Post by downtoearth on May 1, 2018 10:54:20 GMT -5
I am so sad this morning. Found out that a person I graduated high school with died last week after suffering with intractable chronic pain and being part of state and federal programs to combat pain. I'm pretty sure she committed suicide, and yet she was masking her pain since the last time I saw her was not long ago and her infectious smile was beaming as she introduced me to her son.
This is almost exactly on the 1-yr anniversary of a family friend who committed suicide due to 10 years of chronic pain.
Both were amazing people with healthcare resources (healthcare coverage, doctors, etc), and involved in communities and state groups to combat pain, and both have supportive children and families.
So why aren't we able to fix this? What happens with chronic pain that we can't make it better? Are we unique in the world that we have this problem more prevalent in the US then elsewhere?
You can't reduce funding for research, reduce peoples' healthcare coverage, etc. and then take away the only pain management they have left. Then the only place they have to go is the black market to find heroin or the fentanyl analogues and lead to more overdosing.
A personal story along these lines: a friend of mine has a condition which (among other things) affects her skin so she does not heal normally from wounds. Last year, she had to switch to a different brand of pain patch when there was a shortage. Her skin had a bad reaction to this patch, and she is still in pain today from the damage just due to that reaction.
Nurse Cramer had stopped speaking to Nurse Duckett, her best friend, because of her liaison with Yossarian, but still went everywhere with Nurse Duckett since Nurse Duckett was her best friend....Nurse Cramer was prepared to begin talking to Nurse Duckett again if she repented and apologized.
Post by mrs.jacinthe on May 1, 2018 11:49:10 GMT -5
I think the problem is prevalent in most developed countries, just perhaps not as prevalently discussed as here in the US. I read a white paper a year or so ago indicating 1 in 5 in the EU suffers from chronic pain and a majority feel that it is under- or mis-treated.
The problem, if we're honest, is going to be changing the entire approach healthcare has to pain. First, there are the doctors that throw pills at every problem, then, at the other end of the spectrum you have doctors that won't prescribe pills for ANY problem. Very few "traditional" MDs will utilize a holistic or multi-faceted approach to pain of any kind, and a great deal perceive patients complaining of pain as either a) whiners or b) pill seekers or c) both. Western medicine just doesn't handle this issue well in any respect.
I don't know if this is exactly what you are talking about, but my mom suffers from a lot of random health issues. Recently (starting in late February) she started having excruciating pain in her lower back. Nobody has been able to figure out why. She has been bounced between several specialists (and of course, it took 1-2 weeks between each appointment) and nobody has been able to put together what the issue is. It's gotten better on its own, and she's had 2 rounds of injections that also seem to help a little, but it's still not back to normal and she's still very limited.
I think that due to the way specialists work (and the way health insurance works with specialists) she has not been able to get a holistic assessment of her pain and what may be causing it. Everyone has pointed her in the direction of someone else, and none of them are talking to each other beyond sending along notes in a chart. It seems crazy to me that in 2018, with all our technology and medical resources, nobody can tell her why she has this pain and what can be done about it. But nobody seems overly interested in going above and beyond to figure it out, either. They just do their short appointment with her and refer her to someone else to be someone else's problem. Meanwhile she's been suffering and her life has been greatly impacted for like 10-11 weeks now.
I don't think that's the entire problem and maybe even with a better system, chronic pain would be an issue. But I do suspect our broken health system prevents a lot of people from getting to the bottom of their problems and receiving appropriate treatment, in a timely way. I don't blame the doctors, as I assume most of them do want to help patients, but their hands are bit tied within this system.
I don't know if this is exactly what you are talking about, but my mom suffers from a lot of random health issues. Recently (starting in late February) she started having excruciating pain in her lower back. Nobody has been able to figure out why. She has been bounced between several specialists (and of course, it took 1-2 weeks between each appointment) and nobody has been able to put together what the issue is. It's gotten better on its own, and she's had 2 rounds of injections that also seem to help a little, but it's still not back to normal and she's still very limited.
I think that due to the way specialists work (and the way health insurance works with specialists) she has not been able to get a holistic assessment of her pain and what may be causing it. Everyone has pointed her in the direction of someone else, and none of them are talking to each other beyond sending along notes in a chart. It seems crazy to me that in 2018, with all our technology and medical resources, nobody can tell her why she has this pain and what can be done about it. But nobody seems overly interested in going above and beyond to figure it out, either. They just do their short appointment with her and refer her to someone else to be someone else's problem. Meanwhile she's been suffering and her life has been greatly impacted for like 10-11 weeks now.
I don't think that's the entire problem and maybe even with a better system, chronic pain would be an issue. But I do suspect our broken health system prevents a lot of people from getting to the bottom of their problems and receiving appropriate treatment, in a timely way. I don't blame the doctors, as I assume most of them do want to help patients, but their hands are bit tied within this system.
I think, as well, that a lot of specialist visits are part of a "root cause analysis" situation. The specialist is going to run tests and look into things that could be _why_ the pain is happening, because once the why is figured out, fixing that should cause the pain (or other symptom) to be relieved.
Except, with Chronic conditions, there isn't always a root cause that can be found. So eventually, you might find a doctor that is willing to treat the symptoms with various medications, but until then you are stuck with a _lot_ of appointments, missed work, continuing pain (or whatever), and a lot of costly tests. In the meantime, as a patient, you begin to question your symptoms, trying to figure out if it's really as bad as you think it is, and maybe you could just quit pushing for a resolution because it's starting to feel like you're a bit crazy trying to drive on and on towards some solution thru umpteen doctors appointments and questions and pokes and prods and tests. It begins to feel like a goose chase, as you go from specialist to specialist, because the symptoms are vague enough it could be an issue that falls under a dozen different specialties, and each time you go to a new specialist, you have to repeat all the steps taken so far. And that is once you can get to _see_ the specialists, as many have waiting times for appointments that can add weeks to months to your progress towards figuring things out. And then trying out various treatments takes a span of time, as well, where you get to see if this medication at that dosage will reap the expected relief, or not. And then back to the doctor to repeat the process with a different medication, or a different dosage. Over and over again.
You have to be insanely proactive about your condition to get thru all the hoops and tests and so forth. It's almost an obsession, or has to become one, in order to keep pushing for a resolution.
I don't have chronic pain. I suspect I'm damn close to a chronic fatigue diagnosis, as far as I can tell, because they seem to be running out of specialists they can send me to, and running out of lab tests they can run that will find a root cause. Lab tests so far have indicated multiple minor issues, so I'm now on 7 different daily medications and supplements and one monthly injection at various doctors' directions, which I'll admit have helped. But, while my numbers and levels and all of that have improved to the point they're all telling me my labs look great, I'm still tired. All day, every day. It's grinding. If I overdo it one day, I pay for it by being utterly useless the following day (or two). And it's beginning to feel like the docs don't believe me when I say I still have symptoms. There are days when I wonder if maybe this is just what normal is supposed to be, even if it's a shadow of the energy levels I've had before. Maybe I should just accept this is as good as it gets. Or maybe there is some other potential cause to check into, to see if perhaps something else might be the reason for the fatigue. Get hopeful for a solution, take a month or two to see the specialist, another couple weeks to get the tests run, and then another medication to try out, and see if it makes things better over the next 2-3 months... And, as often as not, get those hopes dashed when I'm still dragging ass after that 5 months of trying, testing, and hoping.
At least I'm just tired. If I was dealing with constant pain thru all of this, I don't know how I'd hold on to any kind of normalcy.
I am so sad this morning. Found out that a person I graduated high school with died last week after suffering with intractable chronic pain and being part of state and federal programs to combat pain. I'm pretty sure she committed suicide, and yet she was masking her pain since the last time I saw her was not long ago and her infectious smile was beaming as she introduced me to her son.
This is almost exactly on the 1-yr anniversary of a family friend who committed suicide due to 10 years of chronic pain.
Both were amazing people with healthcare resources (healthcare coverage, doctors, etc), and involved in communities and state groups to combat pain, and both have supportive children and families.
So why aren't we able to fix this? What happens with chronic pain that we can't make it better? Are we unique in the world that we have this problem more prevalent in the US then elsewhere?
I don't think she was masking it.
My mother struggles with chronic pain. She is always in some measure of pain but she can still smile and enjoy things.
But she's so frustrated and it's become even moor difficult to get meaningful relief now that we're suddenly concerned with white people drugs.
I don't know what the answer is but my mother has had a headache for over ten years.
Just a dumb question, since my experience/knowledge only applies to chemo, tumors, and seizures, but is weed helpful for some types of chronic pain?
Yes. But many traditional doctors have written it off and will dismiss those who use it for chronic pain as "druggies". (I say this as someone who has spent over a decade reviewing medical records.)
Just a dumb question, since my experience/knowledge only applies to chemo, tumors, and seizures, but is weed helpful for some types of chronic pain?
Yes. But many traditional doctors have written it off and will dismiss those who use it for chronic pain as "druggies". (I say this as someone who has spent over a decade reviewing medical records.)
I also think it's illegal to study it medically at this point, because of its classification? Which seems insane.
Just a dumb question, since my experience/knowledge only applies to chemo, tumors, and seizures, but is weed helpful for some types of chronic pain?
This is a double edged sword. Weed is frequently been recommended by some in my hip group as quite effective. The big problem is that many with chronic pain sign a pain management contract that they will use their meds, and only those. Their prescriptions are held hostage by the results of their regular drug tests....which also screen for illicit drugs.
Then you have people in professions where there cannot be a positive tested, and they are randomly tested regularly. DH is in such a profession, and a positive test results in firing.
Just a dumb question, since my experience/knowledge only applies to chemo, tumors, and seizures, but is weed helpful for some types of chronic pain?
Yes. But many traditional doctors have written it off and will dismiss those who use it for chronic pain as "druggies". (I say this as someone who has spent over a decade reviewing medical records.)
I'll tell you what, it most definitely is not. (I know you know that.)
My mom has fibromyalgia. Has since I was a young child. She's been on a highly addictive sleep aid for most of my life because of it. She has tried over and over again to get off of it, but no amount of time or incrementally decreasing her dosage has worked. She always ends up unable to sleep, in severe pain the next day, and exhausted.
She recently decided to try marijuana to help ease off this drug. It worked! And it took her less than a month to get off of it! I swear to God, it's a fucking miracle. I am shocked that it worked so well.
But that's the problem with medicine in this country, right? She's afraid to tell her doctor because he's in Texas and she doesn't want it in her chart there, even though she lives in New Mexico where it's legal. So he can't suggest it as a viable option to his other patients who are struggling with the same thing.
My mom has had chronic pain for most of my life. She manages it well and has seen some relief over the years by doing various things, trying new drugs, increasing exercise, and changing her diet. Realistically though, she is always going to be in pain to some degree. She handles it incredibly well.
Idk if this is the type of answer you’re looking for but part of the reason that chronic pain develops and is so hard to treat, simplistically, is because it tends to be the result of changes in the nerves themselves such that they are essentially more sensitive to stimulus. This looks different in different people (for example in some there is an exaggerated response to painful stimulus, in some a non-painful stimulus is perceived as painful, etc.).
This tends to occur as a result of an acute pain stimulus in many patients that for some reason causes those particular changes in their particular nerves. This is called central sensitization and actually is a process that is enhanced by opioids. We don’t understand exactly why this happens or why it affects some more than others. We do know that opioids can cause hyperalgesia (an exaggerated neuronal response to painful stimulus causing it to feel more painful than it “actually” is) and that many opioids can also cause hyperalgesia.
We also see in the literature that, simply speaking, those patients who experience chronic pain tend to experience similar levels of pain while on chronic opioids. This is a large part of the reason that many pain physicians are moving away from opioid use although there is obviously also the element of the current crackdown on prescribers. There’s not a lot of data on marijuana for the aforementioned reasons. Ketamine is one drug that has a lot of promise in terms of “resetting” pain receptors but it’s a controlled substance that is challenging to administer in an outpatient setting - it’s an anesthetic and requires appropriate monitoring.
Post by imobviouslystaying on May 1, 2018 22:07:20 GMT -5
My mother's current frustration lies in the amount of doctors who sit her down and carefully explain that opioids are dangerous, provide no relief, cause rebound headaches, and imply that only abusers keep using them. Then they tell her they don't have anything they can/will give her and to see her neurologist.
Except that her neurologist looked over her records when she moved here, said he had nothing he could do for her and dropped her as a patient.
His is the only neurology office in our area. I take my son out of state to see his.
She's trying pain management for the third or fourth time in her migraine/fibro career.
Most doctors she's encountered fundamentally do not believe her when she tells them she's always in pain. She gave up years ago on being pain free. She just wants it at a manageable level.
My mother's current frustration lies in the amount of doctors who sit her down and carefully explain that opioids are dangerous, provide no relief, cause rebound headaches, and imply that only abusers keep using them. Then they tell her they don't have anything they can/will give her and to see her neurologist.
Except that her neurologist looked over her records when she moved here, said he had nothing he could do for her and dropped her as a patient.
His is the only neurology office in our area. I take my son out of state to see his.
She's trying pain management for the third or fourth time in her migraine/fibro career.
Most doctors she's encountered fundamentally do not believe her when she tells them she's always in pain. She gave up years ago on being pain free. She just wants it at a manageable level.
This is a perfect example of the kind of patient experience I was referring to above.
Your poor mother. I'm so sorry. All I can offer is my understanding and sympathy for her as traditional medicine fails her and the anecdotal story that I have a friend in the massage industry who has had great relief with cbd massage for her fibro.
Post by downtoearth on May 1, 2018 23:42:10 GMT -5
Thanks for all the similar stories and information on chronic pain management and the background on drugs and treatment. It is still so frustrating and disappointing that we don’t have answers and can’t help people in chronic pain.
I was just reading these interesting articles to try and better understand... one came out today.
Idk if this is the type of answer you’re looking for but part of the reason that chronic pain develops and is so hard to treat, simplistically, is because it tends to be the result of changes in the nerves themselves such that they are essentially more sensitive to stimulus. This looks different in different people (for example in some there is an exaggerated response to painful stimulus, in some a non-painful stimulus is perceived as painful, etc.).
This tends to occur as a result of an acute pain stimulus in many patients that for some reason causes those particular changes in their particular nerves. This is called central sensitization and actually is a process that is enhanced by opioids. We don’t understand exactly why this happens or why it affects some more than others. We do know that opioids can cause hyperalgesia (an exaggerated neuronal response to painful stimulus causing it to feel more painful than it “actually” is) and that many opioids can also cause hyperalgesia.
We also see in the literature that, simply speaking, those patients who experience chronic pain tend to experience similar levels of pain while on chronic opioids. This is a large part of the reason that many pain physicians are moving away from opioid use although there is obviously also the element of the current crackdown on prescribers. There’s not a lot of data on marijuana for the aforementioned reasons. Ketamine is one drug that has a lot of promise in terms of “resetting” pain receptors but it’s a controlled substance that is challenging to administer in an outpatient setting - it’s an anesthetic and requires appropriate monitoring.
The wind up phenomenon. This topic is so fascinating to me. And ketamine has so much potential in this area specifically. Although I remember when this drug was frequently abused also and no doubt it would continue if widely used.
Idk if this is the type of answer you’re looking for but part of the reason that chronic pain develops and is so hard to treat, simplistically, is because it tends to be the result of changes in the nerves themselves such that they are essentially more sensitive to stimulus. This looks different in different people (for example in some there is an exaggerated response to painful stimulus, in some a non-painful stimulus is perceived as painful, etc.).
This tends to occur as a result of an acute pain stimulus in many patients that for some reason causes those particular changes in their particular nerves. This is called central sensitization and actually is a process that is enhanced by opioids. We don’t understand exactly why this happens or why it affects some more than others. We do know that opioids can cause hyperalgesia (an exaggerated neuronal response to painful stimulus causing it to feel more painful than it “actually” is) and that many opioids can also cause hyperalgesia.
We also see in the literature that, simply speaking, those patients who experience chronic pain tend to experience similar levels of pain while on chronic opioids. This is a large part of the reason that many pain physicians are moving away from opioid use although there is obviously also the element of the current crackdown on prescribers. There’s not a lot of data on marijuana for the aforementioned reasons. Ketamine is one drug that has a lot of promise in terms of “resetting” pain receptors but it’s a controlled substance that is challenging to administer in an outpatient setting - it’s an anesthetic and requires appropriate monitoring.
The wind up phenomenon. This topic is so fascinating to me. And ketamine has so much potential in this area specifically. Although I remember when this drug was frequently abused also and no doubt it would continue if widely used.
Yeah ketamine is an amazing drug. Great for surgical analgesia, good evidence for chronic pain/depression/PTSD. Definitely more labor and time intensive to administer though, and also definitely still with abuse potential.
I am not a MD but I imagine there is also an element of how research is funded in the US. Research funded by drug companies is usually aimed at finding new drugs that can be sold for profit (as opposed to solving underlying problems so no further treatment is needed). Of course NIH and other government agencies and non-profits do fund research looking for cures, but we are too focused on cutting taxes and relying on capitalist approaches, IMO.
I have hypothyroidism and it affects so much. However, instead of treating the thyroid, I have had many doctors want to treat the underlying symptoms. And this is a disease that has a simple blood test to help manage. It seems like a lot of healthcare wants to treat each problem piecemeal, which does nothing for helping the patient feel better overall. Despite that fact that I have been to several different doctors, not a single one has actually even considered looking for a root cause. I do not push for that because there really is not much that would change in treatment, but it seems like a big piece of the puzzle to me, if not for current patients, then for future patients.
I think my experience speaks to the way healthcare is run in this country. Basically, we just want the patients to stop complaining and give them medicine, occasionally diet and exercise advice, and send them on their way. And sometimes that diet advice is terrible, like the last time I saw a dietician. I have food sensitivities and everything she suggested I start eating had something that I cannot digest in it. I left that office crying and I am sure that she thought I was just wanting to eat nothing but junk food and that is why I was upset. Other than the specific things she suggested, she told me to use Google to find recipes. That is the most useless advice I have ever gotten from anybody in my life. I already was using Google, but if not then I would have been using some type of cookbook. I know I should probably try to schedule another dietician appointment, but after that disaster, I am afraid to do so.
Post by discogranny on May 2, 2018 10:29:27 GMT -5
I feel like the attention the opioid epidemic is getting is a double-edged sword. I can't personally speak to chronic pain, but I recently had a severe foot injury that required surgery and months of rehab. The surgeon was extremely strict about the number of pain pills he would prescribe and once that allotment ran out (7 days worth for immediate post-surgery pain), if I requested even one additional pill I had to be referred to a pain doctor. He was so adamant about it, I ended up just dealing with the longer-term pain and suffered a bout of depression that left me in a bad place.
If my experience is anything close to what those with chronic pain are dealing with, I can see how we are failing them.
I have hypothyroidism and it affects so much. However, instead of treating the thyroid, I have had many doctors want to treat the underlying symptoms. And this is a disease that has a simple blood test to help manage. It seems like a lot of healthcare wants to treat each problem piecemeal, which does nothing for helping the patient feel better overall. Despite that fact that I have been to several different doctors, not a single one has actually even considered looking for a root cause. I do not push for that because there really is not much that would change in treatment, but it seems like a big piece of the puzzle to me, if not for current patients, then for future patients.
I think my experience speaks to the way healthcare is run in this country. Basically, we just want the patients to stop complaining and give them medicine, occasionally diet and exercise advice, and send them on their way. And sometimes that diet advice is terrible, like the last time I saw a dietician. I have food sensitivities and everything she suggested I start eating had something that I cannot digest in it. I left that office crying and I am sure that she thought I was just wanting to eat nothing but junk food and that is why I was upset. Other than the specific things she suggested, she told me to use Google to find recipes. That is the most useless advice I have ever gotten from anybody in my life. I already was using Google, but if not then I would have been using some type of cookbook. I know I should probably try to schedule another dietician appointment, but after that disaster, I am afraid to do so.
I think at the end of the day, they've been told what not to do, not what to do instead.
Another of my mother's issues is that she's allergic to many medications, sulfa, the cillins, and magnesium just off the top of my head, reactions documented by military doctors and in her file.
But when she says this, she's treated as a drug seeker.
Just a dumb question, since my experience/knowledge only applies to chemo, tumors, and seizures, but is weed helpful for some types of chronic pain?
This is a double edged sword. Weed is frequently been recommended by some in my hip group as quite effective. The big problem is that many with chronic pain sign a pain management contract that they will use their meds, and only those. Their prescriptions are held hostage by the results of their regular drug tests....which also screen for illicit drugs.
Then you have people in professions where there cannot be a positive tested, and they are randomly tested regularly. DH is in such a profession, and a positive test results in firing.
DH has chronic pain and is able to get acupuncture covered by insurance, there were hoops to jump through and we are lucky to have a wonderful doc. Also, he has been trying CBD oil and is noticing a difference. CBD oil is legal to sell/buy and the levels of THC are minimal/trace where they do not on a drug test. It has the benefits of weed without the thc.
So as someone who has chronic pain (abdominal), it was the most depressing and worst time in my life. You are treated like an addict, people are so afraid to touch you or explore to figure out what is wrong. I can’t even begin to tell you the amount of medication I was on for the longest time. If i wasn’t going to therapy and didn’t have a good support system I would have probably lost it.
You are a shell of yourself and you feel so so worthless and it’s like you can’t do anything because you life/day-to-day activities revolve around if you can function that day. It’s a god awful thing to have and go through.
I am so sad this morning. Found out that a person I graduated high school with died last week after suffering with intractable chronic pain and being part of state and federal programs to combat pain. I'm pretty sure she committed suicide, and yet she was masking her pain since the last time I saw her was not long ago and her infectious smile was beaming as she introduced me to her son.
This is almost exactly on the 1-yr anniversary of a family friend who committed suicide due to 10 years of chronic pain.
Both were amazing people with healthcare resources (healthcare coverage, doctors, etc), and involved in communities and state groups to combat pain, and both have supportive children and families.
So why aren't we able to fix this? What happens with chronic pain that we can't make it better? Are we unique in the world that we have this problem more prevalent in the US then elsewhere?
I don't think she was masking it.
My mother struggles with chronic pain. She is always in some measure of pain but she can still smile and enjoy things.
But she's so frustrated and it's become even moor difficult to get meaningful relief now that we're suddenly concerned with white people drugs.
I don't know what the answer is but my mother has had a headache for over ten years.
Your poor mother. I know first hand how frustrating that can be and I hope she finds some meaningful relief. Serious question- what are "white people drugs"?
My mother struggles with chronic pain. She is always in some measure of pain but she can still smile and enjoy things.
But she's so frustrated and it's become even moor difficult to get meaningful relief now that we're suddenly concerned with white people drugs.
I don't know what the answer is but my mother has had a headache for over ten years.
Your poor mother. I know first hand how frustrating that can be and I hope she finds some meaningful relief. Serious question- what are "white people drugs"?
Im referring to the sudden sympathy we have for addicts now that we can point to legally prescribed pain killers as one of the issues that can lead to drug abuse.