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hppygr8ful hppygr8ful (Guide) Guide

Pain patients being denied their medication!

Pain   (5,912 Views 47 Comments)
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I have heard of this happening all over the US- but I didn't think it would happen to me!

My old Dr. who was also a pain management specialist retired and my new Dr. who is not a Pain management doctor calls me in and tells me that the CDC has a new recommendation that no person be on long term opioid management and he plans to take me off my opioid by the end of the month. This is a regimen that my old Dr and I came to after trying every non-narcotic option and it's working. I only went to opioids when the pain became so excruciating that I couldn't get out of bed, was not sleeping and had reached a point of near suicidal depression. For the last year I've been as close to pain free as I have ever been with no issues what so-ever. But I agreed to try it his way and see if I could

manage without the opioid

Caveat being he will send me to a pain management doctor if the pain returns. Then I find out the co-pay for the PM evaluation is a thousand dollars! I sent my doc an email stating that since going off an effective regimen was not my idea - I expected my insurance company to eat the cost of the eval.

 

Then I read the CDC recommendation which said nothing about opioid never being used for chronic pain but rather they should not be the first line treatment.

 

I feel totally defeated that I have to let this doctor who is half my age and probably has no experience with chronic unremitting pain. Tell me all this without even doing a proper history and physical.

 

Hppy

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While I empathize with the situation, the reality is that evidence shows that opiate therapy isn't an effective option for long term pain management. Given the current climate, everyone from providers to pain patients need to rethink their ideas of pain and options to minimize that pain. Maximizing multimodal therapies as well as holistic approaches need to be explored and tailored to individual patients. Use off opiates may be appropriate for breakthrough situations while other therapies are being utilized, but not at the levels many are getting (often 30-60 pills a month). If you need opiates, I'd argue your pain isn't being managed and you need a better workup.

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Rethinking is not the same as telling a patient she is not experiencing what she is experiencing, as well as completely discounting what she just told you. For her, opioids are an effective way to deal with breakthrough pain, which is not the same as using opioids as first-line treatment of chronic pain.

You won't get very far in managing chronic severe pain if you don't learn to listen to what's going on and avoid slotting patients into your little pre-determined boxes.

ETA: frankly, I think a big unmentioned factor in iatrogenic opioid problems is lazy practitioners using a one-size-fits-all approach to treating chronic pain. That and the greasy wheel syndrome that keeps the patient high and happy, thus out of the practitioner's face.

Edited by heron

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Rethinking is not the same as telling a patient she is not experiencing what she is experiencing, as well as completely discounting what she just told you. For her, opioids are an effective way to deal with breakthrough pain, which is not the same as using opioids as first-line treatment of chronic pain.

You won't get very far in managing chronic severe pain if you don't learn to listen to what's going on and avoid slotting patients into your little pre-determined boxes.

ETA: frankly, I think a big unmentioned factor in iatrogenic opioid problems is lazy practitioners using a one-size-fits-all approach to treating chronic pain. That and the greasy wheel syndrome that keeps the patient high and happy, thus out of the practitioner's face.

I've gotten pretty far managing chronic pain for an array of patients over the past 2+ years doing the exact things I described and reducing opiate use. Studies are backing CDC pushes to reduce opiate use and they should have never been used to the extent they are now in the first place. She never indicated she was strictly taking opiates for "breakthrough". Only that she tried all others out there first. I don't discount the fact that opiates are helping her. I think they would help a lot of people because being numb is certainly better than pain. But the risk of overdose, addiction, and long-term side effects of opiate use make them a non-starter.

For someone with chronic pain, it will never completely go away. The goal is always pain reduction with function improvement. The conversation she had with her provider of "if it comes back, I will refer you" tells me she was punted by someone who really doesn't get this concept (and maybe she has unrealistic expectations of pain management). Multi-modal therapies (multiple drugs at the same time) plus holistic approaches (acupuncture, massage, physical conditioning/therapy, mental health medicine) can all be utilized to round out the picture and improve outcomes.

Greasy wheel syndrome and provider laziness is why we are in this predicament. And certainly something I am not willing to be a part of.

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I still think that your response to the OP reflected a distinct lack of attention to what the OP actually said about her opioid use.

And two years experience is a drop in the bucket - barely enough to know what you don't know. I have 18 year's experience in clinical setting where pain management was a critical part of our work: hospice x 7 years, end-stage AIDS x 11 years. While I'm no APRN, I've seen enough to know that such a categorical dismissal of the appropriate use of opioids is every bit as lazy as throwing OxyContin at every sprained wrist just to shut the patient up.

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I still think that your response to the OP reflected a distinct lack of attention to what the OP actually said about her opioid use.

And two years experience is a drop in the bucket - barely enough to know what you don't know. I have 18 year's experience in clinical setting where pain management was a critical part of our work: hospice x 7 years, end-stage AIDS x 11 years. While I'm no APRN, I've seen enough to know that such a categorical dismissal of the appropriate use of opioids is every bit as lazy as throwing OxyContin at every sprained wrist just to shut the patient up.

To be fair, I have 9 years total working in settings where pain management was essential. My actual management experience was off of the past 2 years working in in/outpatient pain as well as now primary care (since we're puffing our chests and throwing out numbers). And I never categorically dismissed the use of opiates. I categorically called for the appropriate use of opiates for the right situation. Those situations include new onset acute pain and for significant breakthrough pain where all other medications actively being utilized fail to improve (both of which are short/limited duration situations). I also noted the importance of tailoring these regimens to the patient and the simple fact that opiate management is not pain management.

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The provider has a right to determine what they are comfortable with and you have a right to find another provider to take over your care.

And that isn't meant to not show sympathy. But if the provider isn't comfortable adopting a plan of care, they should not do it. Wish you best of luck.

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I recently heard excerpt on NPR from a local MD conference, which was aimed at stopping opiods from being prescribed for chronic pain.

The doctor speaking said that physical therapy could be used instead of opioids.

Right... the cause of my chronic pain was misdiagnosed for many years. I was sent to physical therapy over and over again.

This only served to exacerbate the problem, and make the pain worse.

I have spent thousands out-of-pocket on every OTC, and alternative therapy available. None of it has worked.

With practitioners cutting people off of opioids, without coming up with effective alternatives, FIRST- I predict that a lot of people desperate for pain relief may turn to street drugs, or purchasing pharmaceuticals on the street.

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FIRST- I predict that a lot of people desperate for pain relief may turn to street drugs, or purchasing pharmaceuticals on the street.

(That's already been happening, for a long time.)

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(That's already been happening, for a long time.)

Word. I have mixed feelings about this because people are in this position because for so, so long opioids were pushed by big pharma (hellllo, oxycontin!) and labeled as "safe" by JCAHO. Won't get into the politics of all that except to say now we have a literal and figurative mess on our hands. The healthcare industry aided and abetted in this crisis and what the crap are we going to do about it now?

I watched a TED talk on chronic pain several years ago and it was fascinating... About chronic pain being a disease itself and showed this amazing example of a girl that sprained her wrist and how it adversely affected her life and then what they did to fix it. It's Elliot Krane and the mystery of chronic pain. It's fascinating.

To the OP, I am sorry you're in this situation. I feel that this is going to be increasingly more common in the next few years and I do hope you are able to find a way to successfully live your life opiate-free, or at least opiate-almost free. There have to be answers out there somewhere.

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While I empathize with the situation, the reality is that evidence shows that opiate therapy isn't an effective option for long term pain management. Given the current climate, everyone from providers to pain patients need to rethink their ideas of pain and options to minimize that pain. Maximizing multimodal therapies as well as holistic approaches need to be explored and tailored to individual patients. Use off opiates may be appropriate for breakthrough situations while other therapies are being utilized, but not at the levels many are getting (often 30-60 pills a month). If you need opiates, I'd argue your pain isn't being managed and you need a better workup.

Thank you for your input however I have been on every non-narcotic medicine known. And my pain management journey started when I fell from a horse at thirteen, Had my skull and spine fractured in an abusive assault by my own mother when I was 14. I have never relied on opiates until two years ago. I've done all the alternatives you mention and while some work for a time none work effectively by themselves. I hardly think you know what I have been through and quiet frankly I've read those studies. While they may not be appropriate for some patients they are absolutely appropriate for patients that could not be helped by non-narcitc medications. Before I went to taking 2 5/325 norco a day two years ago I was taking up to 5000mg of Tylenol and over 1000 mg of Ibuprophen. I was developing fatty liver and kidney problems from these alternatives. I eat a hollistc diet, exercise and have been throughly worked up by a PMS. Along with the opiate I use a TENS machine. The past two year with low dose Opiet therapy have been almost pain free. Contrary to the current popular belief Addiction is actually quite rare when opiates are used to treat legitimate pain in a responsible manner.

I work psych and one thing I never do is try to tell my patients who have a working regimin that they should change their meds because studies show they don't work as well as we once thought when for that patient they are clearly working. One of the joint commission and CMS standards is that patient care be patient centered and individualized. These new guidelines do not meet that standard. In fact just this year our own hospital got cited for not providing adequate pain relief because we did not give opiates when non-narcotic options were clearly not treating a patients pain.

Before you try to tell what some study says about my pain management _ I invite you to walk a day, week or maybe a year with widespread, chronic unremitting pain and get back to me.

Not meaning to go off on you but you might want to actually talk to some us rather than think the studies tell you everything you need to know.

If I could find something that worked better at helping me be a functional human being I would do it in a heart beat. But I will not go back to the zero quality of life two years ago.

Hppy

Edited by hppygr8ful

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