what others think of us on this forum...

[ctts]

I am sure many of you have seen similar discussions on the web:

http://www.healingwell.com/community/default.aspx?f=16&m=2543899

In case you haven't seen it though, it might be helpful for you to see how things look from the perspective of our patients...

I sometimes refer to some of my patients as "crazy". I dont mean it in a mean spirited way, but just a convenient label to describe patients who have pain that cannot be explained by imaging or some reasonable physiological basis. However when I use that term to describe a patient to my wife, she takes offense at that, and I have since really taken her concern to heart. I try not to call my patients crazy or think of them as such anymore. Another factor that is changing my perspective a little is that my oldest of 3 children who is 6 yrs old seems to be very sensitive and sometimes has what appears to be psychosomatic complaints. Ultimately these patients are challenging and seemingly unsatisfying for us as physicians as they often do not clearly get better. But still, I think many of them benefit from having compassionate physicians who listen to them. It never helps to try to convince them that their pain isnt real, and probably makes things worse. We dont want to reinforce negative or maladaptive behaviors, but I think they actually benefit when we validate their experience of pain. When I say validate, I might say something like, "I know that you are experiencing real pain, but your MRI and other tests are fine, so I think your spine is structurally sound.". Of course the exact nature of the discussion would depend on the patient's situation. I think malingerers are another story and do not deserve this kind of respect, but we should not confuse patients with "fibromyalgia" and psychosomatic disorders with malingerers.

Ok, sorry for my rambling...I think I'll stop here.

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[Ducttape]

oh i hear this all the time.

"you dont know what im going through"

"noone else suffers the way i do"

"i wish you could feel what i feel"

"you dont know anything about my pain, you dont have pain"


first, it is presumptious of them to assume that the doctor seeing you doesnt have chronic neck or back pain. second, it is presumptious to assume that just because someone doesnt have "their condition" that they cant treat it (otherwise there can never be a male gynecologist or a precancer oncologist).

chronic pain patients with fibro and the like will not get better because they are looking for a disease and a cure, often through pills, ofttimes narcotics. it doesnt exist, and opioids will make them worse, but there is temporary gain.

the majority of patients do not want to hear that cognitive behavioral therapy, coping skills, focus on functionality are the only things that will allow them improved quality of life. they want a pill that will melt away their troubles, "melt away my pain". so all they hear are health care professionals telling them that they cant have what they think will help them.

 

[emd123]

I never tell or imply to a patient their pain isn't real. Even if every test is negative, there's no way to really know, or prove its not real. We all know there is pain that doesn't show on an MRI or X-ray.

The disconnect comes when the treatment is recommended. For example, there's only 3 FDA approved drugs for fibromyalgia. What if there's an insistence on some other regimen some other doctor put them on or their friend on and you don't agree with it?

Then when you refuse to change or bargain your recommendation for treatment, it's assumed you don't care, that you are accusing someone of x, y, or z, you think their pain isn't real, or you have no compassion. It's not the case. We deal with highly dangerous and controlled medications and we have to be very strict. We have no choice. Those that aren't diligent can hurt people, or end up in jail, or both. We have no choice. That doesn't equal a lack of compassion. In fact, it's just the opposite. The guy who has the patient out of the office with a plastic compassionate smile in thirty seconds with whatever a patient requests is not compassionate. It's just the opposite.

There's the disconnect.

Throw on top of that the fact that we do have 15,000 people per year dying of unintentional prescription pill overdoses, and the DEA giving doctors long jail sentences almost daily for improper prescribing and you are going to have some tension between even very good doctors and good patients. It's unavoidable.

This is the world we live in.

 

[imagoodmanyea]

Sad to say, but for the majority of the patient's that I see in my state-run academic center, compassion = opioids. These are the ones usually on benzos for anxiety and are on disability. When I go and look up the history of these "compassionate doctors" that provide opioids to these patients, I sometimes find medical board sanctions for diversion and inappropriate writing of scripts.

Yes, there are patient's who have been grossly mismanaged by surgeons, other pain physicians, and PCP's. The patient's with good insight are usually grateful for the realistic expectations and treatment options that I lay out for them.

Then there are the chemical copers who think that they only way you provide compassionate care is to give them what they want (vicosomanoxanax usually). I think some of these providers who liberally write scripts do mean well, but there is an unhealthy co-dependent relationship that not beneficial for the patient in the long-run.

 

[121985]

I am a member of 'Healing Well', also a qualified veterinarian. I realised that I had joined this forum sometime ago, and I apologise for taking the liberty of posting in your forum. Maybe I can give you a view, just based on my own experiences, to help you understand why many pain patients seemingly behave as they do.

I do wish to address ctts' remark about referring to his/her patients as 'crazy'. I am quite appalled that you do this - and even if it's not mean spirited I can only hope that you don't use it to your patients faces. I have widespread CRPS, spread from an arthroscopy. I was 14 when first injured, and had close to six years being told I was crazy because of medicos who couldn't concede that they didn't have answers. I know that being unable to resolve a case - or at least bring your patient a modicum of relief - can be incredibly frustrating on both a personal and professional level, but there are a frightening number of doctors (vets too, I'm ashamed to say) who will lay the blame for this at their patient's feet. Unless any of you has suffered with severe, relentless chronic pain, you cannot imagine the impact this has on one's well being - physical as well as mental.

Ducttape - you commented about many patients not wanting CBT, etc. I know that among some of the pain patients I interact with, especially those with CRPS, there is a fear when a psychologist or counsellor is mentioned of "Oh gosh...s/he thinks I'm depressed and crazy. If I see a shrink everyone will think I'm inventing my pain." Very few doctors - be they GP's or in PM seem to take the time out to explain that depression is a common response to chronic pain. Perhaps most patients you see in your practice refuse non-pharmacological interventions, and that's sad for sure. Perhaps the most important thing I've learnt in 14 years of severe pain is that a single pain management method alone doesnt work, Fibromyalgia - having been given a fibro diagnosis independently by my pain specialist, neurologist and GP, I would tend to believe in its existence, but it's not appropriate for me to come here and argue that point with you.

As to a patient coming in insistent on treatment X, Y or Z... To my mind, if you're cutting your patients off short, you're making them feel less valued, silly even. I used to get pet owners coming in - sure they'd found the answer to Fido's problems because they'd seen it on the 'net, or Mrs J next door had mentioned it - but usually taking the time to explain why it might not be appropriate makes alI the difference. I know the odd person will create problems because you don't given them what they want - but just consider for a moment that your patients may have been in pain for months, years with not a spot of relief. If they've been told of a supposedly effective drug, it's inevitable that they're going to ask about it. Ducttape, you've said it's presumptuous for a pain patient to assume that their doctor doesn't have chronic back or neck pain; yes, it it...but even allowing for how subjective pain is, those of us with severe and disabling pain can assume we have a level of pain well beyond that of our treating doctors,

Thanks for your time ladies/gents.

 

[jonnylingo]

those of us with severe and disabling pain can assume we have a level of pain well beyond that of our treating doctors

And why do you get to assume this? No treating providers have chronic debilitating pain?

And does this make you the authority on what is best for you since no provider could possibly empathize with your pain?

I've got chronic pain, but I've got bills to pay and things to do. Don't assume you know more about pain.

 

[Ducttape]

Ducttape - you commented about many patients not wanting CBT, etc. I know that among some of the pain patients I interact with, especially those with CRPS, there is a fear when a psychologist or counsellor is mentioned of "Oh gosh...s/he thinks I'm depressed and crazy. If I see a shrink everyone will think I'm inventing my pain."

patients are told about multidisciplinary pain management by the nurse who rooms them. then the NP will see them and discuss PT and B-med.

i then, when starting a discussion on pain treatment options, i will first discuss PT to improve functionality, although it will cause temporary increased pain. then i will spend about 5-10 minutes discussing B med, the benefits thereof, the fact that it is not a social stigma, that over 50% of chronic pain patients can be diagnosed with some degree of clinical depression, and that pain psychologists are specialists in treating patients with chronic pain, and the patients are not crazy or psychotic - they have typical classic responses to a chronic pain process.

i review some of the studies - the Cochrane database is simplest, tho not a study - showing the b med is probably the best long term effective therapy, then i will tell them that everything else we do will be for temporary pain relief so that they can improve their cognitive coping skills and improve their physical functioning so as to attain as high as quality of life as can be hoped for with their chronic pain condition. there is no cure, and their pain will fluctuate through the years, but expect many years of pain. we have to learn to manage the pain to prevent it from consuming our souls, ourselves.

meds such as opioids will provide very short term pain relief, but similar to smoking cig or drinking alcohol, the long term effects are usually so toxic that there is no way i can recommend them, and they should be reserved for those conditions that are truly short term or truly palliative.

see. my 3pm eval didnt show up for the usual speil, now im going to charge you for a level 3 new patient visit....


finally, i freely admit that my pain process is not as severe as my patients - because i am working, functional, and enjoy life as much as possible, cause time waits for noone, and we cannot reasonably invent a time machine, given level of technology and the problems of quantum mechanics with regards to space-time travel. (Hawkings argues that it is impossible to go back. Others postulate that it might be possible, but would not be possible until a time machine were already invented (and one has not been, as far as i can tell).)

but for patients to make such assumptions - you know the saying about that.

 

[121985]

And why do you get to assume this? No treating providers have chronic debilitating pain?

And does this make you the authority on what is best for you since no provider could possibly empathize with your pain?

I've got chronic pain, but I've got bills to pay and things to do. Don't assume you know more about pain.

Jonny, when I said that I didn't post here in order to argue with you I meant that. I'm no troll, and I don't want to turn your forum into a war zone. But since you are asking for a reply, when I use the term 'disabling pain' I mean just that... DISABLING. Debilitating pain is one thing, and is horrendous enough. But it can be managed, can be worked around. I'm sure someone will pick holes, but when I use the term disabling, I mean totally intractable pain. I have bills to pay and things to do as well, but I suspect (and apologise profusely if you do) that you don't deal daily with pain-induced nausea, or have to pace to a near-ridiculous extent to prevent your limbs ballooning and breakthrough pain so severe at times it causes blackouts.

Deciding what is best for me...I advocate for myself, and am fortunate to have doctors who discuss my treatment with me in detail and let me express my thoughts and ideas...

I'm also happy to stand corrected, but I don't believe I said anywhere that my doctors couldn't empathise with my pain? I had neither fur nor feathers the last time I checked, but that never stopped me from empathising with my animal patients back when I was working!

Don't confuse empathy and understanding - you could be the kindest, most compassionate, empathetic, most knowledgable doctor in existence - but unless you have the experience of what it's like to live, day in, day out with pain that is relentless and all-consuming, you can only try to guess at what your patient is experiencing. Does that make more sense? Perhaps it appears as though I'm having a go but I can assure you I'm not.

Ducttape, thank you for your response.

 

[emd123]

I am a member of 'Healing Well', also a qualified veterinarian. I realised that I had joined this forum sometime ago, and I apologise for taking the liberty of posting in your forum. Maybe I can give you a view, just based on my own experiences, to help you understand why many pain patients seemingly behave as they do...As to a patient coming in insistent on treatment X, Y or Z.....

Thanks for your time ladies/gents.

Thank you for posting. I don't doubt for a second you are in terrible pain. I agree, that there are doctors who are not understanding, not compassionate and overly cynical. It shouldn't be that way. However, moving beyond that, please help us find a solution to some very big problems:

1- We have 15,000+ patients dying every year from accidental prescription drug overdoses (NOT including street drugs).

2- If you read this forum, sermo or other similar internet sites you'll see news reports almost daily of doctors being arrested, losing their licenses (loss of entire life's work and career) and in some cases being charged with manslaughter or even murder for over prescribing (poster 101N post links to these news stories frequently).

Aren't these two incredibly serious problems that we have to be aware of with every prescription we write?

How do we predict which patient will have an accidental overdose beforehand, when not one of them thinks beforehand it will ever happen to them, so as to abide by the first and most important part of our oath, to "first do no harm"?

How do we be sure that a persons "accident," a person we trusted enough to prescribe to, will not have an "accident" that could result in us being blamed, losing our license, losing our job, career or result in felony manslaughter or even murder charges since we see this happening almost every day?

How do we reconcile the fact that some of the leaders of our specialty, some of the greatest advocates of freely treating patients with opiates aggressively, have had their practices shut down or are being investigated by Congress and/or the DEA?

http://www.minnpost.com/second-opin...use-opioid-painkillers-having-second-thoughts


Others pain experts, who were instrumental in promoting the wider use of prescription pain medicines, have recently admitted the entire reasoning behind the change in thinking (that opiates have "less than 1% risk of addiction") was, well....made up!

http://www.medpagetoday.com/Neurology/PainManagement/37441


As an articulate chronic pain patient who is also a doctor of veterinary medicine, I am asking you to do two things:

1- Tell us how we deal with these issues yet still effectively treat patients pain.

2- Extend to us the same empathy and understanding that you ask of us, by seeing the tremendous obstacles we face in trying to treat patients' pain properly.

Again, thanks for your insight.

 

[lobelsteve]

Meh. Id rather be more of a jerk on the internet. In conversation with 2 of the Budapest criteria authors: neither ever saw more than a handful of migrating crps and neither ever saw widespread crps.

 

[Jcm800]

uggh

I am a member of 'Healing Well', also a qualified veterinarian. I realised that I had joined this forum sometime ago, and I apologise for taking the liberty of posting in your forum. Maybe I can give you a view, just based on my own experiences, to help you understand why many pain patients seemingly behave as they do.

I do wish to address ctts' remark about referring to his/her patients as 'crazy'. I am quite appalled that you do this - and even if it's not mean spirited I can only hope that you don't use it to your patients faces. I have widespread CRPS, spread from an arthroscopy. I was 14 when first injured, and had close to six years being told I was crazy because of medicos who couldn't concede that they didn't have answers. I know that being unable to resolve a case - or at least bring your patient a modicum of relief - can be incredibly frustrating on both a personal and professional level, but there are a frightening number of doctors (vets too, I'm ashamed to say) who will lay the blame for this at their patient's feet. Unless any of you has suffered with severe, relentless chronic pain, you cannot imagine the impact this has on one's well being - physical as well as mental.

Ducttape - you commented about many patients not wanting CBT, etc. I know that among some of the pain patients I interact with, especially those with CRPS, there is a fear when a psychologist or counsellor is mentioned of "Oh gosh...s/he thinks I'm depressed and crazy. If I see a shrink everyone will think I'm inventing my pain." Very few doctors - be they GP's or in PM seem to take the time out to explain that depression is a common response to chronic pain. Perhaps most patients you see in your practice refuse non-pharmacological interventions, and that's sad for sure. Perhaps the most important thing I've learnt in 14 years of severe pain is that a single pain management method alone doesnt work, Fibromyalgia - having been given a fibro diagnosis independently by my pain specialist, neurologist and GP, I would tend to believe in its existence, but it's not appropriate for me to come here and argue that point with you.

As to a patient coming in insistent on treatment X, Y or Z... To my mind, if you're cutting your patients off short, you're making them feel less valued, silly even. I used to get pet owners coming in - sure they'd found the answer to Fido's problems because they'd seen it on the 'net, or Mrs J next door had mentioned it - but usually taking the time to explain why it might not be appropriate makes alI the difference. I know the odd person will create problems because you don't given them what they want - but just consider for a moment that your patients may have been in pain for months, years with not a spot of relief. If they've been told of a supposedly effective drug, it's inevitable that they're going to ask about it. Ducttape, you've said it's presumptuous for a pain patient to assume that their doctor doesn't have chronic back or neck pain; yes, it it...but even allowing for how subjective pain is, those of us with severe and disabling pain can assume we have a level of pain well beyond that of our treating doctors,

Thanks for your time ladies/gents.

 

[Jcm800]

This kind of nonsense is why pain docs get burned out. you stick to your message board, and we can stick to ours. Maybe i should sign up for your board and start bitching about how all of the unemployed, drug seeking "chronic pain" patients should have their citizenship revoked. Think before you talk about our schooling and licenses. If i dont deserve to graduate, you dont deserve to live free of my taxes

I am a member of 'Healing Well', also a qualified veterinarian. I realised that I had joined this forum sometime ago, and I apologise for taking the liberty of posting in your forum. Maybe I can give you a view, just based on my own experiences, to help you understand why many pain patients seemingly behave as they do.

I do wish to address ctts' remark about referring to his/her patients as 'crazy'. I am quite appalled that you do this - and even if it's not mean spirited I can only hope that you don't use it to your patients faces. I have widespread CRPS, spread from an arthroscopy. I was 14 when first injured, and had close to six years being told I was crazy because of medicos who couldn't concede that they didn't have answers. I know that being unable to resolve a case - or at least bring your patient a modicum of relief - can be incredibly frustrating on both a personal and professional level, but there are a frightening number of doctors (vets too, I'm ashamed to say) who will lay the blame for this at their patient's feet. Unless any of you has suffered with severe, relentless chronic pain, you cannot imagine the impact this has on one's well being - physical as well as mental.

Ducttape - you commented about many patients not wanting CBT, etc. I know that among some of the pain patients I interact with, especially those with CRPS, there is a fear when a psychologist or counsellor is mentioned of "Oh gosh...s/he thinks I'm depressed and crazy. If I see a shrink everyone will think I'm inventing my pain." Very few doctors - be they GP's or in PM seem to take the time out to explain that depression is a common response to chronic pain. Perhaps most patients you see in your practice refuse non-pharmacological interventions, and that's sad for sure. Perhaps the most important thing I've learnt in 14 years of severe pain is that a single pain management method alone doesnt work, Fibromyalgia - having been given a fibro diagnosis independently by my pain specialist, neurologist and GP, I would tend to believe in its existence, but it's not appropriate for me to come here and argue that point with you.

As to a patient coming in insistent on treatment X, Y or Z... To my mind, if you're cutting your patients off short, you're making them feel less valued, silly even. I used to get pet owners coming in - sure they'd found the answer to Fido's problems because they'd seen it on the 'net, or Mrs J next door had mentioned it - but usually taking the time to explain why it might not be appropriate makes alI the difference. I know the odd person will create problems because you don't given them what they want - but just consider for a moment that your patients may have been in pain for months, years with not a spot of relief. If they've been told of a supposedly effective drug, it's inevitable that they're going to ask about it. Ducttape, you've said it's presumptuous for a pain patient to assume that their doctor doesn't have chronic back or neck pain; yes, it it...but even allowing for how subjective pain is, those of us with severe and disabling pain can assume we have a level of pain well beyond that of our treating doctors,

Thanks for your time ladies/gents.

 

[121985]

Emd123 - thank you. I can only guess at the dilemma this must pose for you. We do not have the same degree of problems here in Australia that you guys do, but it is a serious problem nonetheless. I cannot pretend to know the answer, can't pretend even that there -is- an answer. I guess this is where you need to really know your patients and have a good working relationship with them - and I appreciate that may sometimes be a difficult thing if the ratio of pain management providers to chronic pain patients is anything like what it is here.

Lobelsteve...I must have been the one they didn't see. Sure is generalised here. Sure wish it wasn't.

Jcm800 - I can only echo your own sentiments "UGGH"

The OP felt it may be helpful for you to know how you are viewed by patients. I'm telling you, and I'm telling you why. You'll be reassured to know that I don't live in the US so I'm not living off your taxes. I've also earned my way since I was 14. I didn't choose CRPS, nor a fractured spine, dysautonomia or any of my other issues...but I'll thank you for illustrating why some pain patients feel so jaded about the profession!

 

[lobelsteve]

Emd123 - thank you. I can only guess at the dilemma this must pose for you. We do not have the same degree of problems here in Australia that you guys do, but it is a serious problem nonetheless. I cannot pretend to know the answer, can't pretend even that there -is- an answer. I guess this is where you need to really know your patients and have a good working relationship with them - and I appreciate that may sometimes be a difficult thing if the ratio of pain management providers to chronic pain patients is anything like what it is here.

Lobelsteve...I must have been the one they didn't see. Sure is generalised here. Sure wish it wasn't.

Jcm800 - I can only echo your own sentiments "UGGH"

The OP felt it may be helpful for you to know how you are viewed by patients. I'm telling you, and I'm telling you why. You'll be reassured to know that I don't live in the US so I'm not living off your taxes. I've also earned my way since I was 14. I didn't choose CRPS, nor a fractured spine, dysautonomia or any of my other issues...but I'll thank you for illustrating why some pain patients feel so jaded about the profession!

Confirms wrong diagnosis. Fx. Dysautonomia. Sciwora with centrally mediated neuropathic pain. Lyrica. Prialt. No opiates. You're welcome.

 

[kedrin]

These are the lively conversations that I continue to come back to this section of the forums for.

 

[121985]

Confirms wrong diagnosis. Fx. Dysautonomia. Sciwora with centrally mediated neuropathic pain. Lyrica. Prialt. No opiates. You're welcome.

No, it doesn't. It confirms the need to retain an open mind and the need for further research.

Just so you are aware also...Fx occurred two years ago. Autonomic issues started appearing five years ago. CRPS onset...FOURTEEN years ago.

I'll leave you all to it now, apologise for intruding and thank you for tolerating me reasonably well. I hope it at least gives you something to think about. Be good to your patients and I hope they return the favour.

 

[SSdoc33]

I didn't choose CRPS, nor a fractured spine, dysautonomia or any of my other issues...QUOTE]

yes you did. you just haven't admitted it to yourself.

look, the frustration here comes from the fact that at this point, you don't really need a "pain doc". you think you do. society thinks you do. other docs think you do. what you really need is a good psychologist and PT/OT who can work with you to increase your function.

the frustrating part of our job is treating the mental health aspects of chronic pain. most pain docs really are not the greatest mental health providers. havent been really trained in it. dont really like it. also, and probably the most important -- it doesnt pay the bills. at least not here. you want to do something to try to change the system and provide better care, be an activist to get better re-imbursement for mental health care. until then, both the patients and the docs will be swimming upstream

 

[emd123]

.

 

[emd123]

(Messed up phone app)

 

[emd123]

.

 

[emd123]

.