now?" etc...
I want my pain to go away. I know she can't wave a magic wand and make it disappear. And I told her this when she said she didn't prescribe narcotics. I'm just tired of being treated like I'm seeking attention or drug seeking. I'm tired of having my pain dismissed because doctors can't see that I'm in pain. It's happened over and over again. I'm really just tired of it.
posted by patheral at 10:11 AM on July 15, 2012 [1 favorite]
Look, I've been in pain a long time. I know what my pain levels are. What did I want her to do? I wanted her to tell me what plans we were going to make to get this pain under control. I mentioned all of these painful things *before* telling her I was in pain that day. I even told her I was in something of a pain fog that day while we were talking because I had difficulty remembering words. We talked for several minutes about the daily pain I'm in. But for some reason, she focused on my asthma, gave me a breathing treatment though I was breathing fine, and told me she wanted me to see a pulmonologist. She was walking out of the door and asking, "did you have any other concerns?" when I said. "Um, what about the fibromyalgia, arthritis, and other things on my list? Are we going to address those? I'd really like to not be in pain all of the time." To which she replied, "Oh are you in pain right now?" etc...
I want my pain to go away. I know she can't wave a magic wand and make it disappear. And I told her this when she said she didn't prescribe narcotics. I'm just tired of being treated like I'm seeking attention or drug seeking. I'm tired of having my pain dismissed because doctors can't see that I'm in pain. It's happened over and over again. I'm really just tired of it.
posted by patheral at 10:11 AM on July 15, 2012 [1 favorite]
See a rheumatologist. The rheumatologist may refer you to a pain doc. A GP can't really diagnose arthritis.
Keep the pain log. The pain log can make a huge difference.
I am sorry you are having so much trouble getting medical care that is responsive to your needs. There are a lot of people on support forums for people with arthritis sharing strategies for communicating effectively about pain. Perhaps that can be a resource for you.
I have been living with chronic, life-limiting illness for more than ten years. It is frustrating when doctors don't understand, I hear you. I have found that rheumatologists are very responsive to discussing pain in detail with patients, because pain is a key element in diagnosis for many of the issues they treat.
Start keeping the pain log, get an appointment with a rheumatologist, and bring your pain log to that appointment.
posted by Sidhedevil at 10:58 AM on July 15, 2012
Keep the pain log. The pain log can make a huge difference.
I am sorry you are having so much trouble getting medical care that is responsive to your needs. There are a lot of people on support forums for people with arthritis sharing strategies for communicating effectively about pain. Perhaps that can be a resource for you.
I have been living with chronic, life-limiting illness for more than ten years. It is frustrating when doctors don't understand, I hear you. I have found that rheumatologists are very responsive to discussing pain in detail with patients, because pain is a key element in diagnosis for many of the issues they treat.
Start keeping the pain log, get an appointment with a rheumatologist, and bring your pain log to that appointment.
posted by Sidhedevil at 10:58 AM on July 15, 2012
Response by poster: Can I make an appointment with a rheumatologist without a referral from a GP? I've downloaded a pain log app to my phone, so that should be helpful.
posted by patheral at 10:25 PM on July 15, 2012
posted by patheral at 10:25 PM on July 15, 2012
"Can I make an appointment with a rheumatologist without a referral from a GP? "
Call the 1-800 number on the back of your insurance card and ask. Then ask, "Can you give the names of a few rheumatologists in my area who are in your network?" Might as well have them do it since you have them on the phone anyway.
(My insurance recently became an HMO after spending most of my life on various types of PPOs, and I was surprised that I can "self-refer" to basically any specialist I want, as long as they're in-network. But it's a 2-minute phone call to verify that and be sure.)
posted by Eyebrows McGee at 5:58 AM on July 16, 2012
Call the 1-800 number on the back of your insurance card and ask. Then ask, "Can you give the names of a few rheumatologists in my area who are in your network?" Might as well have them do it since you have them on the phone anyway.
(My insurance recently became an HMO after spending most of my life on various types of PPOs, and I was surprised that I can "self-refer" to basically any specialist I want, as long as they're in-network. But it's a 2-minute phone call to verify that and be sure.)
posted by Eyebrows McGee at 5:58 AM on July 16, 2012
Response by poster: My "insurance" card consists of a blank, plastic card with my identification number pasted on to it typed neatly on a white piece of paper. ^_^ I just wondered if a rheumy would take a patient coming in out of the blue.
posted by patheral at 11:24 AM on July 16, 2012
posted by patheral at 11:24 AM on July 16, 2012
I was grimacing and near tears -- on the inside
As I said, a pain level of seven is IMPOSSIBLE to keep on the inside. If your knees are at 7, you cannot stand on them. If your head is at seven you cannot walk with it. If you are not displaying the pain it is NOT a 7. As you can see (from the better pain scale lokta linked to) 7 is close to passing out.
But no one is going to walk for me, so I have to walk, even if it's slowly. I can't be non-functional because there's no one to function for me.
I think you are getting confused about what it means to be functional. You are either functional or you are not. If you are able to walk, you are able to walk. If you are able to walk albeit slowly, you are still able to walk. If you are unable to walk, you require a wheelchair/crutches/whatever. I know where you're coming from - I don't have anyone to help me do anything, either. When my foot was unusable (pain level 7 if anything touched it) I had to hop around on the other foot, wincing as even jostling the foot was painful (though not a 7). If you'd asked me to put full weight on that foot I could not have, probably not without passing out. I was not able to suddenly walk on it, not even slowly, because if I didn't no one else would. If it had been my right foot I would have not been able to drive my car to work. I don't even have anyone to give me a ride, but that would not have suddenly made me able to use my pain 7 foot, even gently, to drive.
I'm not saying you don't know your own pain - as I said multiple times you know how much pain you are in - however I am saying that, based on what you've described, you do NOT know the pain scale that you are trying to use with your doctor and by your own admission this has caused problems.
my head was not at a seven that day, but my back was, and my knees were near a six
Okay, originally you said you "put it around a 7" and did not differentiate between any of them. Did you do so for your doctor? Did she know it was your back that was primarily hurting you? Because I did not get that from your post at all - to me it read that your knees back, and head hurt, all at around a 7.
for some reason, she focused on my asthma, gave me a breathing treatment though I was breathing fine, and told me she wanted me to see a pulmonologist.
Describe "breathing fine" - do you simply mean no wheezing? Sometimes improper lung function can present as .... back pain. Are you going to see a pulmonologist as recommended?
I want my pain to go away. I'm just tired of being treated like I'm seeking attention or drug seeking. I'm tired of having my pain dismissed because doctors can't see that I'm in pain. It's happened over and over again.
Again, I get it. But going back to your original post you've never really had a steady doctor, so where did all these diagnoses come from in the first place? Urgent Care/ER/clinic doctors? You need to find a PCP and work WITH them - it's seems like you've done a lot of bouncing between doctors (which may be due to circumstances beyond your control) which can make it VERY hard to properly diagnose something. Sometimes some diseases can appear similar to other diseases, but it's very difficult for a doctor to rule that out if BOOM you're never seen again, or off to the next doctor. For example you mention having Fibromyalgia, arthritis, IBS, and migraines. Were these diagnoses from the same doctor? When you received the initial diagnosis for fibromyalgia, did you and the diagnosing doctor come up with a treatment plan? Because IBS and migraines seem to go with fibromyalgia, you may only really have two things to worry about treating, not four.
I'm really just tired of it.
I'm worried this is what part of the problem is - psychological. You can't show pain at the doctor's office, but at home it's so painful you curl into a ball? Which is it? You seem to be so tired of the pain that you want to figure out what number they will take seriously. But it's having the opposite effect and making you seem like an attention seeker.
By not recognizing your actual pain (as described) is not in line with the currently used pain scale, you will continue to receive this treatment from doctors.
posted by Lt. Bunny Wigglesworth at 2:55 PM on July 16, 2012 [1 favorite]
As I said, a pain level of seven is IMPOSSIBLE to keep on the inside. If your knees are at 7, you cannot stand on them. If your head is at seven you cannot walk with it. If you are not displaying the pain it is NOT a 7. As you can see (from the better pain scale lokta linked to) 7 is close to passing out.
But no one is going to walk for me, so I have to walk, even if it's slowly. I can't be non-functional because there's no one to function for me.
I think you are getting confused about what it means to be functional. You are either functional or you are not. If you are able to walk, you are able to walk. If you are able to walk albeit slowly, you are still able to walk. If you are unable to walk, you require a wheelchair/crutches/whatever. I know where you're coming from - I don't have anyone to help me do anything, either. When my foot was unusable (pain level 7 if anything touched it) I had to hop around on the other foot, wincing as even jostling the foot was painful (though not a 7). If you'd asked me to put full weight on that foot I could not have, probably not without passing out. I was not able to suddenly walk on it, not even slowly, because if I didn't no one else would. If it had been my right foot I would have not been able to drive my car to work. I don't even have anyone to give me a ride, but that would not have suddenly made me able to use my pain 7 foot, even gently, to drive.
I'm not saying you don't know your own pain - as I said multiple times you know how much pain you are in - however I am saying that, based on what you've described, you do NOT know the pain scale that you are trying to use with your doctor and by your own admission this has caused problems.
my head was not at a seven that day, but my back was, and my knees were near a six
Okay, originally you said you "put it around a 7" and did not differentiate between any of them. Did you do so for your doctor? Did she know it was your back that was primarily hurting you? Because I did not get that from your post at all - to me it read that your knees back, and head hurt, all at around a 7.
for some reason, she focused on my asthma, gave me a breathing treatment though I was breathing fine, and told me she wanted me to see a pulmonologist.
Describe "breathing fine" - do you simply mean no wheezing? Sometimes improper lung function can present as .... back pain. Are you going to see a pulmonologist as recommended?
I want my pain to go away. I'm just tired of being treated like I'm seeking attention or drug seeking. I'm tired of having my pain dismissed because doctors can't see that I'm in pain. It's happened over and over again.
Again, I get it. But going back to your original post you've never really had a steady doctor, so where did all these diagnoses come from in the first place? Urgent Care/ER/clinic doctors? You need to find a PCP and work WITH them - it's seems like you've done a lot of bouncing between doctors (which may be due to circumstances beyond your control) which can make it VERY hard to properly diagnose something. Sometimes some diseases can appear similar to other diseases, but it's very difficult for a doctor to rule that out if BOOM you're never seen again, or off to the next doctor. For example you mention having Fibromyalgia, arthritis, IBS, and migraines. Were these diagnoses from the same doctor? When you received the initial diagnosis for fibromyalgia, did you and the diagnosing doctor come up with a treatment plan? Because IBS and migraines seem to go with fibromyalgia, you may only really have two things to worry about treating, not four.
I'm really just tired of it.
I'm worried this is what part of the problem is - psychological. You can't show pain at the doctor's office, but at home it's so painful you curl into a ball? Which is it? You seem to be so tired of the pain that you want to figure out what number they will take seriously. But it's having the opposite effect and making you seem like an attention seeker.
By not recognizing your actual pain (as described) is not in line with the currently used pain scale, you will continue to receive this treatment from doctors.
posted by Lt. Bunny Wigglesworth at 2:55 PM on July 16, 2012 [1 favorite]
Also, just one last thing - you can almost think of your doctor as repairing your house. If you've got a house in pretty poor condition, but have a new repairer in each week, the results are going to not only take longer, but they'll be disjointed. You can also expect a repairer to be a bit overwhelmed at a huge laundry list of repairs plunked in front of them.
If you don't stay with this doctor, then you don't stay with this doctor. But if you have chronic health problems the BEST thing you can do for yourself is find a PCP to trust - one that knows if a follow up is needed in one month, or three, or six, whatever. Furthermore you can usually find a number of specialists that operate with your insurance, but when you have a good PCP they will make referrals not just to "a" specialist, but the right on for you.
posted by Lt. Bunny Wigglesworth at 3:06 PM on July 16, 2012
If you don't stay with this doctor, then you don't stay with this doctor. But if you have chronic health problems the BEST thing you can do for yourself is find a PCP to trust - one that knows if a follow up is needed in one month, or three, or six, whatever. Furthermore you can usually find a number of specialists that operate with your insurance, but when you have a good PCP they will make referrals not just to "a" specialist, but the right on for you.
posted by Lt. Bunny Wigglesworth at 3:06 PM on July 16, 2012
Response by poster: Okay, I've had migraines so bad I want to bash my head against a brick wall to make them go away. So bad that I can barely see. So bad that all I want to do is curl up on the floor in a dark room until they go away. And if that were an option, I would do so, have done so. That would be, on the pain scales y'all gave me, about an eight if not a nine. Yet I still had to go to work, paste on a smile and function without anyone knowing I have nothing more than a headache, if that. Why? Because my jobs in the past didn't have sick days, and I had kids to feed.
I once dropped a piece of furniture on my foot and which made me go hot, then cold, get nauseous, then pass out from the pain. That would be, according to the pain charts, a ten. But a few hours later, I went to work and stood on that still throbbing and very painful foot for seven hours and no one was the wiser other than a small limp. Because, as I said, I didn't get sick days and I had kids to feed.
Please allow me the knowledge of my body. I don't show pain in front of others, especially strangers. I just can't do it. I've tried and it comes off as false. That's why I waited until I got home to curl up on my bed. It's this inability to show pain in front of others that caused me to ask the question. I'm sorry if you believe I'm not in as much pain as I say I am. I am. It's the same problem I have with doctors. I'm in incredible pain, but I don't seem to be able to relate that to others. Even online it seems. *sigh*
As for the diagnoses... It was a rheumy that diagnosed me with fibromyalgia a couple of years ago during my stint in college. The student clinic I had access to wasn't great with following up on that, and the rheumy was too far away to see regularly. The arthritis diagnosis came from a clinical doctor I was seeing semi-regularly about ten years ago, he also diagnosed the GERD and IBS. The asthma diagnosis came about when I ended up in the emergency room gasping for breath because I developed pneumonia & bronchitis one winter. The degenerative disc disease, high cholesterol, and gall bladder were diagnosed way back when I was still married to my first husband and had insurance. I've been diagnosed with bipolar since I was nineteen and by many MANY psychiatrists, so there's no doubting that particular diagnosis.
posted by patheral at 3:33 PM on July 16, 2012
I once dropped a piece of furniture on my foot and which made me go hot, then cold, get nauseous, then pass out from the pain. That would be, according to the pain charts, a ten. But a few hours later, I went to work and stood on that still throbbing and very painful foot for seven hours and no one was the wiser other than a small limp. Because, as I said, I didn't get sick days and I had kids to feed.
Please allow me the knowledge of my body. I don't show pain in front of others, especially strangers. I just can't do it. I've tried and it comes off as false. That's why I waited until I got home to curl up on my bed. It's this inability to show pain in front of others that caused me to ask the question. I'm sorry if you believe I'm not in as much pain as I say I am. I am. It's the same problem I have with doctors. I'm in incredible pain, but I don't seem to be able to relate that to others. Even online it seems. *sigh*
As for the diagnoses... It was a rheumy that diagnosed me with fibromyalgia a couple of years ago during my stint in college. The student clinic I had access to wasn't great with following up on that, and the rheumy was too far away to see regularly. The arthritis diagnosis came from a clinical doctor I was seeing semi-regularly about ten years ago, he also diagnosed the GERD and IBS. The asthma diagnosis came about when I ended up in the emergency room gasping for breath because I developed pneumonia & bronchitis one winter. The degenerative disc disease, high cholesterol, and gall bladder were diagnosed way back when I was still married to my first husband and had insurance. I've been diagnosed with bipolar since I was nineteen and by many MANY psychiatrists, so there's no doubting that particular diagnosis.
posted by patheral at 3:33 PM on July 16, 2012
Response by poster: Oh, and I've had migraines since age fourteen... well before fibro reared its ugly head.
posted by patheral at 3:52 PM on July 16, 2012
posted by patheral at 3:52 PM on July 16, 2012
This thread is closed to new comments.
There are legitimate doctors who specialize in treating pain. search for an anesthesiologist who does nerve blocks and other injections. They can figure out what tests to order to help find the actual cause of your pain. The best of these doctors will work to stop the pain, rather than mask it.
When you call to set up an appointment, lead with the information that you do not want a prescription for pain medication. Next explain that you want to find and solve the reason for your pain. Check first that your insurance carrier has a contract with (or otherwise will be on the hook to pay) the doctors you are calling, because these injections are expensive.
posted by bilabial at 5:38 PM on July 14, 2012 [1 favorite]