Article: Pain patients with legal opioid prescriptions cut and suicide

[Lanny]

This is the first of a 3 part article.  It is about patients with severe pain issues, who have been taking legal pain medications, having their doses reduced or cut off.  Some of them are resorting to Suicide. The use of illegal drugs by people who are not pain patients is one thing. The use of legal drugs with people like those mentioned in this article is a very different matter.  Very sad.

https://www.foxnews.com/health/as-opioids-become-taboo-doctors-taper-down-or-abandon-pain-patients-driving-many-to-suicide

[Carol in Cal.]

I knew this would happen.  It’s awful.

[sassenach]

This infuriates me. My dh is a chronic pain patient and if he had to navigate a flare up without meds, I think he would be in danger. 

[Faith-manor]

I was afraid that this would be the outcome. Seems like the pendulum went too far one way so instead of looking for the middle ground, they went radical and it went too extreme the other way.

I have a son who is permanently disabled and will never be out of pain. He is insanely careful about not using opioids, and many days simply suffers because he can't just always take extreme doses of tylenol and advil because he'll box his liver and kidneys. So much pain. He's only 21, almost 22. He faces this for his entire life ahead, and once told me he really hopes to not live to a ripe old age because what would be the point of living like this. Very scary. Right now he manages on hot baths, ice packs, heating pads, and mild doses of advil as needed, benadryl to help him sleep. But he just barely manages and as more arthritis sets in, it is going to get exponentially worse.

My hope is that someday he will get a job in a foreign country with really good health care system and better pain management attention. Seems like here it is pretty much an all or nothing proposition. "Here's a big script for opioids or Suck it up buttercup!" We can't even get a referral to a pain clinic, nor for more physical therapy, aqua therapy (the number one thing that would help, but isn't offered within a two hour drive of her...we tried to force the medical and car insurance company to pay for at least a jacuzzi tub - in some states they have to do so - but got no where and right now we don't have the extra cash to do it ourselves), or biofeedback. Nothing. Haven't found a damn doctor that gives a crap about his pain.

The insurance not providing really makes me livid. I know people in other states who have even had indoor pools installed and the car insurance company had to pay for it. When he has access to lap swimming and jacuzzi, it really helps. But nothing. No help. Just suffer.

[Valley Girl]

5 minutes ago, Faith-manor said:

I was afraid that this would be the outcome. Seems like the pendulum went too far one way so instead of looking for the middle ground, they went radical and it went too extreme the other way.

I have a son who is permanently disabled and will never be out of pain. He is insanely careful about not using opioids, and many days simply suffers because he can't just always take extreme doses of tylenol and advil because he'll box his liver and kidneys. So much pain. He's only 21, almost 22. He faces this for his entire life ahead, and once told me he really hopes to not live to a ripe old age because what would be the point of living like this. Very scary. Right now he manages on hot baths, ice packs, heating pads, and mild doses of advil as needed, benadryl to help him sleep. But he just barely manages and as more arthritis sets in, it is going to get exponentially worse.

My hope is that someday he will get a job in a foreign country with really good health care system and better pain management attention. Seems like here it is pretty much an all or nothing proposition. "Here's a big script for opioids or Suck it up buttercup!" We can't even get a referral to a pain clinic, nor for more physical therapy, aqua therapy (the number one thing that would help, but isn't offered within a two hour drive of her...we tried to force the medical and car insurance company to pay for at least a jacuzzi tub - in some states they have to do so - but got no where and right now we don't have the extra cash to do it ourselves), or biofeedback. Nothing. Haven't found a damn doctor that gives a crap about his pain.

The insurance not providing really makes me livid. I know people in other states who have even had indoor pools installed and the car insurance company had to pay for it. When he has access to lap swimming and jacuzzi, it really helps. But nothing. No help. Just suffer.

 

Your poor boy. We do a crap job of treating pain. That there are non-drug things that CAN help and are refused... inexcusable. People in real pain need real meds. Monitor their use, of course. But don't deny them what is ultimately life-saving medicine. I'm so sorry.

[Valley Girl]

17 minutes ago, Æthelthryth the Texan said:

The irony is just mind blowing. Let's legalize weed so any idiot can have unfettered access anytime they want, but while we're at it changing things, then let's tie doctor's hands so they cannot care for their patients who they know and are responsible for treating, without the government breathing down their necks and threatening license suspension or jail time. Makes total sense. UGH. 😡 

Ain't it though? These people do their thinking out their .... well, fill in the blank.

[May]

I belong to a online support group for chronic pain suffers. The stories I hear there, make we weep. Many have had their meds reduced and are forced to ration. Lately, I’ve been reading that pharmacists are now challenging certain opioid prescriptions and lecturing the patient on how bad these drugs are for them🤬It’s not uncommon for many to voice their despair😔 Kratom, which isn’t legal in all states, seems to help many, along with CBD oil. Thankfully, I’ve been able to manage my pain levels to around 4 or 5 most days without drugs. 

[Junie]

2 hours ago, Faith-manor said:

I was afraid that this would be the outcome. Seems like the pendulum went too far one way so instead of looking for the middle ground, they went radical and it went too extreme the other way.

I have a son who is permanently disabled and will never be out of pain. He is insanely careful about not using opioids, and many days simply suffers because he can't just always take extreme doses of tylenol and advil because he'll box his liver and kidneys. So much pain. He's only 21, almost 22. He faces this for his entire life ahead, and once told me he really hopes to not live to a ripe old age because what would be the point of living like this. Very scary. Right now he manages on hot baths, ice packs, heating pads, and mild doses of advil as needed, benadryl to help him sleep. But he just barely manages and as more arthritis sets in, it is going to get exponentially worse.

My hope is that someday he will get a job in a foreign country with really good health care system and better pain management attention. Seems like here it is pretty much an all or nothing proposition. "Here's a big script for opioids or Suck it up buttercup!" We can't even get a referral to a pain clinic, nor for more physical therapy, aqua therapy (the number one thing that would help, but isn't offered within a two hour drive of her...we tried to force the medical and car insurance company to pay for at least a jacuzzi tub - in some states they have to do so - but got no where and right now we don't have the extra cash to do it ourselves), or biofeedback. Nothing. Haven't found a damn doctor that gives a crap about his pain.

The insurance not providing really makes me livid. I know people in other states who have even had indoor pools installed and the car insurance company had to pay for it. When he has access to lap swimming and jacuzzi, it really helps. But nothing. No help. Just suffer.

(((Faith-manor)))

Your son sounds so much like me.  I was a bit older when I was diagnosed (mid-30s).  I have RA (and I've been dealing with chronic migraines).  I won't take opioids either.  I react very strongly to medications and frankly, I'm afraid of them.  When I take Advil I count hours to make sure that I don't take it again too soon.  Hot showers are my best friend.

I used to belong to a gym where I could sit in a hot tub for an hour or more.  Yes, it was the best.thing.ever.

Water aerobics and Tai Chi classes were also very beneficial.

It sounds like your son's pain levels are higher than mine, and I'm glad that he has found some things that help without turning to pain meds.

I wish that we had better alternative health care programs -- including mental health programs -- for people with chronic illnesses.  My doctors try to help with the pain, but I wish they also offered some counseling on dealing with chronic pain.  There are things that I have learned along the way that would have helped me earlier on.  And I'm sure there are other coping devices that would make my life even better.

So many people with chronic pain rely on the meds alone to get them through and then when the meds are gone they have no coping devices.

 

[Lizzie in Ma]

20 hours ago, Faith-manor said:

I was afraid that this would be the outcome. Seems like the pendulum went too far one way so instead of looking for the middle ground, they went radical and it went too extreme the other way.

I have a son who is permanently disabled and will never be out of pain. He is insanely careful about not using opioids, and many days simply suffers because he can't just always take extreme doses of tylenol and advil because he'll box his liver and kidneys. So much pain. He's only 21, almost 22. He faces this for his entire life ahead, and once told me he really hopes to not live to a ripe old age because what would be the point of living like this. Very scary. Right now he manages on hot baths, ice packs, heating pads, and mild doses of advil as needed, benadryl to help him sleep. But he just barely manages and as more arthritis sets in, it is going to get exponentially worse.

My hope is that someday he will get a job in a foreign country with really good health care system and better pain management attention. Seems like here it is pretty much an all or nothing proposition. "Here's a big script for opioids or Suck it up buttercup!" We can't even get a referral to a pain clinic, nor for more physical therapy, aqua therapy (the number one thing that would help, but isn't offered within a two hour drive of her...we tried to force the medical and car insurance company to pay for at least a jacuzzi tub - in some states they have to do so - but got no where and right now we don't have the extra cash to do it ourselves), or biofeedback. Nothing. Haven't found a damn doctor that gives a crap about his pain.

The insurance not providing really makes me livid. I know people in other states who have even had indoor pools installed and the car insurance company had to pay for it. When he has access to lap swimming and jacuzzi, it really helps. But nothing. No help. Just suffer.

We are in the same boat with youngest.  She is always in pain.  I was paying $80 a week for acupuncture which did help somewhat but the stress of taking that time away from homework was killing her so she stopped going.  Not going to lie, the payment was a hardship for me. We have an old hot tub that would help but we can't afford to heat it right now.  The whole situation stinks.

[KidsHappen]

I am a chronic pain patient on prescription opioids for pain. It definitely was not my experience that they were passed out like candy. I literally tried everything else before being prescribed opioids. That included prescription strength NSAIDs which permanently damaged my esophagus and stomach to the point that I now have to have surgery on it about once a year and am now at an increased risk of cancer. Two years ago I had so much intestinal tract bleeding that my hemoglobin count was down to 6 and I was quite ill for a long period of time. Since my primary care physician can no longer write prescriptions for opioids I now have to go to a pain clinic. That is an extra roughly $150 a month plus I have to have do a full screen drug test twice each year which cost $2500 each. My pain dr. just told me at my last appointment that there are starting to receive pressure to decrease prescriptions and that even though I am the perfect patient (low stable dose without any problems) that eventually we may have to wean me off. I take just enough to make my pain bearable. Without it I am not sure I could function. I would certainly consider marijuana at that point even if it meant moving away from my home and family which I would be loathe to do. And yes I am very angry about the situation.Chronic pain patients are not the problem. Chronic pain patients are taking reasonable amounts of hydrocodone, oxycodone or even morphine that are strictly monitored by doctors. Drug addicts are taking either ridiculous amounts of the above drugs or more likely fentenyl. It should be fairly easy to distinguish between the two and manage both appropriately.

[J-rap]

I get why they've had to become so strict about prescribing them, but of course it is certainly more difficult for people who really need them.  It's a tough spot.  My dh, who would never in a million years become addicted to anything, had major bone (cranial) surgery last summer which put him in excruciating pain.  (Bone pain is supposedly pretty awful.)  The hospital gave him pain meds for 5 days and that was it.  The pain was horrible for much longer than that.  Apparently over-the-phone refill prescriptions are not allowed for that, so he couldn't get a refill unless we drove the 5 hours back to the prescribing hospital.   It was all so complicated and he was in so much pain, and there was a raging blizzard outside and nothing we could do about it, even though a pharmacy is literally 2 blocks from our home.

I think things often swing far to one side like this while trying to fix a problem.  Hopefully it'll settle into something more acceptable for those who really need it, down the road.

[melmichigan]

We need to do more all around to support and manage chronic pain.  We need to cover a wider range of treatments known to decrease dependence on medications.  We need to allow doctors to do what they think is best, period.

[Faith-manor]

And I do find it interesting that around here the dentists offer opioids like they are candy. The amount of prescription is staggering, yet they are never prosecuted. It's always the doctors dealing with people in chronic pain situations like orthopedic specialists that get into trouble. DS had a crown put on, and the dentist handed him a prescription for 21 days of hydrocodone. That's nuts! I hear this a lot from people about their dentists. My guess is that they are given very little training about the limited number of pharmaceuticals they are allowed to write scripts for, and may not stay on top of research surrounding the crisis or pain management because they aren't physicians and tend to not deal with long term situations.

I have also never had a pharmacist question a prescription from the dentist, but have had them argue ridiculously over my mother's prescription for pain meds after having total ankle joint replacement therapy. What gives? 

[Serenade]

10 minutes ago, Faith-manor said:

And I do find it interesting that around here the dentists offer opioids like they are candy. The amount of prescription is staggering, yet they are never prosecuted. It's always the doctors dealing with people in chronic pain situations like orthopedic specialists that get into trouble. DS had a crown put on, and the dentist handed him a prescription for 21 days of hydrocodone. That's nuts! I hear this a lot from people about their dentists. My guess is that they are given very little training about the limited number of pharmaceuticals they are allowed to write scripts for, and may not stay on top of research surrounding the crisis or pain management because they aren't physicians and tend to not deal with long term situations.

I have also never had a pharmacist question a prescription from the dentist, but have had them argue ridiculously over my mother's prescription for pain meds after having total ankle joint replacement therapy. What gives? 

 

Our dentist no longer prescribes opioids for pain. He used to give a small amount of opioids if there was a significant dental issue, but now he suggests ibuprofen or Tylenol.  

I think if the dentists are given more leeway with opioids, it might be because they tend to prescribe smaller amounts.  When he used to prescribe them, ours would prescribe a really small amount of pills -- like 6 or 10. Although I hear you that your dentist prescribed 21 days for your son!  Wow! 

[ktgrok]

On 12/10/2018 at 1:46 PM, May said:

I belong to a online support group for chronic pain suffers. The stories I hear there, make we weep. Many have had their meds reduced and are forced to ration. Lately, I’ve been reading that pharmacists are now challenging certain opioid prescriptions and lecturing the patient on how bad these drugs are for them🤬It’s not uncommon for many to voice their despair😔 Kratom, which isn’t legal in all states, seems to help many, along with CBD oil. Thankfully, I’ve been able to manage my pain levels to around 4 or 5 most days without drugs. 

I actually picked up some Kratom for my SI joint pain, which ibuprofen does pretty much nothing for. I had some vicodin left over from dental issues two years ago and that helped me sleep so I hoped the Kratom would as well. It does, but it's a "messier" pain reliever for sure. Vicodin makes me a bit happy and helps the pain. Kratom made me foggy, a bit nauseous, and not quite as good on the pain. I'd take it in a pinch, and do, for the few nights the pain is bad enough to keep me awake, but it definitely isn't the same as a clean pharmaceutical. 

On 12/10/2018 at 4:05 PM, Junie said:

(((Faith-manor)))

Your son sounds so much like me.  I was a bit older when I was diagnosed (mid-30s).  I have RA (and I've been dealing with chronic migraines).  I won't take opioids either.  I react very strongly to medications and frankly, I'm afraid of them.  When I take Advil I count hours to make sure that I don't take it again too soon.  Hot showers are my best friend.

I used to belong to a gym where I could sit in a hot tub for an hour or more.  Yes, it was the best.thing.ever.

Water aerobics and Tai Chi classes were also very beneficial.

It sounds like your son's pain levels are higher than mine, and I'm glad that he has found some things that help without turning to pain meds.

I wish that we had better alternative health care programs -- including mental health programs -- for people with chronic illnesses.  My doctors try to help with the pain, but I wish they also offered some counseling on dealing with chronic pain.  There are things that I have learned along the way that would have helped me earlier on.  And I'm sure there are other coping devices that would make my life even better.

So many people with chronic pain rely on the meds alone to get them through and then when the meds are gone they have no coping devices.

 

Yes! A group drop in "class" like some places do for nutrition, diabetes education, etc would be helpful for coping strategies and to combat the isolation many with chronic illness/pain deal with. 

37 minutes ago, Faith-manor said:

And I do find it interesting that around here the dentists offer opioids like they are candy. The amount of prescription is staggering, yet they are never prosecuted. It's always the doctors dealing with people in chronic pain situations like orthopedic specialists that get into trouble. DS had a crown put on, and the dentist handed him a prescription for 21 days of hydrocodone. That's nuts! I hear this a lot from people about their dentists. My guess is that they are given very little training about the limited number of pharmaceuticals they are allowed to write scripts for, and may not stay on top of research surrounding the crisis or pain management because they aren't physicians and tend to not deal with long term situations.

I have also never had a pharmacist question a prescription from the dentist, but have had them argue ridiculously over my mother's prescription for pain meds after having total ankle joint replacement therapy. What gives? 

I'm just grateful, since I can save the rest for when we need them and can't get a regular doctor to prescribe them. A bottle of twenty pills will last years here. 

I also think a problem in the USA is that our crazy work schedules/lifestyles don't leave any darned time or money for things like physical therapy. My SI joint pain would likely benefit from PT several times a week, and chiro care, but there is literally NO WAY I can make that work in my schedule, not to mention no way to afford it! Which means it is pain meds or suffer, or self treat using youtube videos (mainly what I'm doing). 

[Farrar]

I don't know a ton about this, but isn't some of this about the way the dosing was done - like, with time release? Also, for people who are already using to manage pain, isn't it the case that they've already built up a tolerance and so they can't easily taper down? Like, aren't these guidelines more accurately applied to new pain patients?

When I've read about this, it does seem like doctors were aware of the risks to chronic pain sufferers, but not aware of the risks of things like proscribing a ton of opiates to people who weren't chronic pain sufferers, like instead of giving a post routine surgery patient a very small dose and just a few tablets with the option to get more if needed, they were just giving out way too many at too high a dose right off the bat. And those were the people who then ended up at a much greater risk of getting hooked.

[sassenach]

1 hour ago, Ktgrok said:

I actually picked up some Kratom for my SI joint pain, which ibuprofen does pretty much nothing for. I had some vicodin left over from dental issues two years ago and that helped me sleep so I hoped the Kratom would as well. It does, but it's a "messier" pain reliever for sure. Vicodin makes me a bit happy and helps the pain. Kratom made me foggy, a bit nauseous, and not quite as good on the pain. I'd take it in a pinch, and do, for the few nights the pain is bad enough to keep me awake, but it definitely isn't the same as a clean pharmaceutical. 

Yes! A group drop in "class" like some places do for nutrition, diabetes education, etc would be helpful for coping strategies and to combat the isolation many with chronic illness/pain deal with. 

I'm just grateful, since I can save the rest for when we need them and can't get a regular doctor to prescribe them. A bottle of twenty pills will last years here. 

I also think a problem in the USA is that our crazy work schedules/lifestyles don't leave any darned time or money for things like physical therapy. My SI joint pain would likely benefit from PT several times a week, and chiro care, but there is literally NO WAY I can make that work in my schedule, not to mention no way to afford it! Which means it is pain meds or suffer, or self treat using youtube videos (mainly what I'm doing). 

We’ve stockpiled, too. Saving them for the day dh has a flare up and they refuse him an rx. Bonus- they’ll be crazy valuable during the zombie apocalypse (I kid). 

[May]

I’ve stock piled my Percocet. I only take it when I’ve been on my feet for 4 hours or more, two days in a row. I also have some Vicodin left over from hubby. Yes, I take others people’s prescriptions🎄

[moonflower]

16 minutes ago, sassenach said:

We’ve stockpiled, too. Saving them for the day dh has a flare up and they refuse him an rx. Bonus- they’ll be crazy valuable during the zombie apocalypse (I kid). 

 

Don't kid!  The idea that the system is not entirely stable is not exactly crazy-talk; many government agencies warn you to take precautions in case things break down for a few weeks due to who knows what.  If you had a major injury during that time, or your neighbors did, stockpiled antibiotics and pain pills (more the antibiotics, honestly) would be a godsend.

[ktgrok]

7 minutes ago, May said:

I’ve stock piled my Percocet. I only take it when I’ve been on my feet for 4 hours or more, two days in a row. I also have some Vicodin left over from hubby. Yes, I take others people’s prescriptions🎄

Yup. Also been known to use the dog's meds on humans in this house. 

Our medical system is so whacked. 

[Faith-manor]

7 minutes ago, Ktgrok said:

 

Our medical system is so whacked. 

Exactly this. Whacked! Honestly, my dog gets far better care and concern from his veterinary practice, than I get from any doctor I've ever been to which is just nuts. But, between the insurance industry, the AMA, the FDA, and the DEA all with fingers in the pie and pulling on docs like marionettes, I guess we can't expect much. Sometimes I'm absolutely shocked anyone still bothers to attend medical school anymore!

[ktgrok]

1 hour ago, Faith-manor said:

Exactly this. Whacked! Honestly, my dog gets far better care and concern from his veterinary practice, than I get from any doctor I've ever been to which is just nuts. But, between the insurance industry, the AMA, the FDA, and the DEA all with fingers in the pie and pulling on docs like marionettes, I guess we can't expect much. Sometimes I'm absolutely shocked anyone still bothers to attend medical school anymore!

Agreed. The thing I miss most about working for a veterinary practice was the accessibility of certain medication for...um..my pets. 

Eye ointment is eye ointment is eye ointment, you know? Or antibiotic ointment, or burn cream, etc. Spending hundreds of dollars and many many hour on an ER visit to get a script for burn cream, when it is obviously not going to require anything more than that chaps my hide, lol. 

I AM very thankful for Teledoc and similar services, which allow me to get some things from the comfort of home at least, rather than taking myself or a sick child to the doctor where we have to sit forever. During flu season last year we were able to get anti-nausea meds called in with that service, which was such a blessing. 

[melmichigan]

4 hours ago, Farrar said:

Like, aren't these guidelines more accurately applied to new pain patients?

I believe that was some of the original intent, to prevent dependence, but that objective is being lost and applied across the board with chronic pain patients.

I can only take prescription NSAID’s three days out of the month because of what they do to my stomach and the risk of fatal bowel perforation.  I take Baclofen successfully for pain the majority of the time, but occasionally have to take opioids to function.  It was better when my insurance paid for prescribed massage therapy (I can’t afford that out of pocket), but I faithfully do yoga, hot showers, thermocoil treatments, you name it to help cope. My doctor retired and next week will be my routine three month appointment and required drug screening.  It will also be the first time I’ve requested a refill from my new doctor.  It should be interesting.  I’ve managed these medications successfully and responsibly for almost 20 years, without increasing my dosages, but that counts for little these days.

My sister is a chronic pain patient. She has a non-operable congenital abnormality.  They switched her to morphine because of the stigma and regulation attached to hydrocodone.  She was a zombie!  She was finally put on the non-crushable long-acting form of hydrocodone because she couldn’t function or do her job because she was so drugged out on morphine, but to the medical community that was better for their drug counts!

Sadly, I know people that are crossing the border and buying codeine over the counter because their doctors are cutting their medications.  Like others have said, my daughter came home with a large bottle of Norco after she had her wisdom teeth pulled. 🤦🏼‍♀️

Edited December 12, 2018 by melmichigan